Sunday, December 13, 2009

Clinic Visit -- AFOs, nutrition, wheelchair, etc

So I went back to the clinic at Cornell, and this time I met the Physical Therapist for the first time who told me that the brace [AFO] I am wearing is really for foot drop, not for the ankle pronation I have.  So she said that I should only wear the AFOs when I have to stand, and not throughout the day.  She also said I am on way too much medication, most of which isn't even working anymore, and is managing to zap my energy and zonk me out during the day.  She and Drs. Lange and Wu are referring me to a spasticity specialist [they used the word "guru"] at the Hospital for Special Surgery to explore alternative methods such as botox injections, and they are really pushing the idea of a baclofen "pump", which I would use to put the anti-spasticity drug directly into my foot when I need it, rather than through my bloodstream to be wasted on the way down, and cause side effects like drowsiness.  So I will see about all this

They are finally coming to take my wheelchair this week to upgrade and adjust it, including power footrests that I can use to elevate my feet.  I have known that I have not been sitting comfortably in that chair for years, and it is nice to have someone finally listen to me, in fact mention it at first sight of me, because I had given up trying to convince any professional that all was not right.

As for nutrition, the jury is still out until I go to my primary care physician and get my cholesterol and blood sugar numbers again.  But the dietician agrees that if I am going to put 4-5 cans of enteral feed down my tube, I need the lowest calorie nutrition possible. 

My mantra has been not only "when one door closes, another door opens", but also the second part of that, which is "sometimes we stare at the closed door so long, that we fail to see the door[s] that have opened for us".  I have wasted so much time in my life trying to salvage relationships that cannot work, that I could have spent on new projects, jobs, or people. 
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