On Wednesday, August 19, I saw Dr.Tucker for a lyme check up. It's been 2-1/2 months since my last appointment. He's been monitoring my lymes with an Electrodermal Test (EDT). He gladly reported that the EDT didn't detect any trace of the Borrelia Burgdorferi spirochete; my lymes disease is in remission. I will go back in 6 weeks for a follow up. I will also send a blood sample to Dr.Matman, who first found the spirochetes in my system in February. Unfortunately, this won't happen till October 1, because her lab has been shut down, again.
So, where does this put me? I felt that finding out the unknown cause of my ALS symptoms and eliminating it as Phase 1. This took 2 years, 4 months, 7 days. At first, I thought the end of the lymes disease would ensure a reversal of all my symptoms. I quickly realized that the elimination of the spirochetes would only stop the progression, not reverse the 2+ years of nerve damage and muscle atrophy. This brings me to Phase 2: Nerve regeneration. This is a relatively new and expanding medical area. I am looking into drug trials that offer this leading edge technology. Somehow, I feel that even without drugs, my body can heal itself, just as it does with cuts, scrapes and bruises. Hopefully, Phase 2 doesn't take as long as Phase 1. The last part is Phase 3: Rehabilitation. Lots of physical, occupational and speech therapy so I can walk, talk, type, eat, etc.ALL BY MYSELF! So, that's my plan, and all completed by the year 2000.
Thanks to everybody for all the prayers and support. A special Thanks to my wife, Cali, for hanging in there. I know it ain't easy. And most of all, I thank God, for listening and answering all your prayers and especially mine.
Oh yeah, I almost forgot - Phase 4: CELEBRATION PARTY!
Thoughts
from the prisoner within
Communication. How do I communicate daily? Well, to get attention I groan - a cross between a grunt and moan. It's what's left of my voice. Unfortunately, because of muscle atrophy in the lung department, my breathing and groans aren't deep or powerful. After being acknowledged, I wait until the person stands in front of me to get eye contact. I then attempt to point with my head and eyes at whatever I need. The person then starts guessing. I raise and lower my eyebrows or blink for 'yes' and shake my head left and right for 'no'. Since I'm home all the time, there's instant head gesturees that are immediately understood ; bedroom doorway = bathroom, ceiling fan = on/off, tv, computer, porch door = go outdoors. But what about something behind me? I crane my neck and eyes left, right, up; of course it doesn't work. My wife will finally resort to the alphabet. She begins reciting A, B, C...,I then blink at the correct letter to spell out a key word or two. To expedite spelling, if the upcoming letter is between M-Z, I signal by nodding a half 'no'. Frusttrating? Yup, for both sides. But I'm getting used to the process. Basically, I do well with Y/N questions, and much slower with fill in the blank. My favorite response to a groan is from Cali, who answers back from another room "What do you want?"
Thanks again for listening to my Thoughts.
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