Monday, November 30, 2009

Holiday Season Reflections

My younger daughter, Cynthia, was home for a recent visit and after I showed her my much improved grip strength (I actually squeezed her hand as hard as I could and made her yell for me to stop) after which she made the comment "Dad, do you realize all that has happened to you during the last year?" After I thought about it for only a few seconds, I realized how truly correct that comment was.
Now, please don't interpret this as an 'I'm cured' statement (because I'm by no means close to that), however, reflecting on what has taken place during my journey with MS in the previous year, some pretty amazing things have been happening.
It all began late last fall when I fell and broke my hip, which at the time I thought was a terribly unfortunate incident, but now I realize that it marked a new beginning, however, I don't think anyone with MS should try to replicate this. After the Segway helped me immensely, both in the hospital and during the recovery period at home (the Segway made it much easier to get through the initial phase of this important period), I began the arduous task of going through physical therapy. I had to work very hard, but in the end it has paid off in huge dividends.
During the therapy, both my therapist, Ellen Sutton and I, both saw the interview conducted by Meredith Viera on the Today Show with a young woman who had MS and was using a truly amazing device which helped her to walk again (on You-tube you may see both the interview as well as how others with MS are using the L-300). Because of my interest in the device, (Bioness L-300) my physical therapy was extended to the Northern Kentucky Rehabilitation Hospital in Edgewood, Ky. There I tried the device out and was immediately hooked on what it might be able to do for me. I acquired the Bioness L-300 and began to use it on a regular basis. It worked remarkably well and has enabled me to go on a couple of out-of-state trips. Now I wear it full time.
After being trained in how to correctly use the L-300 for a couple of months, I began occupational therapy at Cardinal Hill Hospital in Lexington for the purpose of trying and using the Bioness H-200, which is designed to be used on the arm. I wear it during the therapy sessions. Prior to using it, My right arm hung limply by my side. Muscles were wasting away, my right hand was most often in a curled position because of the ever present spasticity which was very evident, and the muscles were quickly in the process of becoming totally atrophied. It was truly amazing for me to see my fingers on my right hand extend out as soon as the electrical impulse administered by the H-200 caused the muscles on my right arm/hand to contract. While wearing the H-200, I practiced manipulating small devices, stacking blocks, and moving small pegs from one pegboard to another. It seemed magical indeed. I can now actually move a few fingers and the thumb, albeit slow and not without effort on my part, but I haven't seen this in several years. I thought that I would never see this type of movement again. I was even losing any grip I had at all which was causing me some problems holding onto the handlebar of the Segway with my right hand. Although full use of the almost dead hand and arm is not expected (at least that's what they (therapists) say, but I never said that I agreed), any movement at all in them is awesome for me to experience. In fact, when being evaluated during my initial visit to Cardinal Hill my grip measured in at a whopping 5 pounds. After just a couple of weeks it was remeasured with a grip meter at an unbelievable 40 pounds (a normal persons grip would measure in somewhere around 60 pounds). That's why I can now cause my daughters to yelp and urgently ask me to stop when I squeeze their hands. Freakin' awesome to me. The H-200 seemed like it had not only awakened sleeping muscles but was actually beginning to build them up. At this time we decided not to purchase the device, but instead are using the STEM unit (electrical stimulation unit) which was provided to me during my initial physical therapy visits in order to recover from the hip replacement surgery. After I get everything working well again on my computer (it crashed, probably from a virus of some type) I plan on posting a short video entry showing it at work and the effect it is having on me.
Again, I DO NOT IN ANY WAY, SHAPE OR FORM insinuate that these devices will work for others as well as they do for me, and I don't want to allay the impression that my path has been easy. After all, anyone with MS recognizes what an individualistic disease it is, but instead my goal is simply to tell others what it has done for me (so far - time will tell).
So as you can see, I have a lot to be extremely thankful for this season.
I get several questions asked of me, one of the most interesting ones came from another church member when he asked me as we were getting ready to board a bus for yet another trip. "Are you trying to wean yourself away from the Segway?" My response being "Definitely not, I still use it in places where I may be required to do a lot of walking (such as larger stores and visits to the mall), but now it has become a choice rather than a necessity". I definitely have no plans to give it up, but instead get much comfort from just knowing that it's there and available whenever I need it.
I apologize for the length of this entry, but to me I feel that it's important to share this part of my story with others.
Just remember what Winston Churchill meant when he uttered the comment, "Never, never, never give up".