The Journey to Recovery for Kelley Kalafatich

Happy New Year

2011-12-31T16:24:00.000-08:00

Well its the end of another year, and I had the pleasure of spending some quality time during the last of it down in Southern California with Kelley, Leona, Wilbur and Dudley. Between the fact there is no snow in tahoe, unbelievably cheap fares with Southwest Airlines, and the many attractions of San Diego County,it's been easy to contrive reasons for popping down to visit. In case some of you aren't familiar with the area Kelley is living in during the winter to pursue her therapy at Project Walk, it is very close to a number of high quality beach destinations including San Onefre, Carlsbad, Encinitas, and Solano Beach.

These last three are charming little beachside communities, cute and laid back (at least in the winter). I have been getting very into stand-up paddle surfing lately , so have scoped out the breaks, camping, and SUP rental shops, and there are some GREAT options. Julie Munger and I visited with Kelley in early December and had some great fun on some small waves, and great weather. We also met a parapalegic rock star named Jeremy in the parking lot. We got there when he was done, so didn't see him surf, but watching him scoot himself up the beach 200 plus feet unassisted to his car was inspiring on its own.

Julie and I also had a some quality time with Kelley. Her nerve pain is still a constant and sometime brutal fact of life. But she had a blessed reprieve for a little while during our visit, and we spent almost 3 hours paddling and hanging out on the beach in the Carslbad Lagoon. Some great bird watching, and I was amazed at how strong Kelley paddled. She went pretty hard for almost 1.5 hours. The next day after I left Julie took Kelley to REINS, a non-profit facility that enables disabled individuals to horse back ride. Julie got her signed up in the program, so hopefully she will able to do that soon, its less than an .5 hour from her house. Having spent the last few months around my partner Lisa's new horse, I have been reminded how calming and grounding being around these beautiful animals can be.

Then I went back down the week before Xmas with my friend Jennifer Yates in her Dolphin Camper, and our doggies to camp for a few days at San Elijo state beach in Encinitas. This campground was great, and just had to trot down the stairs to get to the surf break. Kelleys nerve pain was more intense during this visit, so we didn't get out paddling, but we did do several visits to the beach. I read recently that some scientists believe that very good things happen in our brains when we stare out over large view scapes that go on for ever, similar to meditation. Explains the calming experience of staring out over the ocean. We also had an awesome virtual surfing session, when it was a little to big for me to go out one day. Watching the big boys get the big rides, in between getting crushed, was very exhilarating, even from the safety of our beach blanket.

Kelley also brought her beefy tri-bike chair set up, so she could easily wheel on the firm low tide beach. We did some quality dog walking at the off-leash Dog Beach in Solano. This place is amazing, every kind of pure breed and mixed breed dog you can imagine, and all having fun. We didn't see one fight which was amazing, since there was literally 100 dogs there at any one time.

Kelley is hanging strong, but the nerve pain is still often crushing. She is going through some transition in her meds, which is proving to be a little ugly. Hopefully at the other side of that there will be some better relief. As after all my visits with Kelley, I am left frustrated and sad at this condition that she is in, but always inspired by her determination, courage, and ability to seize the good moments when she is graced with them.

So into the NewYear we go, with our struggles and our hope.... , I am raising my glass to more days at the Beach.....Sue

Settled In!

2011-11-07T17:23:00.000-08:00

Hi everyone, this post is from Ro. Kelley will not have internet for at least another couple of weeks so she asked me to post an update.

Kelley, Leona, and their precious pups (Wilbur & Dudley) made it all in one piece to the new apartment in Vista. Along the way they were able to visit with good friends at a get together hosted by Sue Norman at her place in S. Lake Tahoe. Kelley was really happy to see everyone.

Then Sue N. drove them the rest of the way from Tahoe to Vista, which gave Kelley much needed rest & recuperation time. Once they arrived at the new apartment, Sue, Caroline Paul, and Jody Conners moved everything in... the original trailer load, as well as a couple more hefty loads from the storage unit! Kelley is so thankful to these wonderful gals.

On Monday, 11/7 Kelley had her first of this winter's sessions at the new Project Walk building. Since she had been gone for several months, the first part of her initial session was a complete re-evaluation. She had been working her tail off all summer, and they were pleased with the strength gains and progress she made in the last few months. After the evaluation they followed with a short workout, and Kelley was still doing ok when I spoke with her a couple of hours afterward.
With the evaluation out of the way, her next session will start her full length kick-butt workouts, and Kelley is determined to make the most of them. As always, pain is a factor and progress is slow...but there IS progress and that's what keeps her going, (along with the love and support of her family and friends).

On a final note, I will say that I thoroughly enjoyed working with Kelley this summer and am in awe of her strength, determination, and the brilliant light that emanates from her.
Keep up the good work Kelley!

Love to all of you for your wonderful friendship and support!
Ro

PS: For those of you who wrote down of Kelley's new address, please note that minor corrections were made (see top of page).

Leaving MT

2011-10-19T18:18:00.000-07:00

It's getting close to pulling chalks...We're all sad to leave "the little house in the woods".

Time Table:
Oct 23 - Leaving Montana

Oct 24 - We'll arrive at Sarah Lee Lawrence's ranch in Terrebonne, Oregon. I am so proud of Sarah Lee. http://sarahleelawrence.com She is a woman who follows her heart, and keeps following it around all the curves, eddies, moving current! Sarah Lee has done so much already with her young life: from rodeo star; college graduate; river guide; building her log home; write her book called " River House"!! www.amazon.com/river-house ; she also works with soil...yes soil, she has established an organic HUGE garden. She delivers throughout her community. Sarah Lee also ran the Blue Nile with me, and was a carrier of the parasite schistosomiasis...don't worry...after learning about my situation Sarah took the Proziquantel medicine (poison) and is be rid of the malady.

Oct 24 or 25 - I am also hoping to see a good friend Ken Streater and his family, living near Bend, Oregon. A master of many fascinating things!: Firstly, when I met Ken he was a river guide/area manager; then later, husband to Danielle; father to 3 children; Real estate broker w/Benchmark Real Estate Services in Redmond OR; a writer and almost author of the book
"A Gift of Courage"...Ken chose to write a chapter about my struggles and determination during this crazy time. "Thank you so much Ken, I am honored, and with your writings you have given me more courage to keep charging ahead and believing in myself".
I hope to see you and your family on our drive south. I'll be calling you soon. And thank you, thank you, thank you, for offering to drive me south, how sweet is that!!! yeah, I was having such bad nerve pain. But last week Ro, my exercise gal, took off on a 10 day vacation, giving me a huge break with the pain. I'm doing better now these past few days.

Oct 26 - arriving at Sue Norman's house and relaxing with family

Oct 27 - 5-9pm Please come and visit us in South Lake Tahoe!!! Friends and family are welcome to come and visit at Sue Normans house: Google Ponca Drive, South Lake Tahoe, Ca It is the farthest north corner on Ponca...don't know the address just now. You can't miss the cars and my white dodge van with white cargo trailer. Sue's cell 530-400-8999

Hope to see you soon
Be Well, kelley

Project Walk's Grand Opening and Steps to Recovery

2011-10-10T16:48:00.000-07:00

Project Walk just emailed an announcement for a celebration in honor of their Grand Opening (of their 24,000 square foot facility--now world's largest spinal cord injury recovery center!!) and 7th Annual Steps to Recovery scheduled for November 5, 2001, 12pm-4pm http://www.projectwalk.org/grand-opening-and-steps-to-recovery-2011/

I know it's a long way to drive...so for those who can't make it to this southern celebration...the event will be live web cast direct from the Project Walk's website at www.projectwalk.org

Last years, 6th Annual Steps to Recovery, Jody and I attended, watching many of PW clients demonstrate their various stages of their walking abilities!! It was awe inspiring, and it gave me so much hope...the hope that helps fuel my dream. Maybe this years Step to Recovery will again fuel my hope....and whether it be this year or the next year or the next..etc., my dream and others will come true.

Montana update: We've had the fun pleasure to have my Auntie Darlene (my Dad's sister) come and visit us for the past week. Whenever she is here visiting she loves spending most (all) of her time outside, either pulling weeds or sawing and collecting brush--making piles on one end of the property or the other. I was able to get outside a couple times this week to help my mom and auntie Dar. Yesterday and today they burned. She even brought the makings for s'mores. I love my auntie.

Travel update: I am so excited and looking forward to checking out PW new facility!! Also, my Mom and I will be in South Lake Tahoe on Oct Wed 26 and Thurs 27. Thursday 5pm-9pm or so, Sue was thinking of having a small h'ordervers/dinner gathering (at her neighbors larger home)...it would be so fun to see friends who could make it up to her house. Also: Thurs. I'll be there pretty much all day, and Wilbur too...so if you could only make it to pop in and say hi, that would great too. Blessings & love, kelley

Fall is here in Montana

2011-09-28T11:34:00.000-07:00

Ro's birthday was celebrated this summer with a BBQ and friends. Photo: front row - Steve & Ro Fundum and their Dog Norman, and myself. In back row - Bob, Steve, Diane, Carol Ann, and my Mom Lee,

The sun is lower on the horizon making it feel like fall, but it has still been in the 80’s!

Nov. 3, I’ll be starting back with Project Walk…I believe they will be happily surprised to see the progress Ro and I have made!

The Plan: Oct. 21, we'll be leaving Montana, heading south, taking 3 or 4 days getting to South Lake Tahoe, where Sue Norman lives. I’m hoping to stay for a couple days at Sue’s…around Oct 26-28...So if there is any of you in the area Please stop in and say hi!!

Sue will help us drive, down the east side of Sierra‘s arriving in Vista, and move into the Shadow Ridge Country Club Apartments, on Oct 29-30. Address: 1669 Live Oak Road, Apt. #33, Vista, CA 92081. Caroline Paul and Jody Conners will be there as well!!…to help out with the move…ALSO, to go standup paddle boarding. I want to try out my Dad’s inflatable kayak he gave me in the lagoon, Agua Hedionda, in Carlsbad….we can all take the weekend and Monday to move in & go play. So again, if there is any one in the area, Please stop in and come play!

Ro and I continue to work…the last few workouts we were at Ro‘s house; in her huge downstairs room dedicated to exercise and entertainment!!!; with French-doors opening to a meadow with a back drop of the Bitterroot Mountains. Progress keeps being made slowly, giving glimpses’ of hope I will keep getting stronger, I find it unbelievable how far I’ve come!!…it’s painful, and at times I wonder what the heck this journey is all about. I don’t ever want to give in to the pain. Onward~~Love kk
P.S. Joanie, Heather, Mike T, Melancholy - Thank you for you supportive and loving message!!

Video of Kelley Exercising

2011-08-27T09:24:00.000-07:00

Hello again everyone,
I have uploaded the video of Kelley exercising on youtube at:
http://www.youtube.com/watch?v=2wYOmrfuD9c&feature=share

Ro

2011-08-26T15:10:00.000-07:00

PERSEVERANCE is the hard work you do after you get tired of doing the hard work you already did. ~Newt Gingrich

This blog update is from Ro, Kelley’s Montana trainer. It is difficult for her to post regularly when she is training hard and dealing with pain.

The quote at the top of the page reminds me so much of Kelley. I’m sure no one will be surprised to hear that she’s working her butt off, enduring pain during training, and even more severe pain afterward. It totally wipes her out and she often finds it difficult to do even minor activities, like eating, conversing, and writing on her blog. Yet when it’s time for the next workout session there she is, ready to go through it all over again.

Fortunately it is paying off. When Kelley came here from Ca, I could tell that she had made progress from the months she trained at Project Walk. We have incorporated the PW exercises into her training and also added a few new ones. Kelley is doing some major butt-kicking work. She trains three days per week (2 heavy days, 1 light day), and that seems to be working pretty well.

Improvements are small, but every single session we see some kind of progress. For example, Kelley is able to sit with her legs hanging freely and kick without any help. Granted, the kicks are small… about a 6+” swing with the right leg and maybe about 2-3” with the left leg. But that is huge, considering that just three months ago, she was just kicking about 3-4” with the right and about ½-1” with the left. So basically, I would say that she has doubled her kick distance in the last three months.

We have started doing a standing exercise, where Kelley stands at her walker with her massage table behind her for safety. I hold her knees and she alternates her weight from one leg to the other, lifting the ‘weightless’ leg to mimic walking while I stabilize the straight leg. She also does mini squats while I keep her knees from bending too far. We are both excited about these exercises, but they do of course cause pain. More and more, she is getting pins & needle type pains from her trunk area, all the way down her legs and into her feet. She has described it as a feeling of coming out of frostbite, combined with burning, stabbing, etc. As unbearable as it is, the pain continues to be a good sign. She continues to have slight improvements in sensation, in addition to her progress in movement.

I hope this describes Kelley’s progress adequately. It is so difficult for her to sit and write when she is spending so much precious energy on training, eating, sleeping, and regenerating, so I am writing the blog this time for her. The picture at the top was taken between reps at the walker. There are also a couple of great videos of Kelley at the walker and some of her kicking but I need to convert them to a more compatible format. I’ll post those when I get them ready.

Until then, Namaste!

Missing everyone

2011-07-14T16:41:00.000-07:00

It's July 16, 2011
It has been so long since I've blogged.
It has been so long I forget what it feels like to not have pain.
It has been so long since I've been on a river.
I miss my river buddies.
I miss Alaska, and the quiet beauty of the northern rivers and all the adventure.
It has been so long since I've seen my friends in Coloma valley.
I miss my Coloma and all the people of the valley.
I was so sad to have had to keep driving and not stop in while traveling north...it just about killed me to not stop and see everyone. I was planning to stay with Tiffany... I'm sorry Tiff I just had to keep going and keep pacing myself north.
Since being in Montana, now my permanent home, I've been wanting to write on the blog but I kept getting blocked by either: rehab, resting, or dealing with nerve pain...it's been difficult for me. Not only for the pain but not wanting to talk about it; either on paper, computer, or telephone. I just find it depressing. And when I communicate with friends and family I want it to be positive. I apologies to my friends for not communicating very well. There have been a few who have been checking in on me: Julie Munger; Sue Norman; Jody Conner; Auntie Darlene; George Armstrong; Kitty Tulga; Enoch Gordon; Mike Turny; Kurt Kaunzinger; Jimmy Katz; Caroline Paul; Gary Rollinson; Mel Riser; Sachi-myProject Walk trainer..... I am grateful for your support and love. Also I am grateful for all the multitude of blessings and prayers from family and friends. And also I want to Thank all those who have continued to contribute to my Rehab-Fund, I am forever grateful.
I have been writing on a yellow note pad onceinawhile and I have included my writing down below. When reading--please don't get me wrong when you see I mentioned my pain more often than not--I want everyone to know that things have been going really well...my nerves are growing!! I have been getting more movement!! and I have ONLY been moving forward...the progress still gives me hope towards walking again...it's just painfully, painfully slow. Come Oct 22, it will be four years since I have been paralyzed.
Lastly, MY TWO ANGELS: Mom and Ro, who have been taking care of me and cheering me on everyday....I am eternally grateful. Mom has been with me every step of the way...helping me with everything imaginable...without her I don't know what I would do. And for Ro, I'm so fortunate to have Ro Fundum...she is so committed to me and very knowledgeable. She's worked as a personal trainer for several years and during that time, for 3 years, she competed in body building. Now tell me how lucky I am!! Ro's incorporated her body building skills toward building nerves! It hard to describe the exercises but she uses: pumps; negatives; 7-up's; ratchets...etc. Ro, my "pain-maker", lives just two properties over and rides her bike over, meeting me at 10am. MWF's. Ro's married to Steve and they have an adorable jack russell dog, Norman (I call him little muscle man). They have a Teaching Taxidermy business www.taxidermy-schools.net/ If you click on "Location", some of Ro's photo's of the Thompson Falls area comes up.
Ooooh GOSH! I am looking out the bedroom window at the cutest thing in the world...there is the most adorable little fawn nursing through it's mom's front legs while mamma is standing over the top of it, cleaning her baby from behind. I am feeling pretty good and the sun is shining. I need to get my butt out side and enjoy the warmth while I can. Smiling blessings, kelley.

Date: June 15. 2011 Since mom and I arrived in Montana, a month has passed--to the date. I've been in so much nerve pain. It has been quite cold. Ro has been working with me.... the combo of work and cold, the nerve pain has been terrible!!!!!!! I have not been comfortable in so long. Ro and I have decide to slow down with rehab and rest more; hopefully I'll start to feel a little better. It is so so unbearable most of the time....I am so sad and depressed. Onward!!!..... I gotta keep going and not give up.
"I am not what happened to me...I am what I choose to become" ~ Carl Jung

Date: June 18, 2011 It's been so cloudy and raining with some sunshine coming through, but still it's 50 degrees....maybe I'll be able to get out and roll around the block with the dogs later this afternoon--if the nerve pain doesn't stop me. Ro just left--we had a nice workout with some nerve growing exercises and stretching and massage....todays exercise is kind of what we call an off day, a day to take it easy, while Mondays and Fridays are bigger days; usually Tues or Thurs are where I could go to the hot springs...maybe tomorrow??...if i feel good enough.
It's spring here: we've had bear come through the property and deer in velvet, mama elk with calves, and of course the mama deer w/ their precious new born fawns with their high speed wobbles and white spots. And on the porch: robins, bats and hornets have all moved in....we call it poo poo porch!! But I love watching them all and listening to the birds sing like crazy. Wilbur is always on point when he's outside and loves it when I can come outside with him. It seems his back legs are starting to go...on those off days when he is stoved-up it makes me sad to see him like that, but in perfect dog fashion--even on his off days he's happy just to lay on the porch or take a ride in my chair. Dogs just do what they gotta do and take things as they come :O)....that's my days.... gotta keep going. Onward!

Date: June 30, 2011 Ro and I have been doing really well. I still have nerve pain that is kicking my butt. I can't say how awful it is....i sometimes don't want to live.......like this for sure. Anyhow,......the sun has been coming out and it's warming up!!!! I do so much better when I'm warm. but yeah, Ro's exercises are paying off and I am improving with my movement and strength!
This afternoon we have a handyman (Royal & Son's Service) out on the property today making noise with the power tools--and I'm needing to take a nap so badly, my pain is not good--it's cute, Royal has his 12 years old son out helping him. They are out making my ramp longer so it's not so steep....So I'm glad they're out here making noise--it also gives me a chance to write. The heating pad on my legs and the space heater no more than 2 feet away and pointing directly at me. The Royals also deliver organic fruit and veggies...we tried it out and liked it, but didn't need the special service since we go to town often getting whatever is needed. Many people around here do what they can to make a living.
The other day a sharp rock was caught up between the tire tread on my Mom's car and flattened the tire, and the young man working at Les Swabs in town came out and changed the tire...it was Nick, one of my Mom's students when she taught 3rd grade. Thompson Falls pop. is around 1,350....so everyone pretty much knows everyone and you are bound to run into someone you know after teaching for 21 years.

Date: July 5, 2011 It's been really hard for me....peddle-to-the-metal between exercise, pain and sleep! -- Wanting to post a blog. I think about all my friends and family everyday. The computer is located in the dining area where found it way too cold for my nerves and the desk too low for my legs to fit under, thus I sit sideways to it... making it too uncomfortable to sit for too long. I've been writing on this yellow note pad from bed; either lying down on my stomach stretching my hip flexors or just leaning against my pillows. I need to get setup with a laptop.
The last week in June, Mom and I went over to Helena (a 4hr drive) to a relatives wedding; staying the night there then driving onto Cardwell, near Butte, to visit my Mom's sister and husband, my aunt Lorrie and uncle Jeff, and my cousins for 3 days. It was a 5 hr drive back home...it was a long trip for me, with all the visiting and driving...I was pooped...But it was fun to see everyone and to get out and do something different.
We've been saving plastic for recycling: wash soap and juice jugs, yogurt cups etc. We'd rinse them out good, but I guess they still have the residue smells...we had a bear on the porch last night....the bag full of plastic was hooked on a nail out the back door...the little flower pots on the porch were negotiated nicely, and he was c r u n c h i n g away making a huge racket...Wilbur barked only once, and Mom and I got up, and there he was on the lawn with his plastic trophies. We chased him off after we got a nice look at him. We're now storing the plastics in the locked shed with the garbage.
We wanted to drive to the Bison range today but my legs are still buzzing from yesterdays workout....I hope I can do something today!! I have so so so much pain all the frigging time!!!!...my pain sucks, and I hate to keep mentioning it all the time; writing it down helps.
I should try and head outside and get some air before I can't move...Mom is going walk to the mail box I think I'll join her.

