My first Blog posting

Well, this is my first attempt at blogging, so here goes. In this first posting I will try and describe my greatest frustration with ALS.... Not having the energy to do everything I want to do in my life. Everyone that is healthy never thinks about how much energy a task will take. Why, even typing this blog takes energy from me that will catch up with me at the end of the night. And it varies day to day. This day 5/14/2010 is shaping up to be a bad day because I had to take a pain pill. Only one so far.

I would like to clear up a myth. Most websites state that ALS Pt's feel no pain. That is simply not true. I get a low level 1-2 general ach in my hands & limbs. If I stretch my arms past where the spascisity allows me to comfortably do so, my pain jumps to a five! It is theorized that this low level pain is due to specific irritations of the motor nerves that are being irritated already from the ALS

Back to the fatigue issue: I would like every one to stop and think about this. Let's say you were at Disney World's Magic Kingdom and you had to walk from the front entrance to the Merry-go-round in fantasy land; I could not do it. I would have to use my powered wheelchair that the ALS Jacksonville Loan closet lent me. Try and conceptualize that for a moment. If I tried, I might get half up mainstreet and then have to set down for about a half hour to "recharge". By about mid-day, I would be wiped out and have to go back to my hotel room to re-charge for 2-3 hours , by sleeping and taking a muscle relaxer, because the more I move about; the more I get jammed up or get stiffer. Who would want to go to Disney World with me except those people that really love me and understand and that would help me. More to follow in the coming days. Love to all, Gene