It all feels so strange. When I am alone and I’m quiet I almost forget I have ALS. I’m not talking so I’m not reminded, at least that’s how it was until this last month. This Christmas it became difficult to stand up from a squat or get up from a chair. My left leg is fading fast….the majority of the twitching muscle activity had been in the left leg for the past 6 months. my doctor says not everyone feels the twitching 1st, but I sure do…it’s my harbringer of decay.
Last May when I did a rigorous raw food cleanse the twitching stopped for 2.5 whole months….it just went away, then returned when I added caffiene and more cooked foods into my diet again. It returned with a vengence. So next Monday I will begin a raw food regime again and see if it has the same impact. Cutting out caffiene is going to suck but so what!?! If I can delay the twitching perhaps I will extended my time and preserve my stregnth.
I believe I may have taken my last independent trip. Fairwell privacy, fairwell. Things have gotten so damn awkward! I can’t open water bottles and once opened I invariably spill or drop them. In fact the dropsies have become a daily occurance, it used to be occasional however now it’s consistent: I’m always dropping something. I know I should be gratefull that I’m still walking around but for someone who used to spin around in pointe shoes this is a pain in my AAA. For those PALS who were athletes with a high level of kinesthetic awareness, this process is a damn nightmare! As if all your cellular memory was robbed from you one night or better yet blocked- you still have the memory of how to execute a move, step or motion flawlessly but the message is picked up and spirited away before it can hit the muscle that’s just aching to perform. ANNOYING.
My meat is hanging off the bone. It’s as if the connective tissue that binds the muscle to the tendons and bones is missing and the only thing holding that muscle near the bone is the skin. The same with the skin that now hangs from the muscle as though it’s no longer interested in being associated with it. At almost any angle I can feel bone 1st not muscle -I am not skinny and I have alot of muscle. I was strong like bull! I actually think all the weight training I did in college and gradschool is the only reason I have been walking this long. I used to have traps like a man…now my neck muscles are so weak I can’t read laying on my stomach for more than 2-3 minutes at a time. I am constantly concerned about herky jerky cab drivers and possibly injuring my neck in the cab so I push my spine back into the seat to support myself.
I had intended to write for most of the day today, however I rested instead. The tremors had returned to my face while I was in California, nasty little bastards that they are. They were gone for 2 years but now they’re BACK. On my face mind you! My once so pretty face…my mouth is now pulled into a perpetual frown by the twitches on the right side of my smile like a fish hook pulling my lips down toward my jawbone. Then there is the one that feels like a piercing through my left eyebrow creating a V in the browline from time to time. But my favorite has to be the slight mobile tingle from the inside of my left eye socket running over the bridge of my nose and trailing off in my right cheek. Lovely. So I rested today, hoping that it was fatigue from traveling that spurred the facial twinges. So far it eems to be working…I’ll keep you posted.