Date: July Fri, 8, 2011 Mom and I were going to the hot springs today but I was TOO slow getting it together...had too many things to do personally this morning--everything just ended up taking too long. I need to work on my ramp anyway--so if I'm feeling ok I should do that. I want a better landing. We bought a sheet of ply wood yesterday....cramming it into the van resting it on top of my chair...at home we managed to get it out (I should say Mom did) with half of the plywood hanging out the van resting on the ground, then I drove away. It would be handy to have a big-boy around or a bigger mom (she is a peanut--only 4'11''); it's just frustrating to not be able to do things I once could. But we manage.
aahh... there are two bucks in the yard; they're in velvet....both 3 pointers....they are beautiful...just walking around not fearing at all. On the fourth of July, there were so many gun shots, firer cracker blasts, and one guy was shooting off a cannon!! ....all the critters were in hiding.

Road Trip!

2011-05-22T14:41:00.000-07:00

This blog entry is from Sue Norman, after finishing a visit with Kelley and her Mom. I flew down with my little dog Roscoe a couple of weekends ago, and spent the week in Carlsbad to enjoy a little summer sun ( been a little harsh in Tahoe this spring) and help Kelley and Lee pack up the apartment, for their summer hiatus to Montana. Kelley is going to stay at her Moms home in Thompson falls Montana for a couple of months, before returning to her physical therapy work at Project Walk in Carlsbad.
For those of you who may visit Kelley in the future down there, I found a great little place to recreate, at the Carlsbad SUP (stand-up paddle board) Club, on the Carlsbad Lagoon. I paddled there several times while I was there, including joining in on a couple of Crossfit SUP classes. Those kicked my butt. On my last paddle Kelley and Wilbur came with me to the Club site. Kelley was still recovering from her last Project Walk workout, so she hung out on shore while I took Wilbur and Roscoe on the SUP. We paddled over to a primitive beach on the other side of the lagoon for a little dog frolic, and then they just hung out contentedly on the board together while I did a loop around the Lagoon. I have trained Roscoe to be the consummate adventure dog, like Kelley did with Wilbur. They both are ready to jump into any kind of boat at a moments notice, and Wilbur goes EVERYWHERE with Kelley riding in a little basket rigged on the back of her wheelchair. Kelley liked the scene at the Club and hopefully can figure out how to do some paddling of her own in the Lagoon when she comes back down.
I went with Kelley to Project Walk while I was there, although her progress is still moving at a frustratingly slow place, there is noticeable gain. Her therapist has really been working with her on developing hip strength, and she can fire alot of muscles in her legs and feet to some degree (toes are wiggling more). She can pedal a spin bike unassisted now, albeit with no resistance. Unfortunately there is also a noticeable pain response after her two hour Project Walk workouts. Her nerve pain is as bad as it has ever been, and continues to be her most disabling challenge. Towards the end of the week, myself Lee, and a couple of her neighbors packed up most of their belongings to put into storage, and the rest in a U-haul to go with them to Montana. The U-haul was primarily for her therapy equipment, including a new used recumbent bike, which I immediately coveted. This bike is cool, and with Kelley able to spin now she will be able to use this bike on smooth flat roads in Montana, with some assistance. It will be a fun and I think relatively comfortable way for her to get outside and keep her leg therapy going.
After we got everything packed up, the three of us and our three funny little dogs began the first leg of their journey, to my house in Tahoe. We took two days to drive up the east side of the sierras, spending one night in beautiful Lone Pine. The scenery was spectacular, and Kelleys van is a pretty comfortable ride. After spending a couple of days at my house, they went down to Sacto for a doctors appointment and other visits, and then Kelley and her mom went on to Montana. I was of course worried about them doing this long drive on their own, but one thing I have learned about the Kalafatich women, they know how to dig deep to face their challenges. They arrived safe and sound several days later.
So please stay in touch with Kelley while she is Montana, she is worried about not having the motivational influence of her trainer at Project Walk, so any encouragement, even from afar would be appreciated. She will be back at Project walk by late summer, and may fly down there for a interim visit during the summer if she feels she needs to. And Lee will be joining her again for the fall and winter.
Take care all, and as Kelley does every day, remember to just take it one day at a time in pursuit of your goals, and never, never take for granted what you have in your life that is good. Even with all the crummy stuff Kelley has to deal with she always appreciates the love of her dog, her Mom, and her friends, ..... the feel of the sun on her face, the taste of a delicious mango/lime smoothy, and many of the other small things in life for which she is grateful. Sue

And On a Friendly Note!!

2011-03-26T10:01:00.000-07:00

I finally made it to the famous San Diego Zoo. My good friend Carr Clifton came to visit!! It was really fun to see him and getting my mind away from rehab. Not only did we go to the Zoo, but he took my Mom and I to the Anza Borrego Desert State Park, the second largest state park in the US, with 600,000 acres. It's known for the spring wild flowers and cactus bloom. It was so beautiful! Carr has spent many days, throughout years, at this state park photographing. Carr and I first met in 1991, on an expedition in Brazil, following President Roosevelt's journey their on the Rio Du Vida (river of doubt), now known as the Rio Roosevelt. Carr and I worked together on the movie documentary, 3 Women 300 Miles. He is quite well-known for his landscape photography, Carr Clifton is so worth checking out.....beautiful work! Thank you Carr for the visit and all the treats!! Onward!! Kelley

IF YOU TRAVELED TO AFRICA'S WATERS--An easy BLOOD TEST for Schistosomiasis

2011-03-25T13:48:00.000-07:00

Please consider taking a simple blood test for the antibodies for the Schistosomiasis Parasite, also known as Bilharzia:

I've been wanting to write for a while about how strongly I feel about being tested for the Schistosomiasis Parasite.

Even if you traveled way-back-when 70's, 80's, 90's, 2000's, and even if your visit was for a week and you had no side effects. I really feel the Schisto is very hard to detect and can lay dormant with virtually no signs or symptoms. Some Stories & Treatment is below.

A friend was on a Zambezi River trip with me around 1987, and she also did two Omo River in the 19 90's. Dec 2010 doctors found Schistosomiasis in a polyp after she had a colonoscopy.

Also: A woman river guide visited the Zambezi for 3 months in '95....ten year later, in 2005, she had cysts removed from her uterus, when the doctor glanced over at her appendices he saw hamburger and also removed her appendices and had it tested finding it full of Schisto!

Cysts in uterus has been found caused by the Schisto parasite--it also effects the liver, bladder, intestines, spine, brain...and who knows what else.

I've have two friends (two Great men) who've spent many many years in the African waters-Conrad Hirsch passed away from a brain tumor and Odd Nesje passed from bladder cancer. I've often wondered if Schistosomiasis was the cause of their passing.

If you know of someone who has spent time on the African waters please let them know about the Schisto parasite. Also I would be interested to learn if you've heard of anyone who has had the Schistosomiasis parasite.

Check these two sites out....TV program you may have seen on Animal Planet Called the Monsters Inside Me. It's crazy to think that Schisto can be anywhere in the body...I sure and hell hope it is gone out of mine!

http://wn.com/parasite_monster_inside_me_part_4

http://wn.com/Parasite_Monster_Inside_Me_Part_1

More reading for those interested in the Schisto parasite and Treatment:

Spinal Schistosomiasis
Schistosomiasis has been reported in U.S. river rafters in Africa.

Later symptoms are related to the number and location of parasite eggs in the body. Eggs travel to the liver or pass into the intestine or bladder, causing symptoms related to these organs. In rare cases, eggs can travel to the brain or spinal cord and cause seizures, paralysis, or spinal cord inflammation.

Ectopic egg deposition can lead to additional clinical syndromes including involvement of skin, lung, brain, muscle, adrenal glands, and eyes. Central nervous system involvement can result in transverse myelitis (best described for S haematobium and S mansoni) and/or cerebral disease (most common with S japonicum infection).

Eggs lodged in the spinal cord can cause transverse myelitis, and those in the CNS can cause seizures.

Single-day oral treatment with praziquantel (20 mg/kg bid for S. haematobium, S. mansoni, and S. intercalatum; 20 mg/kg tid for S. japonicum and S. mekongi) is recommended. However, treatment does not affect developing schistosomulae and thus may not abort an early infection. Adverse effects are generally mild and include abdominal pain, diarrhea, headache, and dizziness. Therapeutic failures have been reported, but it is difficult to determine whether they are due to reinfection or drug-resistant strains. Oxamniquine (not available in the US) is effective only against S. mansoni. African strains are more resistant to this drug than South American strains and require larger doses (30 mg/kg po once/day for 1 or 2 days vs 15 mg/kg once). Oxamniquine-resistant cases have been observed.

Patients should be examined for living eggs 3 and 6 mo after treatment. Retreatment is indicated if egg excretion has not decreased markedly. In the future, antigen detection tests may supplant quantitative egg counts as tools to monitor response to chemotherapy.

Rarely, the central nervous system can be involved, producing seizures or transverse myelitis as a result of mass lesions of the brain or spinal cord.

South America = Hepatic & Intestinal
Africa = Urinary

All reported patients with spinal cord schistosomiasis potentially have been exposed to infestation. Worldwide, S mansoni is the most frequent cause of Schistosomal myelopathy

Praziquantel - effective in the treatment of all forms of schistosomiasis, with virtually no side effects, Oxamniquine - used exclusively to treat intestinal schistosomiasis in Africa and South America, Metrifonate - effective for the treatment of urinary schistosomiasis

The disease is treatable, usually with the drug praziquantel taken for 1-2 days.

Praziquantel works by causing severe spasms and paralysis of the worms' muscles. This paralysis is accompanied - and probably caused - by a rapid Ca 2+ influx inside the schistosome. Morphological alterations are another early effect of praziquantel. These morphological alterations are accompanied by an increased exposure of schistosome antigens at the parasite surface. The worms are then either completely destroyed in the intestine or passed in the stool.

An interesting quirk of praziquantel is that it is relatively ineffective against juvenile schistosomes.

While initially effective, effectiveness against schistosomes decreases until it reaches a minimum at 3-4 weeks. Effectiveness then increases again until it is once again fully effective at 6-7 weeks.

[this last paragraph is a little confusing to me....but it sounds like it could kill the juvenile, they use the word relatively ineffective. The next two sentences are confusing, I don't understand it....could you explain it to me?]kelley k

What drug(s) may interact with Praziquantel?

•albendazole •barbiturates, such as phenobarbital •certain antiepileptic medications, such carbamazepine, phenytoin, fosphenytoin, oxcarbazepine •chloroquine •cimetidine •dexamethasone •grapefruit juice •rifampin •St. John's Wort, Hypericum perforatum

What side effects may I notice from receiving Praziquantel?

Side effects that you should report to your prescriber or health care professional as soon as possible: “fibrotic lesions around eggs could be lodged in these tissues “

•difficulty breathing •skin rash, hives, or itching Side effects that usually do not require medical attention (report to your prescriber or health care professional if they continue or are bothersome): •diarrhea •dizziness •drowsiness •fever •headache •increased sweating •loss of appetite •nausea or vomiting •stomach cramps

praziquantel: effective in a single dose against all species

oxamniquine: effective in a single dose, but only against S. mansoni

# 1 Thank You Coloma/Lotus Friends for your love gifts!!! #2 Shingles to Schistosomiasis

2011-03-07T11:34:00.000-08:00

Monday March 7, 2011

So, here I am trying to keep my focus--my pain is always there making me tired trying to tear me down. It is hills and valley's/current and eddies. The sun shines often here in San Diego and my Mom is still with me helping with food and wash!! giving me more time to rest and rehab. Today it's raining. George Armstrong phoned yesterday and brightening my day! Thank you George. I also received and email, from my friend I met on the Tat, Enoch checking in and reminding me to update my blog...thanks Enoch for keeping in touch!; my best to Mary Ellen. Also thank you to everyone who commented to my blog: Randy, Nony, Jody, Heather, Janet, Jeff, Dennis, and Kitty. The past few months was challenging--my shingles broke-out, and between the shingle pain in tandem with the normal nerve pain I had to dig deeper into my bag of courage to keep going with my rehab at Project Walk....going on Tues and Thurs, it literally has been wiping me out for the week. My naps are so looked forward to, the highlight of my day. But now i'm hanging in there and starting to do better, and able to work on the computer. Ken Streater and I have been emailing. He's writing a book "The Gift of Courage" !! and since then I have been reflecting over "courage" and try to put it to use everyday. Oh, My Mom just handed me a cup of hot cocoa w/ a yellow marsh mellow rabbit--now, that's flowing-in-easy-current.

I'm So Grateful For my Friends and Family:

Thank you Kurt for coming down and bringing my gear. I haven't seen Kurt since I moved to southern Calif (7 months ago)...it was nice to see him this past weekend Feb 27, bringing some of my belonging I had left in Sacto at his house, including my watercolor paint set...something I've been wanting to start doing. His visit was fast; he need to get back to work. I just don't know how he pulled the visit off, driving all night long from Sacto leaving at 11pm Sat; over the Grapevine in a blizzard (early morning); to San Diego, arriving @ 6am. He stayed the day and that night, then drove home on Mon.

Wishing you a Happy Anniversary Tiffany & Steve!!!..... I want to Thank Everyone who sent messages of love and support down with Kurt.....Janice, Tiffany, Janet, Robin & Bill, Julie & Scott,Bubba, Michelle & Kate, Kay & Monte, and Chad!!...So So sweet of you all to remember me....all the yummy jams, jelly, syrup, doggie cookies for Wilbur, music, book, Petco certificate, and checks, and lovely cards and letters--that I cherish and find strength from :O)

For the ones lucky enough to have traveled to Africa, here's a bit of facts about the Schistosomiasis Parasite: ...this is something I've been wanting to write for a while, and I'm thinking that if you have traveled there maybe you should be tested for Schisto (blood test for antibodies) or just plan take the medication for the parasite. Treatment is below.

A friend was on a Zambezi River trip with me around 1987, and she also did two Omo River in the 19 90's. Dec 2010 doctors found Schistosomiasis in a polyp after she had a colonoscopy.

Cysts in uterus has been found caused by the Schisto parasite--it also effects the liver, bladder, intestines, spine, brain...and who knows what else.

http://wn.com/parasite_monster_inside_me_part_4

http://wn.com/Parasite_Monster_Inside_Me_Part_1

More reading for those interested in the Schisto parasite and Treatment:

Spinal Schistosomiasis
Schistosomiasis has been reported in U.S. river rafters in Africa.

Eggs lodged in the spinal cord can cause transverse myelitis, and those in the CNS can cause seizures.

Rarely, the central nervous system can be involved, producing seizures or transverse myelitis as a result of mass lesions of the brain or spinal cord.

South America = Hepatic & Intestinal
Africa = Urinary

All reported patients with spinal cord schistosomiasis potentially have been exposed to infestation. Worldwide, S mansoni is the most frequent cause of Schistosomal myelopathy

The disease is treatable, usually with the drug praziquantel taken for 1-2 days.

An interesting quirk of praziquantel is that it is relatively ineffective against juvenile schistosomes.

What drug(s) may interact with Praziquantel?

What side effects may I notice from receiving Praziquantel?

Side effects that you should report to your prescriber or health care professional as soon as possible: “fibrotic lesions around eggs could be lodged in these tissues “

praziquantel: effective in a single dose against all species

oxamniquine: effective in a single dose, but only against S. mansoni

One more thing to share..it was on Feb 28 while at Project Walk: I met a new client Mark, from Ireland, with his fiancee. Mark had lost his sight in an accident when he was 22, fifteen years later in his room a window was accidentally left open by a friend--Not knowing it was open Mark fell out leaving him paralyzed just before his wedding day!!...the two worst things that could possibly happen to a person: blinded and paralyzed. My eyes watering, trying to hold back my tears as his fiancée and I talk back and forth with one another, and she telling me their dreadfully sad story. I pray for Mark and her.

"There is always, someone who is better or worse off than yourself."

Gratefully, kelley

It's a New Year 2011....& something new!!

2011-01-05T10:44:00.000-08:00

Yesterday, during my workout at Project Walk I spent most of the time on the total-gym, for at least 25 minutes! We had the slant board on the 3rd rung and I was able to push and bend my knees for the first time!!...Seeing that slant board move and knowing I did it, I couldn't help crying....it makes me work even harder knowing progress is being made!! I paid for the workout yesterday evening, with my quads and butt throbbing with nerve pain. This morning I was exhausted, but doing ok with not too much pain. Onward!!! kk

Merry Christmas & Happy Peaceful New Year

2010-12-24T10:46:00.000-08:00

It's X-Mas Eve... I've been meaning to write long ago.... My Mom Lee arrived the first part of November, and it has been such a blessing for me, for all her help is extremely appreciated, as is her company.... especially around the Holidays.

My progress at Project Walk is what I expected....Slow-but-Steadily and moving forward. It's true, really each time I go my instructor Jason and I notice an improvement! He also sends me home with extreme nerve pain for the rest of that day and the next!....But thank Goddess I feel something and I am moving forward.

On another positive note I have found a wonderful doctor. Dr. Suzy Kim -- she's with the Irvine Medical Center. Her website: http://www.ucirvinesportsmedicine.com/faculty/kim.html
Dr. Kim has been spinal cord injured since '97, from a boogie boarding accident at Newport Beach. She understands my issues and is proactive in my case. For those who are spinal cord injured and reading my blog: "Neurogenic" bladder issues....I was going every hour!! Dr. Kim prescribed Ditropan to help control the number of times I go, and possibly help with the nerve pain too. So far it seems to be helping some what with the number of times I go, but my nerve pain is still something I have to deal with 24/7. I am also hoping Dr. Kim can help me with acquiring a standing wheelchair....it's a wheelchair you "pump-up" to a standing position and for weight-bearing.

"Christmas is a day in which we think of everything we have ever loved."
Thinking about you all and Wishing you Warm and Happy Blessings on the Wind for the New Year! ~kk & wilbur
p.s. Thank you Heather B Freer for checking in and sending strength and love.

new wheelchair

2010-11-01T09:49:00.000-07:00

It has been crazy, my nerve pain has been friggin out of control. At night I haven't been able to sleep...which is very different, I am usually able to sleep. This might be a good sign my pain is changing, with different sensations, a little bit more of a quad contraction...??? It is hard to know what is going on with the electrical cords running through my body...I do know there has been small improvements and the pain wipes me out! It's hard to keep up on the laundry, cleaning house, bathing or preparing meals....it's nice to have a Trader Joes near by!...it's on the way home from Project Walk. Wilbur and I have been on our own for three months and for the most part we're doing okay, and that makes me feel proud and not so dependent. Our highlight is going to the park, being outside in the sun. Tuesdays and Thursdays we go to Project Walk for 4 hours. I try to get their an hour early to ride the FES bike (Functional Electrical Stimulation – it sends small electrical pulses to paralyzed muscles to restore or improve their function) then work with the trainers for 2 hours and stay another hour for standing or core work. Wed and Fridays are recovery days. If I am not too wiped out, on Saturday I try to get into PW to ride the FES bike and other workout stuff I can do on my own.

