Good friend of mine has been having increasing difficulty with motor function over the past few years. Primarily one side of his body, arm/hand and leg/foot affected and a heightened startle reflex. It’s been heartbreaking watching the slow decline and he’s trying to manage it as best he can while working full time and staying active as a triathlete. He got through the swim and bike in his last race but there was no way he could negotiate the run. Lots of testing over the last few years with no definitive answers. Finally, he got a tentative diagnosis of primary lateral sclerosis. Seems like a fairly rare condition and not much in the way of information I can find via Google search. Anyone aware of cutting edge research or off the beaten path resources I can direct him to?
There are lots of us PLSers - well, maybe not lots. It is believed ~2,000. visit our website at www.sp-foundation.org
I personally was dx’d w/PLS in 1993. I am VP of the Spastic Paraplegia Foundation; I’ll watch for your request and I’ll include “you” in our database. SPF has awarded several grants for PLS.