ALS update time!

Hello, Reader-land, and welcome to the latest edition of, what’s my status!?!?  It is great to have you all here.  Try the veal!  I will be telling you of my status and little nuggets of things that I want you to remember about ALS.

Remember, the trial is done.  I had a very positive appointment with my neurologist at Hopkins, and I am getting good results on the leg pain with PT.  Following up on Right to Try, that is off the table.  And I have a weird variety of ALS, which isn’t on a list of known genetic links to ALS.  I truly am one of a kind!

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One of a kind! 

I can’t lift my arms to drink anymore.  Mel will help me, occasionally, because I can still swallow, but now I generally drink everything, even beer, whiskey, chartreuse, and coffee in the feeding hose.  I had a margarita last night and had terrible reflux.  Tequila bad.  I also don’t really eat anymore except for pleasure, just to taste.  I probably could chew, but it isn’t worth the effort, I get worn out.

My speech is terrible, but you knew that.  And I am losing mobility in my faaangres to text or hold the phone.  Looking at mounts for the Tobii for the wheelchairs now. download (1)

I can shuffle around with assistance.  Right now we are having our bathroom redone so I can use an electric shower chair, roll in, hose off, and go!  But I am using the kids bathroom, and I never thought I was going to die more times in my life!!!  The high walled tub, the narrow walkway, and maneuvering in and out of the shower with that bathmat!   And I will explain, tidbit here!

ALS stops your brain sending signals to the body.  So, when I am standing up, it can take me up to a minute for my muscles are balanced.  What you might take for granted, a simple leaning on one leg or another, takes me thirty seconds.  This means too that if I lose my balance, my muscles will overcorrect one way or another.  And if the handhold is slippery, well then the subconscious control of the fine muscles that provide balance get really spastic.  It’s been fun, especially if the dog bites my toe.   I definitely feel pain.

Another tidbit is talking.  If I am having a conversation with you, I will be slow in speaking and reacting, for the same reason as above.  If you surprise me with a hi or spontaneous something, it will take me ten seconds to respond because I have to draw breath and project out a greeting, and if I have to lift my head, well triple that.  If you interrupt, I might not be able to get it all out.  Slow down, and we’ll be cool. download (2)

It’s not much, but that is the summary of what’s my status?  The fun game you can only play when IIIIiiiiiiiiIIII give you a CLUE!  Bap Badda bah bah bah bah BAAAAAAAH!

Any other questions, ask away!

1 thought on “ALS update time!”

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