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

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

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

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

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

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