Barb Cartwright, a girl friend I have known as long as Julie Munger...we all ran rivers together in the early 80's, and I like to think that we still do. I remember back then, Barb told us about her brother who was sci injured. We felt awful for his injury. Barb emailed the other day...wondering if I knew of anyone who was in need of a wheelchair, her brother was donating his manual wheelchairs. Oh my gosh, Richard, her brother who was paralyzed. It came flashing back. I wondered how her brother is doing! She said he is hanging in there and was wanting to donate some wheelchairs. Well, Barb's email has come at a time when the front wheels on my chair have been having trouble staying on...yeah, they fell off twice but I wasn't going fast thank God!...the shop was also having trouble fixing them...they fell off twice more. I needed them replaced....it would cost $480/wheel! After speaking with Barb, she UPS'ed Richard's chair the next day!...it has been a blessing...it is so much easier to get around, making life more fun...but, has also made me sad knowing Richard has had to move into a power-chair. Richard you are in my prayers. I thank you , and want you to know how grateful I am, not only for the use of your chair, but for your inspiration and courage you give me everyday. And thank you Barb for your help...I look forward to seeing you! With Love and gratitude, kelley ~ the river flows...Onward!!

Big Sky Country, a Piece of Heaven

2010-09-24T20:22:00.000-07:00

The Kingdom of God
is not far away -
It's as close as the things
we do and we say.
And the people like you
bring heaven nearer
And help to make
God's image clearer.
~ by Helen Steiner Rice

Thank you Thompson Falls for your Caring Support!
And Thank you Ro, and your team (Dianne, Carolanne & Bob)
for working so hard and putting together
such a FUN successful fundraiser!

Last Friday Sept 17, the film showing and fundraiser in Montana was a huge success, with a huge turnout, between 80 and 90 people, with over 25 auction items and raising just over $6,000!! And what a wonderful table display of food and assortments of desserts! I was sad to leave, and so pooped when I returned home. I am finally getting back into the swing of things, working hard and sleeping hard. Tomorrow I am planning to go with Jody to La Jolla Beach, to meet with some folks who help with SCI get into the ocean...called Wheel 2 Water. We'll have to see how it goes.
Thank you again for the fundraiser...Gratefully & Blessings to All, kelley

Fundraiser & Film Showing in Thompson Falls, MT

2010-09-15T10:14:00.000-07:00

Many thanks to Ro Fundum for organizing this Fundraiser & Film showing in Thompson Falls, Montana, this Friday Sept. 17. The event will help with the continuation of my rehab in southern Cal, at Project Walk.

Time: 5:00-9:00 pm - Silent Auction & Appetizer/Hors d' oeuvres/desserts; at 6:45 pm film "3 Women 300 Miles" (60 min).

Where: New Life Fellowship Hall - Airport Rd. Thompson Falls.
Suggested donation: $10

Ro & Carol Anne, and many others here in Big Sky Country have worked so hard putting together this fundraiser & showing...I am so blessed.

After last Thursdays workout--I pack my bag and was able to take the week of Sat. 9/11 to Sun. 9/19 off to be here in Montana, visiting Mom, relatives & friends. My parents have lived in Thompson Falls for 31 years and I have met so many wonderful people throughout those years....and I am looking forward to seeing them and meeting new friends Friday night.

At this time in my life I'm finding it difficult to have time to do "other things" such as write on the blog......my stamina has been low. I try to pace myself and conserve energy just to allow time for my exercise rehab, eating and wash clothes; my poor apartment kitchen floor needs to be cleaned! It's been interesting to be out on my own...good in many ways too, but somethings just don't get done. But I'm looking forward to Mom coming down, the end of Oct., for the winter! (looking forward to her company and help, and having more time to write on the blog ;). Wilbur and I get to go to the park everyday, that's a must...we've only missed a couple times.

Being here in Montana for the past 5 days has aloud me to catch up on sleep & relax, and walk the dogs around the beautiful block with Mom and Ro.

I appreciate immensely all the support everyone, everywhere has given me; making it possible for me to

be working at Project Walk. Movement and sensation is happening!! little by little, giving me more hope, and courage to keep going. Onward!!

Love and Blessings, kelley

P.S. For those who love Dogs & know Wilbur--he make a smile....

"Wilbur and the Squirrel in MT"

My New Address--Vista, CA 92081

2010-08-18T13:36:00.000-07:00

Jody is getting ready to start teaching history to her high school students...I'll sure miss her help and most of all her company. One week ago I moved to Vista, CA., so I could be near Project Walk in Carlsbad. It's a safe place and I am very fortunate to be able to live here and continue to work towards walking again. I moved into an apartment...living on my own for the first time since my injury...it can be a little challenging, and lonely, but I have Wilbur and there are such great people who I've met through Project Walk who are in the same boat as me. There are a few who can get out and ride handcycles together on the weekends...even though I've only gotten out ONCE for a ride!...wanting to turn the light switch on downstairs (legs) it is sometimes difficult to get motivated to handcycle...but it would be good for me to get outside. There are a few things I need to learn how to do on my own: Firstly, I need to learn how to load the H-cycle into the van, get on it to ride and off, and re-load back into the van myself...I have the will, so there must be a way. There is another fellow who's SCI, Van, who mentioned he could teach me how to do all this...so the bet is on...maybe next weekend I can get out and cycle! Project Walk has been keeping me busy with exercising and recovery days...instructor Jason Smith (x-bodybuilder) say's he can feel the subtle improvements I am making!! "The nerve pain is all part of it", he say's....and, "remember to take it easy on yourself, rest when your body tells you to". Jason's a very unassuming quiet fellow, who's serious about his work...I'm lucky to have him work with me for part of the time I'm at PW. For the past two nights my nerve pain has been different...I HAVEN'T been able to sleep for the first time in along time...the throbbing is mostly in my hips...after finally falling to sleep at 6am I rested until 12 noon!! I hate it, I feel my day is gone....and so does Wilbur! Poor Wilbur he wants to go out and romp! Okay, we are on our way just now to the park!
Onward!! kelley

P.S. It is hard to think about myself when the world feels like it is falling a part around us....flooding in Pakistan! Haiti! the Gulf waters! I am so grateful for my life and what I've gotten to experience in it. I have a girl friend, Stephanie Pope who has been battling a brain tumor that is inoperable...I ask you all to please send her healing prayers. And to Help Steph with medical costs--a beautiful necklace, Love Whole Heart Pendant has been made (by Ashley Bennett Stoddard) benefiting Stephanie.

To purchase pendant go to:
http://ashleybennettstoddard.com/index.php?page=causes/love-whole-heart

My prayers are with you Stephanie...I think about you everyday, and I pray for peace and strength. I Love you, kelley

Beach Beauty Shop / Looking for Room to Rent for Winter

2010-07-19T11:22:00.000-07:00

Reanna just finished Cosmetologist School 3 days prior, and I was one of her first customers...not able to fit in the house with my chair, she set up shop in her beautiful back yard for me! I was so grateful for her time and skills....she did a excellent job! (photo: You can see Jody trying to hide behind the mirror stand while Reanna is "styling". Click on pic to make larger.)

Looking for Winter Housing

If anyone knows of a place I can live (rent) for the winter near the Calsbad area....or Encinitas. Oceanside, Vista.... My plan is to stay through the winter, working with Project Walk. The results my body is getting from working with the instructors has been outstanding!....I'm getting stronger, muscles are firing, and leg movement is improving!!
I can't be more grateful for the opportunity to be here....AND Thank You, to EVERYONE who has contributed to my rehabilitation, and helped make it possible for me to be here.
Sincerely, kelley

Jody Conner! My Inspiring Trainer, Training!!

2010-07-04T12:49:00.000-07:00

4th of July weekend, Jody and I went for a run and trike ride with Beth Sanden (competitor and advocate for Challenged Athlete Foundation. Please check out an article on Beth's story and photos, http://www.ocregister.com/sports/sanden-146735-edwards-ironman.html?pic=1). After meeting Beth in front of 24hour-fitness gym, and exchanging email addresses, Beth invited Jody and I to meet at the beach with her and some of her disabled triathletes and friends for a ride along the beach. In the photo above Jody is running along side for part of her workouts for the day...she is in awesomely amazing shape!...Built for professional sports, people are always stopping her for an autograph, mistaking her for pro-volleyball player "Holly McPeak"! She's always in top condition ever since I've known her, since meeting while outrigger canoeing on lake Natoma, 7 years ago. Jody also paddled with our US whitewater team and helped by filling in for workouts in the raft, and giving a few pointers for conditioning. She is always ready to play a game of Beach-Volleyball at a moments notice...her passion. Since I arrived in Southern Cal, she has been there for me none stop helping in whatever it maybe....from helping me to bed, food-shopping, to assisting with intense exercises. Jody is such an inspiration to me and keeps me striving to reach for more, and to never give up, as-well-as telling me to go take a nap and get some rest. Then after waking up we'll either hit it again or do something restful and go watch the sunset, or I can always enjoy watching Jody play a game of beach-volley.
There was a lot of networking going on during our ride along the beach....I learned everyone suffers from some degree of nerve pain and was unable to work; all except Van, he said since he has been working with Project Walk he is able to work part-time. In Photo below (from left to right): Kathy and her husband Lance-he is sci from a surfing accident; Van-sci from a 40mph biking accident; Firman-disabled from a stoke; Beth-our leader-sci from a cycling accident during a triathlon; Patrica and husband Tom-sci from a hang-gliding accident; Jody & me.
At the end of our ride, even though my nerve pain was starting to kick in, I wanted to try out Tom recumbent bike to see if I was ready to start pushing a bike with my legs. He let me try it out. His wife Patrica took the time to help me around the parking lot steering me while I tried to pedal and adding encouraging words. At the end I learned I'm not quite ready for it and will be needing to spend many more hours on the spin-bike before I start think about selling my hand-cycle. At the end of the day it left me wondering "who were those people?? We all became fast friends, caring for each other and making sure everyone was doing okay. Halfway through my trike got a flat tire....not being ready with the tools, nor Plan A or B, Beth had a spare tube, tools and pump! and Tom provided the brawn and started changing it by pulling up beside my trike, from sitting on his bike he contorted his body and pulled the tire off and put the new tube in...while I sat like a queen in my seat. It was a fun day, I paid for it last night in nerve pain :O( ....letting me know I'm alive :O)!!

HELL-Week in Southern Cal

2010-06-27T09:47:00.000-07:00

It is the first morning I finally feel more like myself after arriving in Dana Point, last Sunday, 6/20. With a day of rest from the traveling we moved right into Project Walk's exercise regime...Jody and her daughter Makenzie helping--taking photos of the exercises I was doing and carefully taking notes so we could duplicate them later at home. Drips of sweat drop off the end of my nose, David my trainer who trains The Chargers in the off season in some kind of weight work, is carefully spotting me so I don't fall while telling me I have 2 more to go, then he looses count and say's 8 more to go!!..and so on...I'm wearing weight vest(s) to increase resistance. Like I said, I've been so wiped out from the week there has been no time to do anything else but eat and sleep. The weather is lovely and the energy to be outside and exercise surpasses any other place on the planet....being down here will keep me going for sure...Dana Pt is a cute town with a beautiful harbor and beach area with people out exercising in many different venues. This afternoon Jody's Mom Totsy, who is so kind and patient and full of energy (grand-daughter and daughter like mother) planned a BBQ at Doheny beach with family and a friend from her church, Ted, whos' handicap as well, whom I look forward to meeting and finding out some of the ins-and-outs of Dana Pt from a wheelchair perspective. In photo before workout Mak is helping me with the Active Ankles to help keep my foot from turning in.

Kurt & Wilbur driving the U-Haul

2010-06-14T17:42:00.000-07:00

This morning Mom and I drove to Missoula to pick up Kurt at the airport, then stopped by the gas station/tire shop to rent the U-haul...most of the exercise equipment and gear was loaded up before the days end and it looks like we'll be heading out tomorrow morning. I'll miss it here, my Mom and the beautiful calm open country, Ro and her unconditional help and of course Dudley (mom's doxie dog).....But I'm also looking forward, to the ocean sea breeze in Dana Point and Carlsbad area, and starting Project Walk & learning a some more tricks to get my legs moving more. Thank You Kurt for taking time off work and coming up to help me move :O)!! love, kelley

My 4 Angels

2010-06-11T07:25:00.001-07:00

Mom (Lee) and Ro have helped me so much, they've been in constant vigilance for my rehab and safety...I am so lucky and grateful for all their help. Ro is helping me walk in the photo to the right...wearing a black belt around my waste for Ro to hang onto while I wobble along. Mom below with her patience's and constant smile as well as keeping me fed and a bed with clean sheets. My other 2 Angels...Dudley and Wilbur (dogs) giving their unconditional love and always keeping us laughing too. Love, kelley P.S. I wanted to add my swimming ability...click on the black arrow at the bottom of dark screen

Swimming and Spinning

2010-06-05T17:19:00.000-07:00

The sun finally popped out today, it has been raining so hard for the past few days it was nice to see it. My Mom was out working in the yard and planted 4 Blue Spruce, she has 9 more trees to go in the ground...2 Engleman Spruce; 1 Cotton Wood; & 6 more Blue Spruce. I slept late this morning but finally got going around 11am...Ro worked with me for 3 hours...I rode the spin-bike for one hour for the first time! Thank you Ro!
On May 31, a girl friend & fellow outrigger canoeist, lost her husband while x-country skiing with their two young sons....she and her boys have been in my constant thoughts and prayers. I love you Lise.
kelley
P.S. To play the video click on the black arrow.

Neuroplasticity

2010-05-25T08:28:00.000-07:00

"Neuroplasticity-When stimulated through activity, the brain compensates for damage by reorganizing existing connections, forming new neural pathways to accomplish needed functions. Undamaged axons sprout new nerve endings, which form connections with working nerve cells, as well as with neurons that were injured or severed" ~ Ro Fundum found this interpretation through her research and made copies of it (my New Mantra)....using beautiful photo's of running water for the back ground, that she took...Ro pinned them up to the walls of my Mom's house, so at every turn I'll have to focus on Neuroplasticity, my new buddy.

Ro is such a great friend, and neighbor to my Mom, and she has been helping me with rehab exercises and massage day in and day out...bringing with her a quiver of items to help with exercises or prosthetic improvements...Ro is quick to figure out easier or safer ways to exercises....inventing things such as a new and improved "softer" bike seat; foot wedges to help correct foot angles; pulley system for leg lifts; gravity boots so I can stretch-out my spine; an easier and safer way to get me on and off the spin bike...she is in constant motion researching every subject that comes up pertaining to my recovery!...I love it!

Since being in Montana, I have been either exercising, sleeping or eating...I've been wanting to Blog but it's been difficult to find time. There is so much I want to write. I have been making improvements with muscle movement and skin sensation. Sensation (touch) has developed more and more in my feet, hips and now right-side of right calf! We can see the muscles moving and developing more in my quads...while sitting on a table with legs hanging down, the right leg can actually kick forward about 1 inch! I can kick and pull...leg swinging back (1") and forth (1")!!! Lots of nerve pain is involved with my recovery...having any kind of feeling is good news, but it hurts like hell.

Today (May 25) Ro and I are heading to the Quinn's Hot Springs, about 45 miles away. I've been once before already...there's approx 5 different pools with different temperatures...it's nice the largest one I can do laps in and is the perfect temperature for my nerves. I really think the minerals in the hot springs can help, it makes me feel calm and relaxed after wards, perhaps it is beneficial for my nerve pain...swimming has always been great...now in warm water, I'm in heaven.
Many Thanks to Ro's continual, unwavering help, I'm deeply grateful.
Onward! Love, kelley

The next Chapter in Kelley's Journey (a note from Sue)

2010-04-30T22:48:00.000-07:00

I remember the first time I thought there was something extraordinary about my friend Kelley. It was a couple of years after I became friends with her and Julie Munger while working on the SF American river. Kelley had left California to work for Sobek on the first year of their operation on the Zambezi in Africa. Someone came back with footage from that first exploratory year on the Zambezi and was showing it at one of the regular guide’s Sunday night “un-wind” at Yosum’s pizza.

The footage starts rolling with a wide frame view of one of the rapids on the Zambezi at very high water. I had been on my share of big volume water, but the magnitude of what was displayed on the screen was truly impressive. The frame is filled with a mass of roiling and boiling, muddy brown, monster sized waves, hydraulics, and eddies lines. The magnitude of the whitewater is given perspective by a little bitty looking object that is floating towards the top of the rapids at the very top of the frame. As the camera zooms in it brings into focus an 18’ raft with two passengers sitting in the front, and Kelley standing up at the oars, slowing rowing towards the V. As the current starts to pick up, Kelley starts pushing into the oars with all her might. She is not just rowing now…. She is attacking! By the time she hits the first wave she is rowing forward at a pace that is truly remarkable. The monster waves crash over the raft from all sides, but Kelley stays on her feet, punching her fists into the oars over and over again.

The cheers from the crowd mixed with my own, as we all voiced our appreciation for the strength, courage, and mastery Kelley displayed rowing through the most gigantic whitewater most of us had ever seen. It was inspirational.

Well I am once again inspired. After a truly miserable winter, recovering from her discouraging accident which left her with two fractured femurs, she is now heading into the V again. She is taking charge of her life and moving forward. As she has shared in recent blogs, she will soon be entering a rehab program at a facility called Project Walk, that specializes in aggressive rehab for spinal cord injuries. She knows the program she will be put on will be hard and painful, but her recovery from the fractures, along with her small continued improvements in lower body motor function are encouraging. And she continues to show the rest of us the way…… when entering the gaping maw of the challenges in your life…. keep your eye on the V, “stand up”, and keep up the attack! Just like Kelley. Sue

Hi From MONTANA

2010-04-26T17:02:00.000-07:00

At Mom's place...a log home my Dad and she built together surrounded in Larch, Lodgepole, Douglas fur and a few Ponderosa pines (the state tree and my Mom's favorite). The dust is finally settling from the whirlwind of unloading the rig my sister Kim and husband Lance hauled up north to Thompson Falls. A BIG THANK YOU to them! All the equipment is either on the front or back covered-porch. I look forward to organizing the house and porch where the equipment can be at hand and a routine established so I can finally start building strength back. Lance has already built a ramp making is easier to get in and out of the house...SO helpful to having freedom. It's beautiful here, peaceful and calm.Wilbur's Loving it!...he can now actually be a dog, running around exploring and smelling things...we love watching the deer coming and going on the property...so sweet; they're losing their winter fur and looking scraggly--Wilbur quivering--dying for the chase. Just after arriving the temperatures were in 40-50's with some rain, with cloud bursting snow flurries, then the sun would peek through...very pretty. My bedroom is down stairs in the living-room, with a window at my left shoulder...I'm able to look out at any hour...knowing what the moon phases are in and seeing stars help me get back on track too...I like seeing it shine and light up the woods. Today's sunny and warmer...it was nice to be out on the porch using the total-gym in the morning sun...and once I get into better shape I'll be able to catch a workout on the back porch with the paddle-one machine and spin-bike for afternoon sun and sunsets. There are some exercises I can do on my own...but there are some I can't....our friend and neighbor Ro, helped me this morning with my exercises...and has volunteered to help for the next 6 weeks I am here, 1-3 hours a day!! I am SO grateful. Thank You RO!! And Many Thanks Again to My Family: Mom-Lee and sister-Kim, and my brother inlaw-Lance who is both my Mom's and my hero, helping us get settled in!(hauling, lifting, and building my ramp, replacing the hot water-heater, logging dead trees and burning brush...etc). Thanks Lance!
Yeaaah I'm here, kelley

Georgetown Benefit-With Deep Gratitude

2010-04-18T17:48:00.000-07:00

MANY HEART FELT THANKS go out to ALL the people involved with helping Geri Teixeira, of Be Jazzed fitness, put together a very successful fundraiser, on my behalf, at the I.O.O.F Hall in Georgetown last Friday night April 16th.

AND A SPECIAL THANKS TO: Pam Bailey; Dixie Paganucci; Rebecca Murphy; Kelly Bratton; Linda Thorpe; and Patty Smith. And to Larry Morgan donating the use of the Hall; Music on the Divide provided the curtains; Darcy Knight was the projectionist and Bryon provided technical support. And to Geri, a very special lady,....thank you so much for having the idea, and making it a reality.

