Episode IV - A New Hope

Well, hi there.

I think we all know each other, so I'll dispense with the formalities.

You, as one of the "chosen few", will be able to follow my big adventure - a junket to the Mayo Clinic in Rochester, MN. The purpose of the trip is to explore the possibility that something can be done to repair or effectively treat my ET (that's short for Benign Familial Essential Gross Motor Tremor), a condition that's a progressive but non-fatal cousin to Parkinson's disease.

Those of you close to me know that what was once merely an annoyance has progressed to the point of fairly serious debilitation and has become a source of frustration for me. Logically and emotionally extended, it's also become a source of frustration for those of you close to me. I want it to go away. YOU want it to go away. It occupies WAY too much of my time and thought.

The physical reality is that I have a difficult time performing tasks that should be taken for granted. I was blessed at birth with a fair amount of athleticism and grace, but my movements nowadays can best be described as herky-jerky. It has become difficult and embarrasing to eat in public, and some dishes are well nigh impossible (I'd have soup on the ceiling!). I must drink with two hands. I can no longer play my treasured musical instruments (which I once did professionally). I can no longer build nor fly my R/C airplanes or put a model railroad locomotive on the track. I cannot write. I cannot tee up a golf ball (and my putting has become quite the show - talk about the "yips"...). I have difficulty applying toothpaste to a brush (once that's accomplished, however, I don't need an electric toothbrush!). The list goes on.

And don't get me started on the occasional insensitive boob who asks, "What're YOU so nervous about?" Ha. Yeah, good one.

All of this may sound like a bunch of whiny complaints. Perhaps they are, but I'd like to think that I can regain these small skills. I'd give my right arm to be able to use my right hand.

I've seen multiple local neurologists seeking treatment for the condition. Each has basically trotted out the same "cookbook medicine" handful of pharmaceuticals well documented in the literature as treatment for ET. I needn't bore you with these. Suffice it to say that their effect has been at best marginal, and these doctors eventually threw up their hands. I finally visited with a certain neurologist, Dr. Ahmed Robbie, who realizes the seat of all medical knowledge is NOT Joplin, Missouri. After the usual drug suspects again produced poor results, he told me that I needed "world-class" treatment, and offerred referrals to Johns Hopkins, Barnes, UCLA, or Mayo. I chose Mayo because of relative proximity, reputation, and personal experience.

I'm hopeful; I think that this is my best chance to markedly improve the quality of my life, so I intend to chronicle this trip. And you, dear reader and friend or relation, are invited along for the ride.

Thanks for your interest,
Tom