Saturday, December 3, 2016

What does ALS feel like to me?

Some friends (and even one stranger) have recently asked me what does it feel like to have ALS?  I thought that might be something that other people want to know.  So, here it goes
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Before I start, I think you should know that this is what ALS feels like to me.  It might feel very different to others with ALS.

My legs feel heavy.  My right leg feels much heavier than my left leg.  My right foot has no more strength or muscle control so it just hangs there.  Therefore my toes kind of hang as well.  When my right foot is flat against the bed, my toes tend to curl under a bit.  Any time I need to walk I have to lift my right leg using my hip.  Otherwise I can catch my big toe and that can make me fall.  There are times even when I lift my right leg to walk, my big toe drags a bit.  My left foot is starting to drop but not nearly as significantly as my right foot.
My feet are always cold.  It has something to do with circulation and always being in a seated position.  It is one of the reasons I need to stretch out a bit during the day, so I am changing my position.  When I get undressed in the evening my feet are usually a blue-ish or purple-ish color.  I don't like to sleep with socks on because if I have to go to the bathroom, I might slip on the tile floor. Barefoot is safer.  I put the blanket over my feet and the weight of the blanket push my toes down on my right foot.  My heels tend to ache in the middle of the night, I think because of the pressure on my feet, so I turn to sleep on my right or left side.  Turning to my left is much easier than turning to my right.
My arms also feel heavy.  Not nearly as heavy as my legs.  I can't hold them above my head and using them for more than a few minutes to do anything tire them out.  I am finding that my elbow joints are a bit achy.  I no longer have the strength to write for more than a few minutes, and when I do write I do so very deliberately.  Typing is much easier because I can rest my wrists and just use my fingers, but even typing takes more energy than it used to.
Eating with a fork or spoon has become a bit more complicated.  The utensils are heavy to me and lifting them to my mouth takes more of an effort.  I noticed yesterday that I am bringing my face down to my food  - kind of meeting the fork halfway there.
I used a wide foam grip on my toothbrush.  Holding things full fist rather than like a pencil gives me easier movement.  Sometimes I use an electric toothbrush.
I am starting to develop what I call "drop finger".  When I go to grab a cup, for example, my pointer finger doesn't stretch out in the same way as my other fingers and gets caught in a bent position against the cup.  Again my right hand and fingers are weaker than my left.
As my body relaxes at night my muscles twitch.  It used to be just my leg muscles.  Now it is my arm muscles, and some muscles that I wasn't even conscious of, like my neck muscles.  A few weeks ago my neck was really tired at the end of the day.  That seems to have subsided, probably because I am making sure to lay down a bit every day.
My speech is slower.  Like it takes more energy for my tongue to help me make all those sounds.  It is kind of slurry when I have been talking a lot. People who see me all the time might not notice it. People who go long periods of time without talking to me might.   I definitely slur my words after one glass of wine!

I didn't write this for anyone to feel sorry for me.  It is really just for information.  Feel free to ask questions.  Its all good.

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