I was so sad to not been able to attend...my nerve pain was too much for me to bear to travel...but my Mom and two friends, Sandy McNulty and Sean Cheng were able to attend and represent me. Sean took video and photos for me to see. Thanks you guys!

I was genuinely surprised when I learned the Showing generated over $3,000 dollars....from this small mountain area! I am still sad I was unable to be there to thank everyone personally for coming and supporting my goal to walking again. The money earned will help pay for many days of rehab at Project Walk.

Geri, it was such a generous gift and HUGE effort to take time out of your busy schedule to put together this Benefit--words cannot express my gratitude, thank you.In Loving Friendship, kelley

P.S. I also want to Thank my Girl Friends in Lotus for the Beautiful Necklace!!..I am wearing it now :o)

My Visit w/ Project Walk

2010-04-09T08:46:00.000-07:00

Everything went really well in Southern Cal, including the weather! Jody Conners and her Mom Totsy were wonderful hosts welcoming me into their home for the few days I was in town to check out Project Walk's facility. Since Jody has the qualifications needed she is able to go through the program they offer called "Train The Trainer". Jody's real job is teaching history to high School students and will be out of school on the 18th. So we'll begin working together June 21st, first spending a week together with PW showing us how to correctly and safely do the exercises and what all else is needed to help strengthen and grow nerves (through repetitive motion) towards helping me walk again. Also Jody's Mom Totsy invited me to live w/them for the summer. Things are falling into place. Thank you Jody and Totsy! And to you All checking in.
" There are two kinds of dreams. One is a dream that's always going to be just that....A dream. Then there's a dream that's more like a map. A map that you live by and follow religiously, knowing that someday your going to stand on top of that Mountain holding everything you worked for Right There in Your Hand!" ~ R. Cooper
Exercise is my Religion!!...Thanks Ro for the quote :o) kelley

A Movie Showing - Fundraiser on the Divide

2010-03-27T15:25:00.000-07:00

Geri Teixeira of Georgetown's "Be Jazzed" is Hosting

Movie Showing: "3 Women 300 Miles"
A Fundraiser for Kelley on the Divide, in Georgetown

April 16 Friday night at 7:00pm

at the I.O.O.F. Hall in Georgetown
(Main St. and Hwy 193)

Suggested Donation $25

(everyone is welcome no matter the cost)

serving popcorn ~ candy ~ sodas
DVD's available for sale ~ $40

There will be prizes.
Some prized donated by Sierra Outdoor Center
Lincoln Way, Auburn, CA

For more information please contact Geri Teixeira at 530.823.1128

Geri is the owner of Be Jazzed and has been teaching fitness classes since 1981. She said, "...that I always trying to reach out my students in ways to motivate them to reach their goals, overcome their obstacles and help empower them. I know now that fitness or wellness is a lifetime commitment which involves body, mind, and spirit. All these aspects need to be nurtured, exercised, and rested. And I believe all of us could learn more about ourselves by seeing your beautiful film of your trip down the Grand Canyon. A place I too love".
I was very flattered when Geri ask if I would share the 3 Women film with her fitness classes! Her philosophy rang home...take care of our bodies-our minds-our spirits!...through exercising, resting, and eating right to maintain a healthy body and weight. To Join Geri at Be Jazzed fitness in Georgetown, please call 530.823.1128
I look forward to traveling to Georgetown and to breath in the fresh pines at the higher elevation on the Divide...I just love saying that word...The Divide...it sounds so strong and sure :o)
Many thanks to Geri and to so many others for helping fundraise for my rehab to walk again. kelley

P.S. I'll be visiting Project Walk in Carlsbad - March 30th. I'll be flying tomorrow to meet up w/ Jody Conners in Dana Point.... we'll visit with Project Walk on Tues. to check out their facility and for them to check me out and also to figure out my possible living situations and whatnot. If anyone has any ideas let me know. I'm getting excited! kk

Fun in the Sun

2010-03-21T19:00:00.000-07:00

Hi everyone,

Today was really a fun day for me...Sue Norman and Lisa Dearing came down from the "colder climate" of Lake Tahoe, to a "warm & sunny" Sacramento, and took me out on the American river bike trail...including the 3 dogs; Wilbur and Rosco in the basket and Maddie running beside, on squirrel patrol. After returning home for lunch and a quick regroup, they loaded Sue double sea kayak and Kurt's double canoe on the rigs and we all went for a paddle on Lake Natoma...dogs included! Burritos for dinner! What a great day!!! Thanks Sue and Lisa

Last week I finished the 5 week Bowen treatments...and really do believe that it helped me regain more energy and flexibility...I look forward to a monthly Bowen tune-up. I really have been getting up earlier and able to sustain more exercise. My pain has been getting better if I don't over do my exercise...I was down with pain! for 3 days! last week because I did just that.

Last Friday Bessie Jackson pick me up and drove me to a Nevada City acupuncturist, Dr. Dennis Tucker. Bessie is treating me to the first series of appointments to see if the type of acupuncture he uses will help. The treatment technique that Dr. Tucker developed is very different from conventional acupuncture treatment. This is how he explains it..."Neuro-muscular mapping and involves precise palpation to map the pain syndrome from the spinal nerve roots to the primary myofascial changes that are involved in the neurological expression of inflammation, and or, altered nerve transmission throughout the affected area." I had my evaluation and a few needles suck in me and I was out for the count!... very relax and when I got home at 1:30pm I went to bed and only woke up for dinner and then went back to sleep until Kurt woke me up for pancakes at 9am. whew!! I was so rested and felt so good, after b'fast my Mom and I went to the pool. My legs were really moving! I was bicycling my legs underwater and walking! I felt good, strong! The pool has been a wonderful help in strengthening and bending my knees too where they are both past 90 degrees! I am so happy. And all my pressure sores on my foot are gone and I am able to stand longer and longer everyday. I look forward to visiting Dr. Tucker again next week. Thank you Bessie for taking me to Dr. Tuckers!

Take care, love, kelley

Project Walk

2010-03-03T16:22:00.000-08:00

Hi All,
The pool and warm spa has paid off... along with the Bowen treatments... the left knee (with TKR) is now bending past 90 degrees! and the right is doing good...and I'm able to cycle with a stationary bike that cranks with arm peddles. It feels so good to be able make the complete revolution with the legs! The nerve pain still sucks (my mom hates that word) but when I see my knees bending and I make my small goals, I'm able to sometimes keep pushing through the pain. I'm in the standing machine a few times a day, working up to 2 1/2 hours. Kurt took Wilbur and I out canoeing last Sunday, I'm sure we kept moving for 45 minutes in the fresh air, and it felt good, until the next day I paid for it. Poco a poca, my friend Nancy Wiley say's!
Sean Cheng who was helping me before I broke my legs has moved on in his studies with personal training and Tai Chi education (we'll keep in touch). My new plans for rehab--I hope to be accepted into the Project Walk facility in Carlsbad, CA, in June (www.projectwalk.org) ...if my nerve pain and bone density isn't a problem. This April, I'll be moving to Montana with my Mom, for my spring training before moving south. The logistics won't be easy to make the change with all my equipment I'll be needing, but my sister Kim and her husband Lance are helping me move with their truck and good sized trailer... whew! and I'm so grateful!
Lee is still here with me (My dear Mom ) and I have been spoiled rotten. We've helped each other out quite a bit this last year since I broke my legs and my father went to the big river in the sky last March (wow I can't believe it has been a year already). It would get a little lonely up in their Montana log home by herself, shoving snow, hauling the wood in, and watching the days slowly get shorter. So, we are both grateful we have each other. Love, kel
Part of a poem sent from Ro.

"Courage"

Courage is not something mysterious or unattainable....
Courage does not have to roar to be heard,
It does not mean being totally fearless and being invincible,
It could mean taking actions, taking risks, taking a stand,
Standing up for yourself, standing by your choices,
And sticking to your dreams when others jeered. ~Fion Linn

Bowen Treatment

2010-02-18T17:48:00.000-08:00

One week ago I tried my first Bowen treatment with therapist Raymond Augustyniak in El Dorado Hills...it helps move energy, balances and regulates the body etc... you may have heard of it. Therapy is given, with a 5 to 7 days in between to let the treatments take effect. One thing it has been one heck of a week--my nerve pain has magnified and I spent most my time in bed...it's been awful. I'll have to let you know how it goes during my next four visits.

I have been working hard trying to bend my left knee, the one with the TKR, it has been giving me trouble. With the calf muscle shortened, left foot dropping; turning in; a pressure sore (a good sized blister) that I need to heal before I can attempt to stand at all. I am so desperate to stand, it makes me sick. I can't help but think about how my body continues to atrophy and my bones keep getting more brittle. I have a huge battle a head...I am just waiting to get GOing!
Good night you all, love kelley
P.S. I'm looking for Darrell H. phone number and address. (he won bid on outrigger canoe painting)

Tying a Knot and Hanging On...

2010-02-03T15:26:00.000-08:00

A special friend of mine, Ro, who lives in Montana with her husband Steve, are neighbors & good friends to my Mom and Dad. Ro has been such a great advocate for me...Doing so much, from spending hours doing heavy research on her computer finding cures for nerve pain and bone building remedies, to genuine support towards my healing, by sending uplifting and inspirational quotes every Friday, for 6 months! THANKS RO!

Here is a letter she wrote after she read my last blog... I wanted to share it with you.

Hi Kelley,
I read your post the other day and am so sorry you are still having so much pain. I can't imagine how it must be to live with that every day. I wish I could find a quote that would make it all bearable. I am very glad though, that your bones have healed so well and you will be able to start back in the pool again. Hopefully that kind of movement will be energizing as well as soothing to your body. Maybe one of the old quotes might be worth repeating:
"When you come to the end of your rope, tie a knot and hang on." ~F D. Roosevelt
Try to think of all the good things (your bone growth, your favorable response to the fosamax, no more braces, and your go ahead on the exercise), think of all these things as the knot in the rope, and hang onto them.I wish I could do so much more for you. My thoughts and prayers are with you and I do believe that this pain is not permanent. Hope you have a restful evening! Love Ro

Stem Cell News Update! by Enoch ;o) Thanks again for sending the info on the first human stem cell clinical trial... I thought others might like to hear about it as well:
NZ scientists are doing the first! stem cell human clinical trial on spinal cord injured ...a 2 year trial... by using olfactory cells (nerve cells in the olfactory tissue are constantly replaced) from inside the nose and transplanting it inside the injured spinal cord. Scientist say it will help the nervous system heal itself by helping repair nerve cells; cells to regrow; restore function. I wanted to be one of there chosen participants but they were needing 35 or younger because the olfactory cell are less reliable the older you are....hummm. I'll still be interested in following there progress. Here's the website Enoch sent. http://www.thescizone.com/videos/9370/new-zealand-stemcell-trials

lately my nerve pain has been doing better and my muscles are slowly starting to get back into shape. I've been able to make trips to the pool. Also yesterday, for the first time!! since my leg braces came off from the breaks and I have been able to bend my left knee enough to get into the standing-frame, I was able to stand up (for 30 minutes); now it will be my daily ritual. I have been having some trouble with pressure sores on my left foot. Because I haven't been able to walk or put pressure on my feet for the past 6 months, it has been quite the battle trying to keep my feet from turning in (pigeon toed) and getting what is call "footdrop". During that time I wore special boots day (and night) for the past 6 months and it has take a toll, especially on my left foot. There is a fair amount a pressure pin pointed constantly on the same areas, making it very difficult to keep from having pressure sores. My job is to keep moving my feet and legs; Bending them, massaging, moving the joints and muscles. It's funny, in the mornings just transferring out of bed and onto the toilet is a workout, I feel I need to go back to bed and take a nap. It really has been non-stop-on-going care and rehab. I feel guilty writing this note now when I know I should be doing something else that will bring me closer to walking....I think I'll go take a nap and let the nerves grows ;o).

I'm tying my knot in my rope and hanging onto all the good things.
Take care and thank you for checking in, love, kelley

P.S. Darrell Hoover, I want to thank you for your generous support at the silent auction during our last fundraiser at the Sierra Nevada House. He was one of the purchasers of the outrigger canoe painting. Darrell, I would hope to get your address and phone. Thanks kk

I got an A+...

2010-01-24T14:57:00.000-08:00

It is true, when it rains it pours...the barometer keeps dropping and my nerve pain keeps going up and up!! The nerve pain has been the most debilitating for me, through this whole ordeal (2 yrs)...it is like my body has been plugged into an electrical cord that is fraid..my skin or body from the waist down is in constant pain (burning, buzz's, stabbing, electrocuted). I am so sensitive to exercise--anything I do my body rebels tenfold! It is even hard to talk on the phone at times. I wonder what I am going to do... I hate my life.

I do have good news:

Jan 12, I visited my ortho doc and he gave me an A+ on the healing of my bones.
The leg braces are off for good (no more foley catheter...I am going to miss it though, now I am going to have to worry about "cathing" on time. "In urinary catheterization, or "cathing" for short".
Body has not rejected the Fosamax (pill) for my bone density.
Able to hit the pool!
Start weight bearing.

My Mom is still here helping me, so much!... fixing food; washing clothes and bedding; house keeping; driving me to my appointments; taking me to the pool; helping me get on and off the total-gym for weight bearing exercise; massaging my legs; and she is great company.

Now, I am able to bend my right knee past 90 degrees! but only bend my left at 55, meaning I cannot ride a bike yet... I gotta keep massaging and stretching the knee constantly in hope to get it to bend. If I cannot bend my knee I won't be able to ride a bike or do knee-squats on the total-gym, which are two great ways to help with strengthening my quads, these muscles help lock my knees to stand or walk. I also have a stand "EasyStand" that just helps me to standup, but because of my stiff knee I cannot get into that either. Kurt has been thinking about building a table that tilts up so I can start standing vertically.

It is definitely back to the drawing board.

Thanks for checking in on me. I love you guys, kelley

Merry Christmas and Good Tidings to you'all

2009-12-24T12:09:00.000-08:00

It's X-Mas Eve... "a time of year to remember those who have touch our lives in so many special ways...You are ALL fondly remembered, cherished and loved today and all year through, and I always wish you good health and happiness for a new year!" For the holiday we are staying close to home. We have great neighbors, Jayne and Allen, and they invited Kurt, Mom and I over for x-mas eve dinner. Tomorrow we are gathering at home for dinner here with my sister Kim and her husband Lance.
I am so lucky my Mom is still here with us, helping me--I love her company--we even managed to find a way to get her little dog "Dudley-the dachshund" down to here from Montana so they can be together. Mom gets me going in the mornings, and right when I awake I start bending my knees for about a half hour, then hang my legs passively off the end of the bed and put the electrical muscle stimulator on both quads for a half hour, then the hamstrings...as I kick and pull, kick and pull. Recently I've had a bone density scan that showed ostopinea, one point from osteoporosis, due to not being able to stand or exercise my legs. I am hopeful to reverse this once I am able to stand and rehab. Right now they have me on a drug called Fosomax--a weekly pill that is suppose to help with bone loss, if it doesn't burn my esophagus or make my joints swell or teeth fall out first. Onward and Thank You again for your prayers and good wishes.
May all your Christmas wishes come true!
Love, kelley

Slow and steady...strong and calm.

2009-11-11T19:17:00.000-08:00

Yesterday was a HUGE day for me. I had my 4 month doctor follow-up after breaking both distal (near knee) femurs last July. Kurt took time off work and drove me...I like it when he is with me, and he can help ask the right questions. My doctor was super happy with the x-rays; the hardware was in place, and it showed good calcium bone growth...where there was not any before! REHAB BEGINS! My doctor wants me to start working on bending...SLOWLY!... using only gravity to work the knees. At present the right knee bends 60 degrees and my left is less than 30. My doctor said I have a 50% chance of being able to bend my left knee 90 degrees, enough to where I would be able to ride a bike. I had a knee replacement before I was paralyzed, and the break is at the knee level. My fall really knocked the replacement out of whack, making the left knee more complicated and difficult to repair and to heal. I will be using my rented wheelchair with my legs straight-out for 2 more months, and still no swimming. Today, I woke up and started "passively" bending my knees. I'm gonna ride that bike. Slow and steady...strong and calm. Thank you all for checking in on me. kelley

Words cannot express my Gratitude.

2009-10-26T10:02:00.000-07:00

Last Friday Oct. 23, there was a fundraiser held in my honor...but it is I, who is deeply honored to have such special friends.

Whew!!! I am completely overwhelmed! Dear Tiffany Shiro, thank you for taking that spark of a dream and making it a reality. As well as Steve Shiro, Sarah Canfield, Janet Debret, Janice Stanley, Michell Sage, Kay Osborn, Sue Campbell, Bessie Jackson, Chris Spaulding, Howard Penn...(I am sorry if I have left anyone out) words cannot express my gratitude...thank you all so much for your generous gift of love by taking the time to put together such an event!!!

There are still so many many people I want to thank for making the event possible. Everyone who gave their time in preparing for many hours, days, and months. All the people who donated the auction items and trips...I am so curious of who won the Molokai, Costa Rica, Baja, and Tahoe trips!!..thank you for the food and drink donations; merchants and businesses that sold tickets; Howard Penn for having such a great place to gather at the Sierra Nevada House; and all the wonderful musicians who performed and gave their time.

My dear friends and family, I thank you from the bottom of my heart for your support in coming to the Jam Fest benefit...I was truly overwhelmed and was so happy to have gotten the chance to say hello to so many!!...and I am sorry for the ones I didn't. I was sitting relaxing in the sun over the weekend, recovering and reflecting on our Friday night, trying to remember All the folks I spoke with or just saw from a distance hoping to say hi. Remembering off the top of my head...of all you wonderful people who are part of my life...

Thank you for coming:

Kurt and Mom "Lee"~thanks for bringing me to the event!; my sister Kim & Lance; my cousins Marvin bukema, Steven & wife Suzanne Franklin; there were friends from high school: bless you Rogar Watson; Cathy "McIntire" (love to Doris-mom) and Larry Patterson; Dana Foy Pedrizzettis~thanks for your gift and yummy candy!; Ricky Day; Gina & Leanne & Kim; Steve Abel; Ron,Leslie Vardanega & beautiful daughters; Katie "Mulligan"; Mike Paiva; Lisa & coach Bruce Boyle; Linda Chavez; Carol & Mark Water; my Girl Scout leader Donna & daughter Tony "Conley"; my trainer Sean Cheng xie xie; Vince & wife thank you for your kind words and awesome music!; River bros Jimmy Katz and John & EJ Kipping; Mike & Jan Turney; Pat Lehey; Thorn Barrager; Howie & Pamela Hammermann~a special thanks; Abigail (miss you Juju); Tanya & Sherrie; Doug Stadler & mom Heike and dad; Kelley & Eric Ahola~yummy brownies thanks!; Charles Albright; Wilbur say's hi to Lynn and Dorthy & husband; Mike & Hildi Fentress; Eric & Moira Magneson; Erin Davis; Kay Osborn and daughter Shannon & darling daughter; Jayne & Allen; Mark Hauck; Michell Sage; Sue Campbell & Mary; Randy,Jen and Tanner Calvin; Tiff & Steve Shiro and Mom; Jim Bauldini; Pat Lahey; Jonas; Louis & Janet Debret; Tom VanNord & Susan; Terry & Tommy Anderson; Tim & Patso Madden; Phil & Mary DeRiemer; Sarah & Spencer~so good to see you Spenc! and sweet daughters Cassidy & Dana Rubin; Caroline Paul & friend Wendy; Janice Stanley; Tina Coleman; Sue Norman thanks for being there for me always; Lisa Dearing~thanks; Laura Bowle~thanks & friend Lisa; Kerry & Judy; Linda Whitney; RB Clark, son & daughter Sienna (maybe we'll go skiing); Renee, aunt & mom; Miki Miyashiro; Kim & John Green; Phil Boyer and mom Patty & Beau; Kiwi Andy; Robin King; Mo Daly; Heather Snow; Wesley(hi to Mo); Brad & Bessie Jackson; Erin Jackson; Julie Stanley~thanks; Marty Booth; Bill Center; and there were others there supporting me who I met for the first time...I'm so sorry if I forgot your names.

