It was probably almost 4 or 5 years ago that I noticed that I had a tingling in my left arm. Both my hands would get really cold and on occasion I'd wear gloves while watching tv. My doctor took x-rays and blamed things on arthritis . About two or three years ago, I started to lose weight ..lost over 25 lbs right now. But the real indicator that something was amiss was when we moved from Branchburg, NJ to Voorhees NJ. While putting full moving boxes away I couldn't believe how heavy they were as I struggled to lift them over my head.
Then, my son Michael, who had not seen us for quite a spell, saw me without a shirt on and was really concerned about the muscle loss and weight loss in my upper body.
Even before we moved, I knew I should see a neurologist, but figured I'd wait till the move here was complete. So I eventually saw a neurologist locally, who turned out to be a pretty crappy doctor with the bedside manner of a mutant. But after misdiagnosing me, he did send me the pros at U of Penn in Philly, to where I'm still being cared for.
So that's when, after strange electrodes were attached to me and then to a laptop, those fateful words were uttered.
Officially, I have had whatever it is I have for 2 years. One doctor said more like five. Believe it or not, that's the good news. Proper ALS is alarmingly quick to disable it's victims and kill them in a few short years or less. My case so far is slow moving.
So what is ALS and what does it do? Here's the official word.
ALS is a disease of the parts of the nervous system that control voluntary muscle movement. In ALS, motor neurons (nerve cells that control muscle cells) are gradually lost. As these motor neurons are lost, the muscles they control become weak and then nonfunctional
But like it says, everyone's progression is different!
For me, besides the weight loss, and loss of upper body arm strength and muscles, this disease has affected my chewing and swallowing of food. I choke very easily and have to thicken most liquids before I drink them. It's caused to me to stress out when I go out to eat with others as A, I don't want to gag , or cough like a moron during the meal and B , I also have to make sure what
I order is easily chewed...think stuffed shells, fish, mashed potato....etc.
My energy level is low, I tire easily, have shaky hands and head at times, and I sometimes I just feel somewhat crappy and out of it . My voice is raspy and tires easily. You all know I like to talk and eat!
The real stress for me is what will tomorrow be like? There was no deterioration in my condition for almost a year, and then all of a sudden about two weeks ago, I noticed I was having greater chewing/eating/swallowing difficulties. Don't think bread is in my future. I also noticed a tad more weakness in my arms as I attempted to start our leaf-blower.
And that is the cause of the anxiety I feel .
But I didn't write this to gain your sympathy. I did have a selfish motive because I knew that just by writing this blog, things wouldn't appear to be so bleak. And they don't.
I'll try to keep you updated. I certainly welcome your prayers!
