I feel for you, Patrick. I was diagnosed January, 2014. But I've had it around a year and a half and am already wheelchair bound with only a tiny handful of things left that I can do myself, example: type with one finger, control PWC. Anything that requires any kind of finger/arm strength has to be done for me. I'm 46 and feel 106. Plus, I have every other symptom of ALS, and all of those worsen weekly. It's f'ing scary. I use humor a lot to cope. I find that if I accept my many limitations, it's easier to laugh at myself when something goes haywire. Obviously there is nothing funny about having ALS, you can't get anymore serious than being terminal, but in my life with my aides, family, and friends, we have done some hysterical things involving transferring, bathing, dressing, etc. I'm just one of those people that believe, shit happens, you go with it, or you can be miserable. So I go with it with a smile. This does NOT imply I do not get frustrated or depressed or feeling sorry for myself because I omost certainly do. But I try very hard to take a deep breath, say to myself that, it is what is, nothing is going to change it, therefore I have to accept it. But, I do NOT have to like it. I have great difficulty speaking and will use the written (typed) word as an expression, through journaling and poetry. One does not have to be an English professor to do these thing. I write what I'm feeling in the moment and anything that pops into my mind. It is satisfying (for me) to type rows and rows of the same thing, "FUUUCCKKK MEEEE!" or "F**KING F*CK F*CK F*CK!" And then I look at it and smirk (mostly). I honestly do feel better than before. The moment may not last long, but it's something for me.
These things, for the most part, work for MY personality. We are all our own individuals just like each pal's progression is different.
Hang in there, Patrick!
Here's a joke I made up and texted to my best friend:
If a caterpillar (her) and a snail (me) were in a race,
The caterpillar most assuredly would always win.
But, if a caterpillar and a snail IN a PWC were in a race,
The snail most definitely would win every time.
Eat my dust, b**ch!
I know, it's lame but I did it with all the pictures and symbols in my phone... it was cute and it made her smile because she was having a stressful day.
Kim