October 11

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

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....

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

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

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