Amy now has the ability to drive my wheelchair. Wait. I'm not sure she has the ability. She has access to controls tethered by a five foot cord. I'm not sure whether this is an advantage or a recipe for disaster.
Today we attended ALS clinic. I was last at clinic 3 months ago. The purpose of these clinics is to assess my progress (or lack thereof). I see the physical therapist, the occupational therapist, the speech therapist, the breathing therapist, the social worker, the MDA representative, the mobility guru and my neurologist. To varying degrees they pick and poke and query and council. I can say that every individual I deal with is professional, courteous and friendly. I really like everyone there. I still believe I have the highest tech wheelchair of the bunch, though many of the other chairs give me a run for my money. I prefer to study the chair than the occupant. Much less depressing.
I believe physically I'm holding my own, however some issues have come up that let me know that this battle is anything but won. My oxygen level, more accurately my oxygen movement, is now sub-par, basically meaning that my diaphragm and ribcage muscles are weakening and I cannot draw as much air as I should. I have ordered a B-pap, quite unlike a C-pap, that will help me inhale and exhale more fully as I sleep. Apparently, those who use this device have more energy.
I have lost 7 pounds and my doctor has suggested a feeding tube. By the end of the weekend I will make my decision on this matter.
Amy and I asked my neurologist if he had heard of the Deanna Protocol, which he had, offering advice that I should not take anything that would affect my blood since I take a thinner. As expected he saw the protocol as a scam unsupported by science. I understand his position but plan to take whatever supplements I can without affecting my other medications.
A good news point: my doctor is visibly excited about a new drug that shows to be effective in energizing mitochondria, specifically in the nerve cells, potentially offering a solution to nerve cell degeneration. Three months ago he mentioned it would be available around Christmas and if it shows itself as an effective product, every ALS patient would have access to it. The announcement will be worldwide. Cross your fingers.
Merry Christmas to all the suckers who tune in to my blather. Be prepared for a massive post entitled "Who is Tracy Boettcher and What is Responsible for his Brain?"
guess I am first to 'comment'. Who 'is' Tracy Boettcher??? to everyone you mean something different,but equally special.To your family of course you ARE Dad,to your customers,Tracy,to your students,Master Boettcher. To some of us your 'blather' means more than some 'sermon' in Church,its real.uncut.period. I am sorry to hear about your pending decision,this is not one anyone should have to face. Anytime I am there for both of you!
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