Sep 082010

From time to time, I will talk about the early stages of my illness and describe some of the tools that I found useful.

The photo above was taken about two years after I had been diagnosed. During those early years, I had still not adjusted to my weakened quadriceps muscles. From what I have read on support group forums, I was not alone. You will find yourself walking along perfectly fine, but then the slightest irregularity in the pavement, even the most minor stub of a toe, and you will wind up sprawled on the pavement, bloody and bruised. Although your legs can still support your weight, there is no reserve strength to catch your balance. It is shocking when it happens, both to the one who falls and to those who see it. I was fortunate enough to be referred to a physiatrist who recommended that I get full leg braces. She sent me to an orthotist, Larry Johnson, in the San Diego area, who knew how to make braces out of lightweight carbon fiber materials and equip them with hinges that locked and unlocked automatically with each stride. Those “space-age” braces gave me several more years on my feet. I never would’ve been able to walk more than a few steps in conventional heavy locking braces. However for those who are thinking about braces, please be sure to include a good pair of forearm crutches, as braces may increase your stability, but they actually make you more vulnerable for dangerous falls. Believe it or not, during my last year of trying to continue working, this is the way I would look as I came into a client’s office. At 6’4″, I must have been an intimidating figure.

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