June 28 Update

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

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

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!

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

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