Jeff Snyder, Oh My Gosh!! Jeff surprised me and filled me with so much emotion, I was touched and speechless. During the silent auction Jeff bid and won the most beautiful painting, that he himself donated! Jeff had acquired this painting for $3700 at a previous fundraiser held for me. And to top it off, later in the evening Jeff gave me this most awe-inspiring piece of artwork, an oil painting of women outrigger paddling in Hawaii, with velvet green mountains as a backdrop...when I look at it, I can imagine, me getting into that canoe. And as I do, I can feel the perfect warm soft water where it meets the sand washing over my feet and toes. Thank you Jeff, your gift gives me Hope and Faith that I will walk again. Mahalo, Aloha Jeff! The painting was originally donated in the previous fundraiser and painted by Ronald Macedo, a good friend living on Maui with his family (hi Naldo, Jen, Summer, & Ocean I miss you all).

"It has been 2 years since I have been paralyzed and not a day goes by when I have not thought about how deeply grateful I am to the people who have contributed to helping me physically, spiritually and financially. I continue to get better everyday, and everyday there is a new light of hope". For so long I have been wanting to write....and with that I wish to convey my belated expression of my deepest gratitude to Sue Norman, for being there for me every step of the way...and thank you for blogging my story and being my voice!

On another Note, but along the same line the fundraiser Showing "3 Women" on September 27th. I'd like to Thank very good friend of mine, Kitty "Couch" Tulga for organizing a great event; And Mark Tulga, Kathy "Hill" and her husband too, for all your patients and help...and giving your time.

To you all, thanks for helping me to be strong. I love you guys.
In Loving Gratitude, kelley

P.S. Some of the final proceeds are still trickling in, but the bottom line is, it looks like a little over $20,000 was raised for Kelley's account with the NTAF, Spinal Cord Injury Program. Kelley uses this account established through this non-profit organization to pay for her medically related expenses not covered by her insurance, including the essential and rigorous physical therapy she needs to achieve her rehabilitation goals, without jeapordizing the public assistance she is also receiving. Your tremendous efforts and generosity have given her renewed hope and opportunity for recovery.( p.s.s. I got one of the Costa Rica trips in the auction!)Sue

Jam Fest Fundraiser for KK

2009-10-20T19:56:00.000-07:00

October 23rd, 6:00pm, the Sierra Nevada House in Coloma is hosting an invited Artist Musical Jam Fest. Music, silent auction, food & drinks.

The musical line up sounds GREAT, with music starting:
6:15 with local talent Tiffani Shiro, Robin King & Thom Bently
6:45 Robin King - Singer
7:15 Laura Bowly - Acoustic singer/songwriter
8:00 "In Full Swing"
8:45 Vince Di Maggio - Cameron Park soul/funk/groove musician
9:30 "Call Me Ugly" - Raggae band

Silent Auction options and item for KK's benefit:
Costa Rica, Hawaii, Baja, Tahoe and the Russian River, all vacation and/or trips you can bid on. In addition to these travel options, will be art and jewelry items, interesting local items, and tasty wine and food gifts. On the more practical side you may bid on construction help, organizational assistance, or a Camp Lotus pass. With over 70 items, there is surely something for every taste & budget...you can feel good about your choice, since bidding is just another way of donating!

$25 donation at the door & Kids 10 and under free. Includes hors d'oeuvres and beer & wine available for $3 while it last. Sierra Nevada House has special dinner menu offered for purchase.
Buy a ticket early, receive a complimentary beverage. All proceeds from this event go to assist Kelley in her recovery. For more information, view this YouTube interview or read her story in the Sacramento Bee.

Tickets are available in
Coloma-Lotus: at The River Store, Sierra Nevada House, The River Shack, and Gringo’s.
Placerville: at The Bookery, Main Street Music, and Fitzpatrick Physical Therapy.

Tickets will also be available at the door. Please click to download a flyer for the event (PDF). For more information, contact Tiffani Shiro at (530) 642-8517. [website]

I have the feeling this will be an event not to be missed. Kelley will do her best to be there.

2009-09-28T21:09:00.000-07:00

About 2 weeks ago Kelley had her first follow up visit with the doctor who performed the surgery on her broken leg, and the news is good!. He says it is about half way healed, and he is very pleased with how it looks. She still has about 2 months to go, but the end is in sight. She is going to be able to ease into some exercising now, albeit very gradual and easy at first, just working on some easy upper body mostly and moving what she can in her lower body while sitting in the chair. She also had a great visit with some very old friends at her high school reunion last weekend, and about 20 of them came the next day to see the "3 women video". It was her first outing (except for doctors visits) since she broke her legs, and she really enjoyed it. She is planning on starting to go to the local gym with her mom this week, so moving forward....yet again.

I took advantage of an unplanned car break down in Sacto yesterday to help her out with catching up on her medical bills through the NTAF account. Good news on that front, thanks to the raft trip and other donations. Got all caught up on her bills, with a comfortable buffer for a little while at least. The Coloma fundraiser will really help ensure she can cover her expenses for the next year of rehab that hopefully can really kick in by around mid november. She also was able to finally complete the process to get her medical coverage through Medicare (primary insurance) and the state MediCal (secondary insurance) program and drop her Blue Cross account. This will probably reduce her regular monthly medical expenses by almost $1,000 a month (between monthly premiums and drug and doctor co-pays)... and her insurance was good....!. Sure gives you some perspective on this whole health insurance debate. She had to become financially destitute to qualify for Medicare and MediCal, and with the cost of paying for regular insurance with a condition like Kelley's you are about guaranteed to become destitute sooner then later.

But Medicare and MediCal still will not pay for much of the alternative and aggressive therapy, and supplements Kelley really needs for optimum recovery and health. So the NTAF account has been, and still is, critical for her since it can pay for that support without affecting her MediCare-Cal status (since the NTAF account is non-profit and only pays for strictly defined medically related expenses not covered by insurance).

Thanks to everyone that has provided this well timed and much needed support! Kelley, Kurt, Sean, Leona (Kelley's quiet but capable super-mom), and I hope to see many of you in Coloma in a few weeks. Sue

2009-09-11T21:30:00.000-07:00

Well its been more than a month so this blog is a long one. The Tuolumne River Fundraiser was a resounding success. Many thanks to Bob and Jane Ferguson, the owners of Zephyr Whitewater Rafting who hosted this trip, and as a result will be donating approximately $6K to Kelleys NTAF account. We had 15 clients, largely consisting of an extended women’s posse of Kelleys friends, (and their friends) , and “The Family”. The family consisted of one of Kelley’s old friends Jim Elliot, his wife Laurie, and their two sons. The group energy was just great, including both the volunteer guides ( Joe Dengler, Didi Cioffi, and Janice Stanley) and the paid Zephyr guides (Bridget, Neva, and Rueben). The highlights of the trip for me was 1) paddling in the front of Joe’s boat, who since he hadn’t seen the river in ten years, ran it as a read and run exploratory, with precise and exacting moves from slot to slot. As he repeated at the top of each rapid, “Ok, now for this one… we are going to stay on top of the water…and go between the rocks.” Great fun, and created a totally unique “T” experience for me. 2) the joy of sleeping under the stars on a California river canyon in late august, in what feels like the very heart of mother earth and 3) watching Ben and Jesse Elliot just do what they do, particularly hucking the cliffs at the North Fork pools. Jim and Laurie have raised some adventurous, and socially engaging young men that were simply a delight to have on the trip.

Of course my mind was filled throughout the trip of the many memorable experiences Kelly and I have shared with other friends on this river. My first trip down the Tuolumne was during what I think of as the “Summer of Love” of California river rafting, in 1983. This was the first year I came out to California to work on the river, and as many of you may recall that high water year, California river running was just outrageous, I was completely enamored by the whitewater and whitewater community, and after that summer knew I was moving to California! The peak experience of that season was a 40 person private trip of south fork river guides on the “T”, still running at over 5,000 cfs in early August. There are so many stories from that trip. Lets just suffice to say that it was just one of the first of many times when Kelley and Julie helped push me outside of my comfort zone, as I was drawn into their constant quest for adventure.

Watching the new generation of young river guides on this trip definitely reminded me of those magical years, and of course the tragedy of how much life has changed for Kelley. Joe and I stopped and visited Kelley on our way home, to deliver the tip money the guides wanted to donate and tell her about the trip. Of course we reminisced a little about the “summer of 83”. Kelley is hanging in there, but this is obviously a tough time. Not only is she on a complete hold on rehab, but the braces her legs are in seem to be stimulating a lot of nerve pain. Day by day, thats all she and her loved ones can do.

Upcoming Fundraisers: Some other news to report regarding fundraising. Sue Campbell hosted a small fundraiser in Anchorage, Ak, showing the 3 women DVD last month, and estimates they raised about $1.5K for Kelley's medical fund.

September 27th at 1:00 pm, at the El Dorado High School, Kitty "Couch" Tulga, a friend of Kelley's from High School, will be organizing the fundraiser - showing the DVD
"3 Women 300 Miles" - $10 donation at the door.

An invited Artist Musical Jam Fest, for October 23rd, 6:00pm, at the Sierra Nevada House in Coloma - $25 donation at the door. Tiffany Gomes and a group of folks from Coloma are organizing this Jam Fest Fundraiser and the line up sounds GREAT, no one famous, but talented and entertaining for sure. I have the feeling this will be an event not to be missed.

And lastly please check out the new link at the left of this blog. It features a short 3 minute video our friend Trish produced, to help tell Kelleys story. Hope to see many of you at the October event, to be with Kelley on the 2nd anniversary of when this journey all began for Kelley. It helps to know she is still not alone on this path. Sue

2009-08-06T21:39:00.000-07:00

Well Kelley is healing. She had her first check up last tuesday and the doctor says the xray shows that the bad fracture above her prosthetic knee joint is healing. This is the one that they were really worried about. The femur broke just above her prosthetic knee, so they inserted two long thin metal rods half way up her femur that criss cross and "pinch" her prosthetic knee. They then pinned these two rods just above the knee joint so the rods really squeeze it. This is all supposed to knit the whole thing back together so her femur reattaches to the prosthetic knee. Complicated... and so far it appears to be working. Kelley spends a fair bit of time in her new chair, but is still taking it very easy. But at least she can move around the house, get outside and visit with friends. In this photo she and her Mom are visiting with Julie and Abigail. Wilbur has a little basket in back of the chair that he just likes to lay in so he always goes where Kelley goes.

Some funding has been coming into the NTAF account, thank you to everyone that has contributed, it sure helps with the insurance premiums and copays. The Tuolumne trip has filled! so that will also be helping making a dent in some of the backlog of bills, and hopefully help pay for a badly needed wheel chair ramp to the house. Please continue to send her your good thoughts, meditations,prayers, and emails, and stop by and visit. Your positive energies definitely help. Sue

2009-07-21T21:23:00.001-07:00

How it happened. A lot of folks have been asking, and guess it’s better if Kelley doesn’t have to tell everybody the story over and over. She and Sean were leaving the house to go on one of their bike rides. Their house unfortunately is situated at the top of a short and steep slope relative to the street and sidewalk. There is no easy way in and out of the house for her, but in her knobby tired wheelchair she had developed the confidence to switch back down her yard to the sidewalk. It’s a class 4 (maybe 4+) move for sure, but you know how it is when you’ve developed some skills, and done something often enough, just doesn’t seem that risky any more. So she left Sean to lock up the house while she went down the slope. But right near the end of the slope her tire dropped into a large fist sized hole that she did not see or know was there, and the abrupt stop pitched her out of the chair. She came down on he knees in a deep knee bend. It is disturbing that this fall caused so much damage, because it just doesn’t seem like the impact was that hard (she went down on grass). But she does have very little muscular support to absorb the shock, and we just aren’t sure at this point to what degree the condition of her bones may have become compromised by the events over the past year. It will be one of the things that are examined in her follow-up to this accident. More later, Sue

2009-07-20T22:46:00.000-07:00

Shock, despair, disbelief, heartbroken, angry. These are a few words to describe the range of emotions Kelley as been experiencing this past week, and have been shared by her friends in your voicemails and emails. I just spent a day and a half with her in the surreal time warp that is the University of Davis Medical Center. I don’t know how to describe the experience, but I am not the one that has had the traumatic injury, am not on drugs, but still am in a perpetual state of feeling, " what the f***ing hell is going on"? Can you imagine how Kelley feels? After many long hours interspersed by brief interludes of various peoples of different roles and responsibilities popping in and spouting off various confusing, conflicting, and lacking amounts of information, we finally got a few minutes of time with the Doctor who performed her surgery, and will be doing the follow up on her recovery. He is expecting 4 to 5 months for her fractures to heal. During this time she is to do virtually no activity with her legs, so her rehab is essentially stalled during this time. She came home from the hospital this afternoon, and we started setting up her situation for an extended period of bed rest and loss of mobility. I will post more information over the next several days. Please do call or email, and make plans to stop by if you can. She could sure use the support right now friends. She is still Kelley, staying strong, trying to keep her justifiably earned meltdowns brief, and looking forward. Lets help her get through this. Sue.

2009-07-17T19:34:00.000-07:00

Kelley has had a pretty major set back in her life. Last saturday she "tripped" in her wheel chair, and in the fall ended up breaking both her femurs. She did not know her injury was so bad until her legs started swelling a couple of days later. She just got out of surgery this evening, and the doctors have told Kurt it went well. She has some new pins in her legs, and cannot put weight on her legs for 6 weeks, so she will not be able to do her high level physical therapy for some time, and undoubtably will be basically bed ridden for awhile. Her spirits are still strong, although she knows she is in for a tough couple months ahead (as if her life has not been tough enough). So please give her a call, and for those who live close, arrange to stop by if you can, and maybe offer to run some errands for her and Kurt if they need. And of course the NTAF fund could still use a boost, since there will undoubtably be some costs associated with this situation. Will keep the blog posted as events unfold in this new unforeseen detour in Kelleys Journey to Recovery.

2009-06-30T15:25:00.000-07:00

As I said in my previous blog Kelley and Sean are doing lots of biking these days. Since this is assisted biking and they are going for so long (10+ miles some days) Sean has figured out how to hook his bike up behind kelley's so they are kind of doing a tandem thing. Thought you might enjoy the photo. Also want to get the word out about another fantastic river trip offer. Ken Streeter is offering a 4 day Rogue River Trip for $750, from September 16 through September 19. If you are interested in learning more about the Rogue River, or signing up for this trip , please go on Kens website at www.wildernesstrips.com. Spaces are limited, so this trip may fill pretty quickly.

2009-06-21T21:18:00.000-07:00

Haven’t seen Kelley in a while, but we have been in touch. Her last email sounded very positive. She is able to crank a spin bike in the gym for 15 minutes on her own, and has been doing long hours of walking in her braces and walker, and assisted biking on her tricycle. Sean is still working with her almost every day, and at this point is working just for basic living expenses since we have run out of money in the NTAF account. We have planned some rafting fundraisers for this summer to help eventually reimburse Sean fairly for his invaluable role in Kelley’s recovery program. She has a relatively narrow window of opportunity to make the recovery that is possible for her, and this daily intensive training with Sean is the key to making the most of the ultimate outcome. We think the next 6 months will be especially key.

The raft trips being offered through the generous offers of outfitters are a two day Tuolumne trip on August 27th and 28th , and a one day + camping trip on the South Fork of the American on July 31st . The South Fork trip will have a women’s trip group, as well as a separate kids trip group. If you are interested in either of these trips please contact Zephyr Whitewater for the Tuolumne Trip, and Mariah Wilderness Expeditions for the South Fork Trip, or you can contact me at susannorman@att.net for more information. We also may need a few more volunteer guides for these trips, so please contact me if interested in doing that as well. I know I had said it before, but I will say it again, Kelley’s focus and ability to work through (and sometime having to just wait out) the nerve pain is something I think about almost every day, and keeps everything in my life in perspective. Makes the challenges I face in my life seem so easy in comparison. Keep sending her those positive vibes. Happy Solstice, Sue

2009-05-22T11:58:00.000-07:00

Kelley saw many of you river folks recently at a memorial gathering for our friend Lars, on the banks of the American River. Was great to see such an incredible gathering of the river community, and sad and powerful to hear and share stories of our friend Lars. It was also great to keep looking over at Kelley and see her surrounded and visiting with so many of you. Her life is currently very isolated in some ways, and she misses the river and its community tremendously. Hopefully now that she is driving she can get out more. Thats right, Kelley drove up in her "accessible" van from Sacramento, and picked Julie, Lisa and I up in Coloma, and drove us up to Chili Bar for the memorial. It was her first big outing in the van, and it was only after I got out and really started looking at the hand controls, that I really realized that naviagating the steep curvey descent down to Chili Bar, is a bit more challenging with that set up, then regular cars. The gas and brake are on the steering wheel. But she did great (of course).

So unfortunately our San Juan River Trip fundraiser had to be cancelled, (lack of sign-ups) so am working on other local options instead. Keep tuned, next blog will hopefully announce dates for South Fork American, Tuolumne, and Rogue River fundraising raft trips. Finances are tight,and would like to try and keep that from getting in the way of Kelley's progress. Kelley is still making hard fought progress,with the amazing Sean. I asked Kelley to send me this letter she got from Sean, after she had had a particularly bad day fighting nerve pain, so she could do some physical therapy with him. Their work together is hard, painful... and beautiful....

"Hi Kelley,

Here are some photos just were taken after the big pain during the whole hard day, I don't think it's a bad day, it is still a recovering day and developing day.

Remember, we are making a miracle!

Don't worry about the money, it would not stop the miracle.
Don't worry about how fast or how slow it is, it's not our business, it's God's business. Our business is Keep going, going and going, never stop!
Please clear your mind, concentrate on it!

What is miracle? there are many ways to explain. one way is below.

it would not happen today, many people stop at today;
it would not happen tomorrow, many people stop at tomorrow;
it would not happen next week, many people stop at the week;
it would not happen next month, many people stop at the month;
it would not happen next year, many people stop at the year;
it would not happen in the time people expect;
it would happen when people completely forget ask the time, only concentrating the hard work, ....

See you tomorrow,
Sean"

2009-04-10T17:35:00.000-07:00

I visited with Kelley this past weekend. She and Sean have been continuing to make progress. She walked for about 15 minutes, with her leg braces and walker from the living room, through the kitchen around the bedroom and back. Her progress is slow but deliberate. This is still walking for therapy, doing weight bearing exercise to rebuild nerves, muscles, connections…so that eventually she can walk for transport. After some massage and exercise, Sean then took her out on her new tricycle. Kelley straps her legs into this 3 wheeler, and with Sean providing a slight assistance by pulling on a strap, Kelley peddles.. The nerve pain is still bad, though it cycles with good days and bad days. But Kelley continues to never take a pain free moment for granted, and uses those for all she’s worth.
I am continuing to work on some fund raising events for her (San Juan River Trip, maybe a film showing in Truckee). Her NTAF fund is currently tapped out. Sean works at a very good price, but because he works with her so much, it still adds up. If you feel like you can help out, please send a contribution to her NTAF account, following the info presented on the side bar of the blog. Sue

2009-03-15T21:11:00.000-07:00

Kelley has been spending more time in her leg braces, as you can see in the picture. But the last couple months have also been preoccupied with her fathers failing health. After visiting him for a week several weeks ago, he passed away last Sunday from cancer. She went back up to Montana to try and see him before he went, and has spent the last week with her Mom. We also just found out a good friend of both of ours has also passed away from a very aggressive cancer. A very sad time.

