I believe I need to clarify my situation.
I am in a wheelchair about 25% of the time. The other time is spent walking in sticky socks, combat boots (really help) or with a walker. My mobility has on several occasions, degraded from sticky socks to wheel chair in as little as 30 minutes. It seems that when things stop working, they stop working pretty quickly with little warning.
Secondly, driving is a major issue. I can drive my vehicle for about 15 minutes without issue. After a while, the vibrations and having to hold my legs in a particular position trigger spasms and things go bad pretty quickly. This time is lengthened considerably if someone else is driving me around. However, riding in a vehicle for a length of time requires a bit of retribution from my body.
Recently, there have been days that I’ve walked 7,000 steps. This is followed by two solid days in a wheel chair. It’s like, when I can, I can. Then, I can’t.
With the late addition of another evening med, my body seems to be able to repair itself most nights. I wake up in the morning with a great degree of mobility. I’m a bit uncoordinated. But, since the addition of the new med, my morning capabilities have been greater than they have in over a year.
I must rest, if not sleep, after lunch. Not doing so, leaves me shuffling a walker or pushing a wheel chair.
I have season tickets to Le Petit Theatre.
I cannot remain in the seat.
I can judge how bad my baseline is by how embarrassed I am when I go to the bathroom.
Early administration of the cocktail seems to put my body into a state where it wants to go into spasm, but can’t. During these times, I feel like a super hero. I feel like I could shoot bolts of lightning out of my hands. My entire being feels electrically charged. I sweat profusely and tears fall from my eyes as they are squeezed out.
However, the cocktail is responsible for an absolute great reduction in the veracity of spasms.
I had a really bad time this last Sunday morning. My entire body was contorted and I had Charlie Horses over much of my body. However, them waking me up, were soon diminished by the taking of the cocktail.
What used to leave me writhing, contorted in pain for 48-96 hours, now, last a day.
I am happy about our progress.
We are now pursuing genetic testing for Kennedy’s Disease. My wife has confident that I matched a lot of markers and wants the test. There is a newly FDA approved drug that is used to treat it.
Additionally, a positive on this tests means that my grandchildren will have the benefit of my writing about the disease. I will be able to help them, even if I never see them.
Things are progressing. Two huge steps were the cocktail and the combat boots. Those two items have changed the game.
Thanks for reading,
Jay C. Theriot