Saturday, December 31, 2011

Happy New Year













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

Monday, November 7, 2011

Settled In!

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).

Wednesday, October 19, 2011

Leaving MT

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, kelle
y

Monday, October 10, 2011

Project Walk's Grand Opening and Steps to Recovery

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

Wednesday, September 28, 2011

Fall is here in Montana

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!!

Saturday, August 27, 2011

Video of Kelley Exercising

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

Ro

Friday, August 26, 2011


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!

Ro

Thursday, July 14, 2011

Missing everyone

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.




Sunday, May 22, 2011

Road Trip!

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

Saturday, March 26, 2011

And On a Friendly Note!!

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

Friday, March 25, 2011

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

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

Monday, March 7, 2011

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

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.


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 always wondered if they had Schistosomiasis?


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


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



Wednesday, January 5, 2011

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

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