I would also like to let everyone know about a river trip that is planned this year as a fundraiser for Kelley, through Canyon REO, on the San Juan River. We had a very successful fundrasing trip last year with OARs, and Donnie wants his shot at contributing too. However the focus of this years trip will be different. For one thing Kelley is going to make every effort to go, accompanied by her Mom and a family friend, and hopefully Kurt and Sean. So besides doing a trip with Kelley and her loved ones, we are going to make the focus of this trip, a parent trip, for those of us who are realizing we may not have much time left to do this kind of cool thing with our parents. The San Juan, for those who don't know, is a beautiful and mellow southwestern river canyon. The launch date is June 16th, with 3, 4 and 7 day options, the price is $800, and Donnie is donating all profit to Kelleys fund. If you would like more information about the river, please google the Canyon REO website. If you are interested in signing up for the trip, just email me (susannorman@att.net) , and I will send you the waiver forms, and deposit invoice needed to get you started. We are looking for a $250 deposit by mid April. Remember to tell those you love, that you do.... Love, Sue

2009-01-31T09:37:00.000-08:00

Well we had a fundraiser for Kelley last weekend here at the Lake Tahoe Community College. Showed the 3 Women/3 Hundred miles DVD and our outrigger canoe club hosted a social mixer with appetizers and soft drinks before and after the movie. Almost sold out the 200 seat theatre. I have been hearing all week how moved my friends and co-workers were by the film and her story. Very generous donations were received which will help replenish Kelley’s NTAF account. If anyone reading this blog wants to host a fundraiser please feel free to contact me. I can line you up with a DVD, info for setting up donations through the NTAF, and possibly free event insurance (if held in California). The best part is Kelley came up to attend the fundraiser, and visit with folks afterwards. I also got a chance to meet Sean finally, Kelley’s full time therapist, coach, and ‘angel’. He is a gem. So attentive and focused on Kelley’s needs and capacity, and a personality full of exuberance and light. The next day, Sean did a workout session in the morning with Kelley at my house, then we took a drive out to Emerald Bay to show him Lake Tahoe. Kelley can practice standing with a Walker now in her leg braces, so she doesn’t need to travel with the easy stand to get the weight bearing exercise she needs on her legs when she is traveling. My floor was a little to slippery for her to walk with the Walker, but she does do this at her home. She also told me this week that she went to the gym and was able to turn the pedals on a spin bike on just her own power. So the gains continue, slowly but surely. The photos with this blog are of Kelley doing some pool therapy, and she can “pedal” her legs pretty well in the pool too. So the gains continue, slowly but surely.

January 6, 2008

2009-01-06T20:41:00.001-08:00

Well its along time since the last post, but wanted to wait until I got some good beta about the trip to Johns Hopkins Hospital by Kelley and Kurt. Kurts description is below, and the photos show Kelley standing and walking in her new leg braces, and working through some nerve pain with her love cell Wilbur. Nothing like a little puppy love to help you through the tough times. Sue.

Kurts says: " Our trip to Johns Hopkins was very positive overall. We went to two different centers. One was for physical rehabilitation (Kennedy Krieger Institute) and the other was the formal Transverse Myelitis medical group at Johns Hopkins Hospital. Both centers did a full workup on Kelley, including bone density scan, Optic nerve testing, full bloodwork and another spinal tap for a special test. We are still waiting on several of the results. However, all tests that are concluded show that Kelley is very capable of performing the hard work she needs to do in order to recover. Kelley had a full week of physical rehab at the Kennedy Krieger Institute. She learned several new exercises there and came home with prescriptions for an improved wheelchair backrest and seat. Most importantly, they also prescribed an electronic muscle stimulator unit. This will help Kelley combat muscle atrophy during the time that she needs to regain motor function. At both facilities, we welcomed the staff's willingness to look at Kelley from a fresh perspective. And although there are so many variables and mysteries about Kelley's condition of Transverse Myelitis, we did feel comfortable that these people really know what they are doing. I think that the greatest and most lasting impression gained was the positive energy that everyone projected towards Kelley's recovery. Nerve pathways can grow back in time, and the limits to this are very much related to the individual's capacity for very hard work. Getting such a positive a feeling from the staff has raised Kelley's own determination to an even higher level."

November 24 Update

2008-11-24T19:47:00.000-08:00

Just wanted to post these images and another update before I leave on vacation for a couple of weeks. These photos were taken by Kurts mom Lou who was out visiting during my last visit, of the amazing hand bike (and amazing Kelley). I talked to Kelley this weekend and her time with Sean, the new full time therapist has already been extremely valuable. She sounded more positive then I think I have heard her since this whole thing began. He is doing physical therapy, massage, reflexology (on an almost daily basis) and getting definite results. She said her movement, sensation, and muscle tone, have all noticeable improved. And he fully believes she will walk again. It was so exciting to hear the excitement in her voice. One of the things I have always valued in my friend Kelley is her ability to "work" when we were pursuing atheletic goals in the past. She just never held anything back. It always pushed me to go a little harder myself, to see her laying it down like that. And watching her work over the last several months, believe me she still has that strength. But I think the lack of consistency, because of the lack of continuity with us well meaning but unskilled (and sometime unavailable) friends was holding her back. I think Sean is allowing her to work at her full capacity, in ways that are balanced and progressive. I can't wait to meet him and see her improvement with my own eyes. Anyway Kelley will be going back east to the Johns Hopkins Transverse Myelitis Center during the 3rd week in December. I will post after I get an update from her after that experience. In the mean time drop by or drop her a line if you get a chance...and keep the vison of kelley walking in your heart and mind . Sue

November 15 Update

2008-11-15T10:06:00.000-08:00

Well another eventful month has gone by… ..This photo is a mold of Kelleys legs, that will be used to make her some high tech leg braces so she can safely start walking again. At first this will happen between parallel bars , and then….. beyond…... Kelley continues to work hard at her PT, in between pain management, which is still a constant challenge.

She recently got a great new recumbent hand bike, will try to get picture of that next time. We did go out about a week ago for its first outing. She can ride right from her house to the bike trail along the American river. We got carried away and went out for about an hour and a half, it was one of those beautiful perfect fall days in Sacramento. Unfortunately some unused muscles got a little over worked and she’s been having to tend to some tweaks in the neck, going to have to taper a little more next time. But she can fly in that thing.

And she also now has some fulltime help for awhile. A few blogs back I told you about a woman named Margorie who also has TM, and has had remarkable recovery. A lot of her success she owes to an interesting fellow named Sean (a chinese scholar, and self taught physical therapist) who came to work full time with her, integrating physical therapy with massage. He has recently finished up working with another client and now will be working for Kelley. He will be living across the street from Kelley, and coming to work with her 6 days a week, 6+ hours a day. The consistency and professional capability Sean will provide for Kelley is going to be huge I think.

We will be planning some more fund raising events soon, to keep the coffers in Kelley’s NTAF account sufficiently funded. This will include a film showing of 3 women/300 miles in South Lake Tahoe, and scheduling some more donated outfitter river trips for next spring and summer. Keep in touch with this blog for more news on that, as well as Kelleys progress over the next few months. She is still determined to walk again, and we invite you all to do what you can to help in that journey, whether its donations, your prayers, coming by to go for a bike ride, drive her to appts. etc.….Thanks, Sue

October 11

2008-10-11T17:07:00.000-07:00

Well this past month has been busy for Kelley.... we went to Julie Mungers wedding at the end of September where she saw alot of people from many of the past worlds both Julie and Kelley have been a part of over the years. And of course many people who have not yet seen Kelley since this all happened. It was of course great to see everybody, but also frustrating to not have much mobility. The new wheel chair tires helped alot, but still pretty tough negotiating "natural" ground. We were both in the ceremony and it was truly special to be part of such a wonderful event in our good friend Julie's life. Afterwards Kelley came back to Tahoe with me, since Kurt was out of town for a few more days on a trip to Minnesota. Fortunately Kelley was able to bring her "easy stand" , a great machine that enables her to stand up right in a supported manner. So she was able to recoup some from the weekend, and start getting back into her exercise routine a little bit. Fortunately the weather was great, so Lisa and I took her to a handicap accessible trail next to Lake Tahoe at Taylor Creek. This trail is absolutely gorgeous, the kokonee salmon were in full spawn, and we even got to watch an 8 month old bear cub play around in the creek trying to catch a salmon for about 20 minutes. Its been the closest to nature I think Kelley has been since this has happened, and she was soaking it in....I then took her to her "killer" thursday, which starts with a visit to Dr. Zhu in the morning (gots lots of needles in her lower back for the first time), and then to SCI FIT. I am amazed at how hard they work her in her 2 to 2.5 hours there. Pretty much continuously moving from exercise to exercise, and much of it is supported weight bearing. The research is really showing that weight bearing exercises rebuild the nerve cells and brain connections more quickly, and Kelley continues to show progress. Her left foot can push pretty darn hard now, and she said that last week the trainers at SCI FIT really feel she has made some significant progress and can really see some quad engagement now. Unfortunately killer thursday is followed by painful friday, as it seems clear that the exercise does aggravate the pain response....and so it goes. The last news is that her adaptive canoe seat came in, and Kurt bought a 2 man canoe that is suitable for them to use. So they are hoping to take it out sometime this weekend. Although Kelleys life is not easy (and that is an understatement, believe me) she continues to focus on the positive and looking forward. Til next time, Sue

Sept 15 Update

2008-09-15T22:15:00.000-07:00

The latest news is Kelley has purchased some new wheels, both vehicle and chair. She has acquired a handicapped accessible van, using the NTAF fund. It still needs a few additional retrofits for her to use, but hopefully within a few weeks she will be able to start driving herself around sometimes, and gain some independence she is more then ready for.

We will be going to Julie Mungers wedding in a couple of weeks, up by Taylorsville. So we also got her some more beefy tires for the chair, so it would be little more suitable for "off road use" in preparation for some cruisin around on Julies property. She said it already has been a noticeable improvement, as the tires grip better even on smooth surfaces, Then planning on her coming to hang out with "Team Tahoe" for a few days afterwards, since Kurt will be out of town for a few days. Plan on keeping her active and working out.. hopefully to include some Lake time.

I saw her about a couple of weeks ago as I was passing through town, once again there was small but noticable gains in her motor function, including increased movement in one of her feet, and definite firing in her left glut. Her home gym is pretty well set up for her to maintain her exercise regime, although of course it is always more fun and motivating if she has folks come by and visit and provide minor assistance while she is working out. So please do not be shy about offering to be a work out buddy. She continues to work hard, and still seeing gains for her efforts. Later, Sue

Pictures tell the next chapter of the story....

2008-08-09T12:16:00.001-07:00

Well the pictures say it best, Kelley (with Wilbur et al. support) is continuing to work hard. The new PT facility has definitely got a good rounded program for Kelley to continue to work towards her goal of walking again, and overall strengthening. She is getting down there at least once a week, still may try to get two days in when she can. Also doing alot of time in the pool at her and Kurts new house. Water is a comfy 92 degrees so she can spend a couple of hours in there working on a variety of leg movements. And this past week she participated on Team California in the Adapted Mixed division at the World Championship Outrigger Sprints races in Sacramento. This is something that did not see very possible even a few weeks ago... but things got just good enough just in time. Needless to say she still has better form then most .... the Team Cali coach was blown away by her reach (Kelley is in seat 1). There were 6 teams competing (Hawaii (2 teams), Team Cali, Canada, Italy, and ?). Team Cali came in 3rd in the 1000, and 2nd in the 500. We will be ordering her an adaptive chair this weekend, that can be quickly locked into any canoe seat. The Pain is still a big issue, but Kelley's ability to just keep working through it is just unbelievable. In the over a month since I had seen her last, I can definitely see marked improvement in her overall strength, and small but noticeable improvement in her legs. Drop her a line when you get a chance and let her know you have seen the pic's,.... as we continue on this journey....

July 19 Update

2008-07-19T09:10:00.000-07:00

I have not seen Kelley since the last blog, but she been getting some key help from others. Thanks Tiffany and Caroline for joining in the effort the last couple of weeks (and of course Maria continued commitment). The following is an exerpt from Tiffany's message on the caregiver site, that gives you an idea of what is going on...

"First, I wanted to thank Kelley and Kurt for welcoming me into their home. I enjoyed spending time with Kelley again. I know sometimes when a persons life is going through multiple changes (buying a new home, moving, and learning to
walk again) its hard to have house guests. It takes energy to explain all the new experiences with each and every person that comes in wanting to visit and help. I marvel at Kelleys strength and patience with herself and others.
She is putting her abundance of energy into healing, and getting herself moving again. She and Kurt are doing such a great job to get all the equipment together so Kelley can do the most physical therapy possible. Shes away from
her computer often, not because she doesn't want to communicate with her friends , but because she knows how to completely focus on her healing. She voices often her gratitude for her friends." ....Tiffany

Kelley more or less has a routine she is trying to maintain. Tuesdays and Fridays she is trying to spend in the east bay with either/and Dr. Zhu (scalp acupuncture) and SCI-Fit (focused therapy center for spinal cord injuries). These are long days...the rest of the days she is in Sac either doing PT at her local facility, at home, or occasionally paddling. The goal is to keep moving as much as possible, to bring the connections back between her brain and her muscles, and recover from the atrophy in her lower body. She feels like she is continuing to get stronger, and her latest activity has been crawling. As she says "it ain't pretty" but she can do it, and it works alot of core, upper body. and upper leg I assume.

Anyway do call her to check in.... particularly if you want to drop by and help her with errands or doing her PT. She doesn't have much time for plain old visiting, but there is usually always something you can help her with, and have the opportunity to visit at the same time. Thanks, Sue

June 28 Update

2008-06-28T19:49:00.000-07:00

Well last couple of weeks have been busy for Kelley. She spent last week and weekend down in Santa Cruz and San Jose, spending much of that time at Dr. Zhu's office. Kelley does have some muscles in her lower body working ( I can see alot of hip, and some hamstring), and she is learning a whole regimen of exercises to continue to try to rebuild the connections between her brain and those muscles, and get them to work stronger and more reliably. It is hard, tedious work, and frustrating for her when she can't get the response she is focusing on. And of course this all has to be accomplished within the contraints of her medications and pain levels. The bottom line, it ain't easy.....

She also found out about a very progressive physical therapy clinic in Pleasanton (thru another patient of Dr. Zhu's) called SCI-FIT, which specializes in spinal cord injuries. She had her first appointment with them last thursday and was very impressed with what they were offering, with even more sophistication in an exercise regimen suited to her goals. So we are still trying to figure out the logistics that will enable her to get the treatment she needs, with a part time place to live in the East Bay, and more reliable coaches/trainers/care givers that can get her where she needs to be between SCI_FIT and Dr. Zhu's and help her with her exercise program.
Lastly, Kelley got some good news about her lastest MRI which she got on Tuesday. Her neurologist said it looks very good, with almost all the inflamation resolved her spine.
She has a week in Sacramento right now, but will be starting up again with SCI-FIT and Dr.Zhu towards the end of next week. We will keep you posted on her progress, and please send her your encouragement to stay strong...its overwhelming sometimes, but we are continuing to try to just take it one step at a time...... .
Sue

Need San Jose Housing

2008-06-15T17:40:00.000-07:00

As it turns out the place we thought we had in San Jose, will not be available
for a few weeks, and after that would only work if Kelley had a more or less full time
companion. We are not sure yet if we will be able to arrange that or not. In the mean time
would like to explore other options. We are basically looking for someone who would be
willing to have Kelley as a part time room mate. She would have to be able to have a guest
sometimes, would probably only be there 3 to 4 nights a during the mid week, and the
house would have to be handicap accessible. If anyone has any ideas about this please let me know. If you do recommend some one please talk to them first before contacting me so I am not calling folks that have not been told what the deal is. If you do talk to someone who is interested in helping out with this please either email (rivgu@aol.com) or call 530-400-9888 with who I need to talk too. Thanks, Sue

Hold the Vision

2008-06-13T08:38:00.000-07:00

This is the vision I would like everyone to hold for the next few months. This is Marjorie, the woman I told you about in the previous blog. Hopefully in the not to distant future this can be Kelley. Kelley is now on her 3rd day with Dr. Zhu. She did 3 hours on wednesday, 4 hours on thursday, and probably will do similar today. She is a veritable pin cushion of needles, going through a progression of movements. As an example , yesterday Dr. Zhu put her in knee braces between the parallel bars, with him sitting behind her on a stool, and had her balance on her own, and take a few steps forward and a few steps back. This guy is pushing her as fast as Kelley will go, and we all know Kelleys ability to "cowboy up" when there is work to be done. Don't get me wrong she still has a long ways to go, in the progression of where she will want to end up, the steps she took yesterday are little and she is using any muscle she can to make it happen. She has alot of hard work ahead to get to the point where she can walk across a room. But what she did yesterday is huge compared to where she was last week, and hopefully step by arduous step she will get there. Huge thanks to Barb and Jackie and Dan who have been with Kelley during these first critical few days with Dr. Zhu.

On another note, I think we have already found the perfect living situation for Kelley in San Jose, so thanks for the other offers, but we have found a fully handicapped accessible home that she can start using immediately.

Lastly I just heard back from George Wendt at OARS, and he has donated a little over $19,000 to the NTAF from our recent Yampa trip!. This could not have come at a better time. Very little of Dr. Zhu's bills we be covered by insurance, and even though his rates are reasonable, the sheer volume of time she will be there will add up. But at this point we should be in pretty good shape for a little while. Over the weekend I will be posting information on this blog regarding all the future fund raising raft trip options that have been offered by outfitters over the past few weeks. So stay tuned.... Sue

Big News!

2008-06-11T22:55:00.000-07:00

Well folks some big news to report. We had a successful fundraiser in Santa Cruz last weekend. Over 250 people (sold out crowd) showed up to see the “3 Women” DVD, and bid on items in the accompanying silent auction. Many people contributed to this event in different ways, to many to acknowledge all. But several people need to be mentioned who were key. Jane Driscoll, Jackie Nunez, Barb Roetger, and Laura Bowly. These gals did the bulk of the work, finding auctions sponsors, creating and posting marketing materials, venue space, AV equipment, etc. Also thanks to Kim Powell (of Blue Water Adventures) for hosting a sea kayak trip earlier in the day, of which all proceeds went to Kelley. Our estimated “take” from the event was about $10,600.

But the best thing about the event is that I met Marjorie. Marjorie was diagnosed with Transverse Myelitis a little over a year ago. She is walking today. With the help of canes,but walking. Her story is remarkable. She was told by the doctors she had very little chance of walking again (1 in 13,000) and probably wouldn’t even live very long. She initially was more disabled then Kelley, as her arms and speech were also affected. The key to her success was initiated by a visit to an acupuncturist is San Jose, Dr. Zhu, Dr. Zhu told her after her first visit that she would be able to walk again if she was willing to work hard over the next 6 months. Which she did, and her recovery has been amazing and she is still working at it.

Dr. Zhu specializes in neurological disorders, and is at the cutting edge. After listening to Marjorie’s story it became obvious that Kelley needed to see him. I told Kelley about it on Sunday, she called and made an appointment on Monday, and had her first treatment (3 hours) today. I don’t know that much, but talked to them a little bit this evening. Barb and Jackie came up from Santa Cruz to be with Kelley and just help listen and absorb the information. Then after, Barb gave Kelley a massage and cranial sacral treatment. Evidently the results were encouraging, and Dr. Zhu is recommending that Kelley work with him 3 to 5 days a week 3 hours a day, for 3 months to start. I believe he was encouraged by what he was able to assess and stimulate regarding Kelley’s current function and her obvious ability to work her ass off.

Obviously there are a lot of details to work out, but this is the most hope I have felt for a long time. Kelley will need to be able to move down to the San Jose area for at least a few days a week for the next 3 months at least. If anyone reading this blog has any connections as far as possible accommodations please email me at rivgu@aol.com. Obviously needs to be wheel chair accessible. Also would like to develop a support network of folks that can help Kelley get around, get food, just spend time with her when she in the area. If you would like to be part of the San Jose network again please email.

