Wednesday, September 15, 2010

ALS update

It looks like I'm doing some sort of pose from the movie "Titanic." Haha. At the time I was trying to walk into some crazy wind on top of the Wellsvilles. The photo dating back to 1995 was from another lifetime.

Background: The first ALS symptom was 3 1/2 years ago. Diagnosis was 2 years 3 months ago.

I think we will start at the top and work down.

Speech is continuing to slow down. Not a lot of power in projecting my voice.

My hair gives a thank you to my sister-in-laws, Sandi and Erin. This summer they gave Jeff lessons in how to put my hair in a ponytail. He is such a good sport in so many ways.

My arms and shoulders are weak. If I need to reach sometime that is eye level, I go on my tiptoes because then I am a bit taller and it means 3 less inches I have to lift my arms up. Everything is heavy.

My hands. The fingers are starting to curl in. Some fingers I can't extend all the way. It makes for an funny wave. My right thumb barely moves and for the most part it stays curled next to my palm. I do try to stretch it throughout the day. If I want to grip a glass in my right hand I will use my left hand to position my right thumb and then wrap the rest of the fingers around to grip. Drinking straws have become handy to eliminate the need to lift a glass all of the way. There is concentrated effort to keep my hand steady while using utensils in general. I use my left hand to pick up small objects. When taking my meds. often I will dip the tip of my finger in water and then when I dab at a tiny pill it will stick. From there I just have to lift it to my mouth. For all the zippers on my pants, there are now attached loops where I can hook my finger in and pull up. There is no way I can button my pants and so I use my fastened belt to keep things flat. At church picking up the sacrament bread and tiny water cups is difficult. Trying to shake hands with someone when my thumb doesn't lift up is awkward.

My legs. Balance is an ongoing problem with the result being more falls and more bruises. The real eye opener was when I tripped on a gravel path and went down. I was able to get my arms out in front to break the fall. But there was not enough strength to prevent me from grazing my chin and nose on the gravel. Braces and my hiking pole should be the norm when I'm out. When I don't use them it's because I am being stubborn or stupid. Probably both.

Walking. The heel to toe walking motion has been gone for some time. When I walk in the house without braces I concentrate to get my foot flat because my toes want to land first. It turns into more of a shuffle.

I sound repetitive from previous posts. I think back to a year ago on what I was complaining about then and in comparison to today...back then I had it good! That must mean that I better enjoy today.

(Are these updates helpful? Yes? No? I'll do one more "me" after this and then get back to the kids.)