I can’t tell you how good this has been for Kelley. She has been so ready for someone to believe and tell her that she can get better (and not just her friends, but a medical professional). Dr. Zhu has been the first professional to offer that opinion to her, as he did to Marjorie, and Kelley is ready to go. Will keep you posted, as things progress, I believe she is staying down in the area to see him tomorrow as well. Later then, Sue

June 5 Update

2008-06-05T20:32:00.000-07:00

I know it’s been a long time between posts, but have been away from a computer for a couple of weeks. Included in that time was the Yampa River, Kelley Kalafatich Fundraising Trip, sponsored by OARS, which was an overwhelming success! The trip had it’s challenges, with the highest water seen since 1983 (the river peaked at around 25,000 cfs on the 3rd day) and unseasonably cold and wet weather. But frankly this just added to the overall experience in its own way. If you have never been, the Yampa is an absolutely stunning river canyon, second only to the Grand Canyon in my estimation for visual beauty, and different then the Grand in terms of its beautiful 100-year floodplain terraces where the river camps are located.

The trip included 22 women who paid to go on the trip, Julie Munger, Abigail Polsby, Don Ahlerd, and Marty Schlein, who worked the trip for free, and last but not least Natalie, Debs, and Steve, the Hatch/Oars guides working the trip. The energy on this trip was very special. Two thirds of the women on this trip are personal friends of mine who also know Kelley, the remaining third were friends of theirs. I know Kelley does not really grasp the influence she has on people, even people she has only met briefly or have only heard about her. Some of the women on this trip had never been on a river before, and what a place for their‘first”, Needless to say I think they are hooked. Anyway we held Kelley in our hearts throughout the trip, and I reflected on how many people Kelley has helped in her professional life to enjoy the unique experience of a trip down a beautiful remote river canyon. And how life changing that can be, especially with a group of people like we had on this trip, that bring such great energy to the experience. I was struck by how enthusiastic and down right fun this group of women was, and it was a joy to watch how powerful this experience was for many of them.

George will be donating all the profit from this trip (all of us paid the full commercial price) to Kelleys NTAF account, which should give her what she needs to purchase a suitable car to fit her needs. And everyone is already asking me if we can make it an annual event. I think we will continue to use this avenue to help generate financial support for Kelley, with willing outfitters in the river community.

Kelley has been experiencing ups and downs during the past few weeks, and most recently seems to have had some kind of relapse in terms of her pain management. It evidently have been very intense the last several days, and she is making appointments with various doctors to try and figure out what is going on and what can be done about it. Last week she was feeling good enough that we had hoped she could go with me to Santa Cruz this weekend for a fundraising event for her occurring there this Saturday, and a little sea kayaking. But this current situation has come up pretty fast. I hope the next blog I post can offer more information about what is happening, and a positive course of action. I can’t tell you how much strength Kelley shows in dealing with this pain issue, but it inevitably takes its toll and exhausts her mentally and physically. Please keep Kelley in your prayers, Sue

Update, May 15 - Progress, slow but steady....

2008-05-14T21:37:00.000-07:00

Wanted to pass on a message sent on Kelleys yahoo support group from
oneof the support group members recently. I also got a similar report
today from Sue C. and Hilde who helped out with Kelleys PT on Tuesday.
Everyone who has helped with her PT is very impressed with her progress
and how hard she is working. The PT therapist told Sue C. that Kelley has
progressed from a 0 to a 1 , on a 5 point scale in terms of her
motor function in her lower body. Just 4 more steps to go. Please
include in your prayers for Kelley, gratitude for Kelleys support group
that are helping her on this journey.

" HI everyone,
Just wanted to let you know how Kelley did at PT last Friday. Kelley
is getting stronger and has better balance. Kel is making some real
good progress. Kelley is working out in the gym and in the pool. In
the pool Kelley is beginning to have some control of her legs. Some of
her muscle groups were really trying to fire (gluts, hams, quads
etc...). The movements are subtle but they are there. The nerve pain
is still taking her breath away at times (@#&$)(#*$)#*)$(*#), but is
does pass.

Please continue to send Kelley your love and healing thoughts. Kelley
is able to surf your energy when she is running low.
Take care. In healing,
Tori"

Back on the Water

2008-05-07T22:48:00.000-07:00

Thought you might enjoy this photo taken this past weekend. Me, Kelley, and the boys got out on both Sunday and Monday this past weekend . This has been a great experience for both of us. Its still hard to see how tough Kelleys mornings and afternoons are, when she has to deal with her tough pain cycles. But this couple of hours in the middle of the day has been a definite high to counteract those lows. Kelley is still not really ready to manage the blog yet, so I will continue to be her voice for alittle while longer. Both her and Kurt are still pretty overwhelmed managing this all, and its not likely to change any time soon. But please do call or email Kelley and reach out to her personally. She definitely wants to interact with folks, the blog is just alittle to broad and impersonal for her. And definitely call for a visit if you are going to be in the area. Kelley is alone a fair bit some days, and evenings as well, when Kurt is at work. So company is often welcome. Just call ahead a time to schedule to make sure you can come by at a good time . Thanks, Sue

On the Water today!

2008-04-27T20:55:00.000-07:00

You will be hearing from Kelley soon, but I wore her out today, so am doing the Blog tonight. We went out in my double sea kayak today in Lake Natoma (with our pups Wilbur and Roscoe of course). We were out for about an hour. After getting through some initial trepidation dealing with the logistics of entry, we were on our way. Kelley got stronger and stronger throughout the hour, and by the time we were heading back we were cruisin! It felt really good to Kelley to be on the water, and I am leaving the boat down so she can start going out regularly. More later, but it was a GREAT DAY! Sue

April 23 Update

2008-04-23T21:35:00.000-07:00

Well just had a good conversation today with Kelley, we had a bit of catching up to do since I had been gone on vacation for a week. Not to much has changed, she still has intense nerve pain (particularly between 3 to about 5 pm), but is staying on top of PT before that kicks in. She is particularly enjoying her pool PT, and says her balance and ability to move her legs in the pool continue to improve by small degrees. She also thinks she may have found a good acupunturist, this is #3 right now. It is frustrating how many not so good acupuncturists and chiropractors there are out there, because when you find a good one you really "get" the magic they can accomplish when they really know their stuff. ....So we got some plans for this weekend, since I haven't seen her for a few weeks. We are going to try to paddle this weekend at lake Natoma, (in some sort of lake kayak), and I am going to show her how to post on this blog so she can start telling her own story....

Many of you know her friend Spencer who is fighting his own battle with cancer right now, and have been following his blog. Kelley has incredible admiration for his unique ability to tell his story through his own difficult challenge. I will continue to help Kelley with her blog,and she will tell her story differently then Spencer, but you can expect to hear from her directly more in the future.

I have also been reading Spencers blog regularly. As sad as it is that these two special people are facing such trials right now, being part of this experience has been incredibly powerful. Spencers wisdom and heart, Kelleys strength and perseverence, and for both, the courage and grace that keeps breaking through as they face there individual challenges has profoundly affected many of us. I know my life and perspective has been forever changed. So with the sadness and fear about what lies ahead, there is also hope and inspiration. The next blog will be from Kelley, so stay tuned.... Sue

April 5, Update

2008-04-05T09:00:00.000-07:00

No big news to report since the last blog. Kelleys condition is about the same, and she is continuing to push herself more to get out and do things despite the nerve pain discomfort and the effects of the drugs. Last weekend we had a fairly lengthy outing at a local park, to check out the vernal pools and let the dogs cavort at the dog park. Its still a tough go though, and the drugs make her very tired sometimes.

We are continuing to schedule fundraising efforts to make sure money does not become an issue. So far things are stable relative to that. Her insurance is awsome, and her NTAF account balance currently adequate to pick up what insurance doesn't cover. However her physical therapy and accupunture insurance limits are likely to run out well before the calendar year is over, and they are critical to keep going.

So thinking ahead, there are a few things coming up. The Yampa trip donated by OARS over Memorial Day weekend is almost full. George (the owner) is going to donate all the profit from the trip to Kelley. A special bonus for that trip is Julie Munger and her partner Abby are going to come, and are working on getting permission from the Park Service to bring riverboards for the customers to use with them as guides/instructors on the trip.

We also are going to show the 3 women, 3 hundred miles DVD at the Louden Nelson Auditorium in Santa Cruz, on Saturday June 7. Will send a reminder as that gets closer. I also have gotten 100 copies of this DVD to sell. See details for that to the left side of the page if you want to purchase, 90% of the proceeds go to kelley from the DVD sales. Thats all for now, Sue

March 21 Update

2008-03-21T22:11:00.000-07:00

Sorry for the long time between updates, but here is the latest. Kelley and Kurt just went through a stressful time because Kurt developed an injury in his shoulder from a hard paddling workout that somehow turned into a serious staff infection. Dealing with that was pretty intense for awhile. Thank goodness for Leona (Kelleys Mom) who took care of both of them until Kurt was through the worst of it, and other friends who brought by food and helped drive them to doctors appts. He is on the mend now, although his shoulder is definitely going to need some rehab. So they will both be doing physical therapy for awhile. Kelley is still dealing with nerve pain and her drugs and because of that it is often hard for her to focus and maintain her energy. But in the past week or so she has really forced herself to push through and stay steady on her physical therapy. She has also gotten a couple of acupuncture treatments. She continues to feel more and more sensation in her lower extremities, and can "feel" touch on her skin in areas that she couldn't feel before. In addition to still being able to move some toes on her left foot, she also was just able to move a toe on the right foot in the last couple of days. So the flow continues... still a trickle but flow none the less... I also had the opportunity to show the "3 women, 3 hundred miles" DVD at the F.O.R. conference last weekend. Had a very enthusiastic audience of about 60 to 70 people, ,sold 11 copies of the DVD, and got a couple of donations, which will go to Kelleys NTAF account. I don't have to tell you how emotional it is to watch this DVD, and how much I look forward to the day when we can once again share adventure in the rivers and oceans again with our friend. Until next time, keep Kelley, Kurt, and Leona in your thoughts and prayers. Sue

February 26 Update

2008-02-27T19:34:00.000-08:00

Had a good conversation with Kelley this past weekend, and she shared some encouraging news. She was able to move a couple of her toes, while concentrating on it. I know it isn't much but we are hopeful it is just the start of a trickle of sand that will continue to gain momentum. This week she is also scheduled to start her first water therapy session, first at the physical therapy clinic, and then later in the week, with a couple of friends at 24 hour fitness. The pain is still her regular unwanted companion, but she does feel it is reducing in intensity. At any rate she is encouraged by these positive events and looking forward to moving to another level in her physical therapy. Sue

February 19th Update

2008-02-19T20:41:00.000-08:00

Not much to report exept the following excerpt from an email I got from Kelley today that I think best describes where she is at right now..

"My pain seems to be getting a little better or at least I can predict when it will come and the bouts are getting less strong and not as long, or I'm getting used them"

She has also had some important doctors visits recently. One with a new primary care physician at Davis who she thinks will be more aggressive about keeping track of all of her medical history and progress, on all different levels, and hopefully managing her future care better. And she also saw an infectious disease specialist who will be agressively pursuing some answers regarding how much schisto may have been involved in all of this. This is more for Kelleys peace of mind, since at this point it will not change the damage that has been done, or affect her recovery from the paralysis and nerve pain. On that front nothing significant to report other then it does appear the pain issues are getting better, and that can only help with the rest of her recovery. Sue

Update, January 30

2008-01-30T18:08:00.000-08:00

Kelley was released from UC Davis on Monday evening. She is back home and taking visitors. Do call and arrange in advance if you can, just to make sure your timing is good.

Thanks for Meditation

2008-01-28T10:22:00.001-08:00

Kelley sends her thanks and appreciation for this afternoon's
meditation. The timing worked out well in the room. There were no
interruptions and it was fairly quiet with the door closed. Kelley
was able to transition into a very peaceful state as she received. It
was very nice to see her so calm.

Kurt

Collective Healing Mediation, 12:00 pm PST Sunday

2008-01-26T14:50:00.000-08:00

Friends,

Below is part of an e-mail message sent by Rowena, a friend of
Kelley's mother, Leona. Rowena suggests a short 'collective thought
session' with positive thought or prayer directed towards Kelley's
healing. I especially like what Rowena writes: "we can meditate on her
regaining her health by focusing on the joy of that healing outcome,
rather than focusing on the trauma that she is currently
experiencing". I think she makes a very important clarification in
how we should direct our energetic thoughts.

Kelley wishes to have the first session tomorrow, Sunday @ 12:00 noon,
PST, for about 5 minutes. Remember to adjust for your individual time
zones. At this time, Kelley herself will be in meditation, receiving
your loving, healing thoughts and prayer.

Please spread the word,

Loving Regards,
Kurt

__________
Rowena writes:
I believe our thoughts are powerful things. Even science has proven this
as fact. Also, the more emotion that is felt with the thought, the more
powerful that thought is. I believe we can create amazing changes in our
lives with the power of our thoughts. I believe that two people meditating
on the same thoughts increases the power of those thoughts not just
double, but tenfold, or even one hundred fold. Imagine how powerful it
would be if a good sized group of people meditated on the same thoughts,
and at the same time!

I believe the things that happen in our lives are a result of our
collective thoughts. There are so many people living in the world today
with so many varied thoughts, which is why I think there is so much
diversity in the events we experience. There is love, hate, trauma,
exhilaration, pain, pleasure, etc. We can each create great changes in our
own lives by the thoughts and emotions we have, but I believe we are also
somewhat at the mercy of the thoughts of others. I believe our thoughts
are all interconnected, but those thoughts that are closer to us can have
more impact.

All that being said, I believe that when we think of Kelley and what she
is going through, it is important to dwell on every positive thing we can.
When obstacles arise, it is good that they are taken care of quickly, and
not dwelled upon.

When it comes to our thoughts, there are always two sides to every
subject.... the subject itself, and the 'lack of' that subject. In
Kelley's situation, with health being the subject, we can meditate on her
regaining her health by focusing on the joy of that healing outcome,
rather than focusing on the trauma that she is currently experiencing.

>From the little exposure I have had to Kelley's friends via reading the
blog, I've gotten the impression that this is a positive, enlightened
group of people, who will understand that I don't mean to invalidate
Kelley's suffering in any way. I know it is very difficult for those who
are extremely close to her, and that when she suffers, her family also
suffers.

So in my own meditation, I will take some extra time to include healthy
positive thoughts for all of you as well. I already have a couple of my
own close contacts waiting for me to give them a time for the group
prayer/meditation. As I have not kept my friends up to date much, this
will be a routine meditation, done out of love for a fellow human being.
__________

Thank you, Rowena.

Update, January 25th

2008-01-25T16:28:00.000-08:00

Kelley is still in hospital, but white cell count is down (which is good). She may be moving into an intermediate physical therapy ward for a little while before coming home. Kelleys pain issues have been so intense she is now getting daily visits from the pain mgt team, and they are aggressively working to get things under control. Kelley is at the point where she would like to receive visitors. It helps relieve the boredom and distract her from the discomfort she feels. So please do try to stop by, she would really enjoy having contact with her friends. You should call her ahead of time to check in and let her know when you plan to come. She is in the Trauma nursing unit currently, room 1113 I think (but you can check in and verify at the hospital. Probably be good to visit between hours of 9 and 6. Thanks, Sue

Update, January 21

2008-01-21T20:35:00.000-08:00

Visited with Kelley a couple of days over the weekend. Things are still pretty rough for her. The nerve and spasticity pain are as bad as its ever been and maybe even a little worse (gets up to an 8 or 9 sometimes). Possibly in response to the additional trauma her body has recieved from her recent surgery, but no explanation is offered by the Docs. She is still in the hospital primarily because of a general infection in her lower abdomen in response to the surgery, and is currently on antibiotics. This is not an entirely unexpected response, and not a great cause of concern to them at this point, but needs to be resolved before she can leave. They also want to try and get her pain management under better control before she is released. I got a little lost when Kelley explained the experimentation they are doing with the meds, but suffice it to say they are trying to get a handle on it. So no scheduled release at this point. She has her good moments when the meds are working, but some really awful times in between. Obviously this is still very draining and exhausting for her. She is recieving regular visits from Kurt, her family, and her core support group, and it is a comfort to her (and for us frankly as well). As hard as it is to witness her suffering, it is also reassuring to see her strength and stamina of spirit that will get her to the other side of this. The blog response has been great, for those of you who have not blogged yet, please feel free to keep adding. It will still be awhile before she can handle other forms of communication to any degree I think, and the blog is something she can visit more then once ....... so keep those healing energy currents and waves flowing to her and her courageous family (Kurt, Kim and Leona)

Sue

Update

2008-01-12T10:34:00.000-08:00

Kelley is still at UC Davis. She is continuing to improve, as far as her recovery from her emergency colon repair surgery, and the complications with skin infection, and strength and energy level. She will still need to stay at Davis for awhile until they are sure her risk of post surgery infection can be be managed at home . The other good piece of news is that her most recent MRI shows that the lesions in her spine (cervical/thoracic) have reduced in size. Still to be seen what continued improvement will be gained in motor function. There is some troubling news, in that a couple of lesions have shown up on her most recent brain scan. More testing and monitoring will need to be done to determine the significance of that.

There is still alot that is not "known' about Kelley's condition, and causes of things that are happening to her, and prognosis for long term recovery. As more certainty is gained about these things, they will be shared on this Blog. She still is unable to recieve visitors, and does not have energy to deal with phone calls or emails. It is likely to be that way for awhile, so again, please post a comment to the previous post if you want to send your thoughts and best wishes at this time. It does help her to recieve your energy in this way, that does not take energy from her.

Sue

Update, January 7

2008-01-07T20:08:00.000-08:00

Kelley is still at UC Davis. She is still very weak, and extremely susceptible to infection and in fact has developed a worsening case of shingles (skin infection). She therefore is still in quarantine, so will not be able to recieve any visitors. She probably is still too weak to deal with phone calls as well, and no doubt has a huge back log of messages on her cell phone.
Her overall condition as far as fatigue and strength after her surgery is improving but she has a ways to go. I'm sorry I have no details to provide as to why these complications are happening. I think it is safe to say that the big picture is that the physical dysfunction that the tranverse myletis has caused has left Kelley very vulnerable to alot of potential complications.

I would like to encourage folks to post a comment to this blog if you want to pass on your thoughts and best wishes to her at this time. I think this would be nice way for kelley to be able to recieve your communications until she is feeling better, and better then clogging her phone and email with messages she just can't cope with right now. Her family could also help with sharing your sentiments with her from this blog as well. It is so frustrating at times like these to feel like there is so little we can do to really help, but I think our prayers and sentiments can actually help in a significant way. So please figure out how to post comments to the blog, and send your positive energy and thoughts her way. Sue

New Medical Situation

2008-01-04T09:52:00.000-08:00

Kurt had to take Kelley to the UC Davis emergency room on December 31st.
She had 'free air' in her abdomen, meaning that there was a rupture
somewhere in her bowel. Kelley went in to exploratory surgery that
evening. She was found to have a perforation in her colon. After
maintaining through a very critical period, she has now stabilized in
her vital signs. She is currently resting and recovering from this
ordeal at Davis, it is currently unknown how long she will need to be there.

Kurt and Kelley's family ask that there be no visiting during this time.
as Kelley's exposure to outside germs needs to be absolutely minimized.
She has no energy to field phone call and will need to rest in
order to recover. Please stay tuned to this Blog to find out when she is
able to recieve phone calls and visits again, and to check on her progress.

Keep her and her healing in your thoughts, Sue

Update, December 27 and Yampa Trip

2007-12-27T22:24:00.000-08:00

Hope folks are still checking in for updates, we will be keeping this updated every week or two. I wish there was more positive news to report on Kelley, but this is going to be a long haul. As I said before there are small improvements in motor function. For instance, while laying on her side on her mat, she can pull her leg from a straight position into a bent position. But unfortunately her nerve and spasticity pain continue to be relentless. It is still extremely difficult for her to do the simplest things like answer email, write cards, or read books, ...because this is so pervasive.

She did have a good session with a physical therapist friend, who now practices Cranial/Sacral/Energy work, and hopefully she can start getting more of this kind of treatment, and maybe some specific type of acupuncture to help will pain soon. But the holidays are a tough time to get things to happen, unfortunately. Our friend Kelley, is one tough cookie. Hopefully more positive news to report next time.

One last thing, a fundraising raft trip on the Yampa River has been offered by the owner of O.A.R.S. This will be a 5 day trip, launching on May 22nd, at a cost of around $850 per person. All profits will go to Kelleys account with the NTAF. Please reply to this blog if you are interested in finding out more about this trip, and/or reserving a spot on what will undoubtably be an unforgettable experience.

Sue

News from Coloma Event

2007-12-10T18:05:00.000-08:00

Well the Coloma fundraiser was a huge success with about 225 people attending, about 100 donated auction items, and raising approximately $20,000 for Kelley. Huge thanks to Janice, Howard, Teal, Sarah, Robin, Bill and the rest of the Coloma Valley residents who organized this event in less then 4 weeks, and kept things running smoothly throughout the entire evening. The power of community, ….awesome.

The big winner and giver of the evening was Jeff S, who acquired a stunning watercolor of women outrigger paddlers in Hawaii, donated by Ronaldo Macedo of Maui. This auction item was coveted by several in the crowd, and the bidding reflected the passion this piece of artwork inspired, I think in large part because of how much it evokes the spirit of Kelley. The final bid topped out at $3,700.

We visited with Kelley today and shared some stories with her about this event she so much wanted to be a part of. She wants everyone to know how much she appreciates the collective effort and generosity displayed by the community that contributed to this event. I think it’s getting a little easier for her to receive, but the success of this event was bound to be overwhelming for her.

To me, Kelley’s daily life still requires a monumental effort. She is of course being very proactive in her recovery and learning to cope with her disability and medications. But it comes with a price, which manifests as nerve pain that cycles around on a continual basis. The exercises and therapy she needs to do to make this get eventually better, makes the nerve pain worse for now. She has experienced some ability to get muscles in her leg to fire and move. Although these movements are currently minor, they are still very encouraging and she is determined to work as hard as it takes to keep it coming back. Her strength and determination continues to inspire.

I believe planned visits are very good for her and are welcome during this time when her pain is not so intense she can’t interact, but present enough for conversation and visiting to be a welcome distraction. Visits should be planned with her in advance, and may be cancelled on short notice if conditions (pain/fatigue) change for her. I have noticed that Kelley still wants to be a considerate hostess, sometimes at the expense of her own well being, so folks need to be especially sensitive to subtle clues. Weekdays are probably the best time, especially while Kurt is at work, and evenings are generally not a good time.

Next few weeks will bring several follow-up tests and examinations to monitor her condition and progress. We will keep you posted on this, as well as on future fund raising events planned for late january down in bay area.

Sue

Fundraising Campaign Officially Begins

2007-12-04T21:38:00.000-08:00

Friends and family have chosen to fundraise for Kelley with the NTAF Catastrophic Injury Fund. The NTAF is a charitable organization that provides both tax-deductibility and fiscal accountability to her contributors. Funds contributed will be used only to pay or reimburse her medically related expenses that are not covered by insurance including insurance premiums and co-pays, and alternative therapies. To make a charitable contribution to Kelley's fundraising campaign:

Make Checks Payable to:
NTAF Southwest Catastrophic Injury Fund

Note in memo section: In Honor of Kelley Kalafatich

Send to: NTAF
150 Radnor Chester Road, Suite F-120
Radnor, PA 19087

We would prefer you make your donation by check, because these are only charged a 4% processing fee, however
to make a credit card contribution (with a 7% processing fee) you can call NTAF at 800-642-8399 or visit www.catastrophicfund.org. If you want an acknowledgement of your contribution please request a tribute gift form by email to rivgu@aol.com. We have also prepared some fundraising flyers that we will be sending out through an email campaign. If you would like an electronic version of our flyer to send to other friends that we did not contact, again email this request to rivgu@aol.com. We will be providing future information on this blog regarding our fundraising goals, and progress on reaching those goals.

Thank you for your support, and providing the foundation for Kelley's recovery,
Kelley's Core Support Group

CONTRIBUTIONS ARE TAX-DEDUCTIBLE TO THE EXTENT ALLOWED BY LAW. THIS CAMPAIGN IS ADMINISTERED
BY THE NATIONAL TRANSPLANT ASSISTANCE FUND, A 501(C)(3) NONPROFIT PROVIDING FUNDRAISING
ASSISTANCE TO TRANSPLANT AND CATASTROPHIC INJURY PATIENTS. INFORMATION: 800-642-8399.

Kelley is Home

2007-12-04T11:37:00.000-08:00

Hi all,

Kelley is home. We are currently in this mode of figuring everything

out. Thanks to you, we have a new home, new beds, new everything.

There is a learning curve. Kelley has to get into a pretty

disciplined routine for herself, all in these new surroundings. I

want to ask that we help support that the rest of this week. She

needs plenty of quiet time to think and to get organized so that her

new routine is not stressful. She knows what she needs to do.

thx,

Kurt

PLEASE RSVP FOR COLOMA FUNDRAISER

2007-12-03T10:41:00.000-08:00

Thank you friends for all your help and ideas for the fundraiser. Last thing we need to do is RSVP, just so we know what we are working with. Also, bring your favorite photo of you and KK, we are going to put them all in a journal for her along with your words of inspiration and love. (paper provided at event). Please RSVP to redbudjanice@mac.com. Blessings, Janice

Kelley's spirits high/ Monday Dec 3 new Release date

2007-11-30T08:14:00.000-08:00

I spent the day with KK yesterday and they have started the drugs for Shisto. They were worried about side effects, but KK is doing great; no side effects so far except extra superwoman strength from the steroids. She is doing great in physical therapy and should be released on Monday! Hope to see all of you next Sunday on the 9th in Coloma. Thanks for the support! Julie

Diagnosis Update!

2007-11-28T11:30:00.000-08:00

Some big news folks, I have just pasted in the message Kurt sent to our core group yesterday, cause it says it all... read on....

Yesterday, Kelley's blood results came back. The absolute very last test of very many, all negative so far. She was the one who asked for this final test. The result showed positive for Schistosomiasis antibodies. Schistosomiasis is a water transmitted parasite that isprevalent in Africa and S. America, but virtually unknown in the USA.Please Google "Spinal Schistosomiosis" to understand more about this. Everything fits her symptoms and findings. It also explains some non-typical TM results in her MRI scans. Furthermore, the Schisto parasite could also be (is probably) linked to her liver cyst and maybe even the fibrous tumors found in her reproductive system. I'll repeat a'maybe' on that last one, but there are documented cases.This is pretty bizarre, and some of the doctors at UCD are excited about it. They plan to make a special case study of Kelley. I think that this will help her get more proactive medical attention from them. Happy about that. Kelley and I feel some relief that the cause has been found and that additional proof points away from other diseases such as Lupus or MS. Today was Kelley's discharge date. It has been postponed for almost another week. She will be treated with a drug called Praziquantel and also more steroids, all orally. This treatment should kill the parasites if they still exist in her body. The treatment can cause additional swelling in her spinal canal, and thus the steroids. It is a critical enough treatment to require further monitoring at the facility. Please help make this another quiet week for her. Thanks for everyone's support! Kelley has an awesome attitude, and I know that our support helps to fuel that fire. Kurt (p.s. Kelley had been telling all of us and the doctors from day one that she was concerned that this might be related to what was happening to her. She knew she was exposed to this parasite when she did the Blue Nile expedition 3 yrs ago. Thank goodness she showed the tenacity we are all familiar with, and insisted they do this test! Even though previous doctors she had talked to about this, had dismissed her theory. Sue)

Fundraiser Event set for December 9th

2007-11-26T20:31:00.000-08:00

All friends and community members are invited to attend a fundraiser for Kelley Kalafatich on December 9th beginning at 5:00pm, hosted by Howard Penn and the Sierra Nevada House in Coloma. Dinner, drinks, dessert, and a showing of Kelley's film "Three Women, Three Hundred Miles" will be featured. A $25 per person minimum donation for the dinner is being collected for Kelley's medical bills, as will funds raised from the silent auction and raffle. Event organizers can feeed only the first 140 diners, please RSVP to help us estimate numbers. Many volunteers, sponsors and donations are still needed. Please contact Janice Stanley, Fundraiser Event Chair, at redbudjanice@mac.com to RSVP or help.

Sleep/Fundraiser/Photos?

2007-11-21T17:13:00.000-08:00

Thanks to all the support, Kelley has a place to live, a non-profit fundraising trust being set up, is finally getting a little sleep and actually has an 8 hour leave from the hospital tomorrow to check our her new digs!!! At this point, hopefully she will be able to go home next week sometime!
Janice, Howard, Teal and others in Coloma are setting up a fundraiser at the Sierra Nevada House in Coloma for Sunday, December 9th. There are donations coming in already for an auction! Howard is generously donating the restaurant for the festivities. Please contact Janice if you can help or donate, and of course; please come! I will post more details as they are known!
Janice's e-mail is redbudjanice@yahoo.com!
Please have a happy thanksgiving and be thankful for all that we have; including KK, in our lives!
Thanks and love to you all!

Julie

PS! Did you see what the cleaning crew did to the house? Amazing! Thanks construction and cleaning crew!

Kelley's Friends Rock

2007-11-19T09:01:00.000-08:00

Leave it to Kelley to have a group of friends happy to take a Sunday to clean a musty and dusty house !!! Patti Boyer, Sandy, Darin O and Cheryl V armed with their favorite cleaning supplies, evicted the spiders, shook up all the dust and washed the place from head to toe. The supervisors, Jody and Carol, approved of our work and gave us the okay to go... Lance and Jim started early on the ramp and made plans for the bathroom renovations. It was fun and heartwarming to go through the house and listen to people telling how they knew Kelley and adding some fun story about her and her kindness. I loved the story about how Carol found Wilbur at the nurses station while Kelley was taking a test !!! The house is a god send, it is a Tahoe-type cottage in the woods surrounded by the city. There are 2 on site gardeners in goats clothing and plenty of room for Wilbur to roam. Very peaceful. Thanks again to the cleaning crew You Rock !!! Mary Ellen

Furnishing the new digs

2007-11-17T16:24:00.000-08:00

Am helping coordinate furnishing the new house, so that K and K have enough but not too much at their new digs, knowing this all has to be moved to somewhere else in 6 months. The following is what I think would work, what we currently have covered and what we still need. The furniture should be lightweight (like swedish,ikea design) so it is not to bulky or heavy. Please let me know if anyone has anything to donate in the still need list, even if it is a 6 month loaner (which you will transport there and back home). They do not want you to go out and buy new stuff for them, so just looking for things your planning to replace with upgrades at your home. I am planning on checking out some second hand furniture stores tomorrow as well to see what might be available close by. Would like to get them mostly outfitted by the end of thanksgiving weekend, in preparation for Kelleys projected discharge date of the 27th. Call or email if you have one of the things on the list and it is available by that weekend or earlier. Thanks, Sue

Still need:

Comfy, not to ugly couch
Dining room table for 4 to 6 people
4 dining room chairs
front loading washer/dryer
pillows both bed and couch
light weight outdoor patio table with 4 chairs
bedroom table lamps
one standing living room lamp
end tables?
Small lightweight book case
Small computor work station

What we think we have:

From Dawn:
Chaise lounge
Lightweight end tables (number?)
Queen bed
Thin rug for living room

From Lisa and Sue
Coffee table
Queen bed
Space foam topper mattress
End table

KELLEY"S BIRTHDAY NOVEMBER 20th

2007-11-16T12:08:00.000-08:00

Just thought I would let everyone know. Her address is: c/o Kurt PO Box 322 Fair Oaks, CA 95628
e-mail is kalafatich@hotmail.com

CLEANING PARTY/KELLEY POPPING WHEELIES

2007-11-16T10:30:00.000-08:00

Hi Everyone!
Rumor has it that KK is already doing wheelies and jumping curbs in a wheelchair. Hopefully, she will master the art of wheel chair acrobatics in just enough time to walk out of it! Her estimated release date (hospitals are like prisons as far as I am concerned) is November 27th. The docs are still working to figure out the best non-narcotic pain meds as nerve sensations are still causing KK quite a bit of discomfort. KK is working on visualization techniques, meditation and other non-western types of pain management. She still needs quite a bit of rest and the Physical Therapy wears her out. We appreciate everyone's sensitivity to KK's need to rest and those of us who are "first string" caregivers also need to remember that this means "us" too.
I have organized a cleaning party for KK and Kurt's new house on Sunday at 9 am. If you can help out and haven't already contacted me; send me an e-mail and I will forward you the directions and other information. My e-mail is julie@sierrarescue.com. I really appreciate the response!
Love to you all!

Julie

CLEANING HELP NEEDED THIS WEEKEND

2007-11-13T19:38:00.000-08:00

Hello Friends!
Kelley and Kurt have a house to move in to. Lance will be doing some alterations this weekend and there is help needed to clean up the house! I am trying to put together a list of people available to help out. Sounds like Sunday will be the best day. I am not sure that I will be able to make it; but I will be sure this all gets organized. If you can help, please send Sue and I an e-mail so that we can coordinate it at julie@sierrarescue.com and rivgu@aol.com.
Thanks to friends things are coming together to get Kelley out of the hospital as soon as they will let her.
Thanks again to everyone!

Julie

Housing Taken Care Of

2007-11-12T21:15:00.000-08:00

Well I am happy to say nobody has to call me with housing leads, because a great option on housing has just been secured for the next 6 months in Fair Oaks through a friend in the Hui O Hawaii outrigger club. From what I saw today with her ability to huck herself around from bed to wheelchair and back, I still believe it will not be long before she will be able to go home, although they haven't said anything specific yet. Kelley continued to get good rest throughout the weekend. The pain Kelley is experiencing is a nerve pain specific to this condition, and is likely to go on in some form or another for months. It feels prickly, stingy, burny, she describes it like the feeling of skin coming out of frostbite, and seems to show up different places at different times. Rest seems to be really key in helping manage how aggravating this nerve discomfort gets, which is why we are being such Nazi's about the visiting. What Kelley is going through right now is exhausting on so many levels, and even simple conversations can be really taxing when they occur at the wrong time or too often. But we let her know about all the communications of support that has been sent and I don't think I can express how much it means to her. Lets hope for a good week, after a restful weekend they start back on the aggressive PT tomorrow to get her ready for outpatient life. Sue

NOV 12 am/THANK YOU/HOUSING/REHAB

2007-11-12T08:10:00.000-08:00

Hello Friends!
THANKS SO MUCH FOR CHECKING IN ON KK and for the e-mail response! It is truly incredible. I am forwarding your e-mails to Kelley and when she feels better; she will start to catch up. The goal now is to get her through REHAB and out of the hospital.
She is working hard in rehab, getting a little sore and resting! THANKS SO MUCH FOR GIVING KELLEY HER SPACE TO REST and ADJUST! I will post something as soon as she is ready for visitors. Right now she is appreciating the time to rest and recover; but loves and misses all of you! She looks forward to seeing those of you who will be able to visit in the coming months and e-mailing those of you far away.
Right now the big push is to find a house for Kelley and Kurt in Fair Oaks or Folsom. If any of you have any leads or reliable housing suggestions; please call Sue Norman at (530)400-9888. We are hoping to find them their own place with one or two bedrooms that is wheel chair accessible or convertable. Thanks for any ideas!
There is reallly no way to know what the future will hold for Kelley's recovery. It will be a day to day adventure for her and as you know; Kelley will be putting all her energy into healing!
We are still exploring the best Trust/Non-profit fund raising/account options and will let you know as soon as somthing is final.
Thanks for all your love and support and the e-mails!

Julie

11/09 NO VISITORS UNTIL WED NOV 14th! AFTER NOV 14th VISITORS ONLY 4-6 pm

2007-11-09T22:19:00.000-08:00

Hello Everyone!
Kelley will be in intense physical therapy for the next few days! The nurses will only allow family during her physical therapy hours. Kelley will be tired. PLEASE RESPECT KELLEY AND HER NEED FOR PRIVACY AND REST!
THANK YOU! Thanks again for all the love coming Kelley's way! She feels it!

Julie

FRIDAY NIGHT NOV 9/NEW ROOM 515/KK TIRED!!!!PLEASE, PLEASE DO NOT VISIT!

2007-11-09T21:33:00.000-08:00

Hello everyone!
I will keep this short! I am in KK's new room. They have moved her to rehab in room 515! She is doing much better, but she is TIRED! I don't know how to emphasize in a supportive nice way that KELLEY NEEDS SLEEP; NOT VISITORS! There is a constant stream of visitors; all very much appreciated; but with rehab and tests and moving rooms there is no time for KK to sleep and just have some peace. We all love her and want to see her and support her. There will be plenty of time for that!
They are doing another CAT SCAN tonight to check a spot on her liver and make sure it is not a parasite that she brought back from Africa. This is unrelated to the transverse myelitis.
KK's attitude is as you would expect; AWESOME! She just needs a little space to get used to some adjustments and catch up on some sleep.
Thanks for your understanding and ALL YOUR LOVE!!!

Julie

Update, Friday 11/9

2007-11-09T16:15:00.000-08:00

Kelley has been taken off all the IV pain meds, and is finishing up a five day course of steroids. The doctors have completed most of their testing into causes etc, and through the process of elimination still feel that the diagnosis is tranverse myelitis. The word from Kurt is that from Saturday onward into next week will be a very critical transition for Kelley. There really is no more treatment the doctors can give her for her condition. Her body (and mind) will need to take over and continue to heal. He asks that we all help now more than ever to keep things quiet, visits short, and Kell's rest periods long. Assuming the pain does not come back at the end of the steroid treatment, she will be starting an aggressive PT and training program to give her the skills she needs to manage her disabilities and leave the hospital. No estimate on when that might happen yet, but I think by the end of next week, we should have a much better idea. Somehow I think Kelley is going to pick this up fast (alot of the same skills used when rigging to flip I think). A couple of us are looking into a mechanism for tax deductable donations to help pay for Kelleys needs related to this illness, and I think we may have found something that would really work well. Hopefully can provide more concrete information on that soon as well. For those of you who may want to visit this weekend, I would call the night time watch the following morning to get a last minute assessment on what kind of night Kelley had to determine whether it would be a good day. The schedule for this weekend is Julie Munger (Friday night), Kurt (Saturday night), or myself Sue Norman (Sunday night). If you don't have our phone numbers just call the hospital and get dialed into the room. From past experience I would not plan to visit without checking in first. Thanks all, Sue

Update, Tuesday 11/6

2007-11-06T20:24:00.000-08:00

No real new news to report. The inflammation in Kelleys spinal cord is still running its course, so the treatment is still limited to monitoring the progress of that, managing her pain, and running different tests to rule out different causal agents. Kelley keeps having a mix of good periods, and difficult periods with the pain management so it has been hard on her. They keep mixing up the drugs they give her when one stops working or causes to much nausea. She is hanging tough, but of course we would all expect that. The PTs and nurses are amazed at how agile she is and easy to move around, but of course she is doing most of the work herself. Keep your prayers and positive thoughts flowing, Sue

KK has a NEW BIGGER ROOM! 5139-02

2007-11-04T19:32:00.000-08:00

Hello KK supporters!
Great news tonight! KK is doing great! Her attitude is awesome. She is not in pain and looking good! They have moved her to a new and bigger room that was originally for three people and now is only for two. At this time; she has it all to herself!!! She is enjoying it while she can and it is luxurious for a room.

HER NEW ROOM is 5139-02( the 02 is for bed 2) and her number is (916)703-8540!

It looks like KK may be up for visitors this week!!! Keep checking the blog!

Thank you all!!!

Julie