Where this started...
Every end has a beginning... sometimes the end of one thing is the beginning of another
After my diagnosis last year, and after letting my family and friends know through a variety of networks (social and otherwise), I posted the following to LinkedIn:
Jeffrey Ouellette
The feedback was touching. It was encouraging to know that after all my years of professional work, I had sown a garden of peers/friends who were there to listen to my pain. I'll be looking to the fruits of that garden to support me through to the ignoble end.
Even today, this is hard to grapple with. This is as much an intellectual and emotional battle as it is physical. Every time the symptoms get worse (and never better) it takes a lot of effort to adjust... physically, emotionally, and intellectually. As ALS (one of a group of motor neuron diseases, or MNDs) impacts each patient differently, the progressions, often in jumps, from plateau to a lower plateau, are unique. Some patients have a slow and long progression, maybe living 7-10 years after diagnosis, some will die between one and three years. The average is 3-5. Stephen Hawking managed to live with ALS for 55 years after his diagnosis... the rat bastard /s. Why? Some speculate, but no one really knows, like so much of the why's of ALS.
For me, the prognosis is fuzzy but not encouraging. My symptoms have been getting markedly worse in a faster manner than naively anticipated, since diagnosis. The last year has been more regressive than the previous two. As of today, walking is VERY difficult... I now have a lightweight electric wheelchair for use outside the home and use crutches much of the time inside the house. My upper body experiences random spasms and cramping, but not yet to the extent of my legs... eventually, it will. Lifting things above my head is no bueno. Breathing and eating are still functional, for now. Talking? Well, I get tired out from talking for too long... yeah, yeah, the irony... and mercy for some of you... joke's on all you, I still have a keyboard... and now a blog, muthafuckers.
And I'm not doing nothing, in the meantime. I can still work... have some work... could use more work... want to work... have to work (can't afford to live, can't afford to die!), but not 8+ hours a day, 5-7 days a week. I have to make time to rest, and eat, and move a bit (but not too much... fuuuuuuuuccccccccckkkkkkk). Ideally though, I wouldn't have to work and could live out the short remainder of my days playing games, enjoying the company of friends (with the help of some beer/wine/liquor 😉), traveling, and building LEGO sets. I occasionally attend rounds of physical therapy and have a standing bi-weekly psychotherapy session (you're a blessing, MT) to help me work this out as it unfolds.
So, stick around if you're inclined to and see what happens, either out of morbid curiosity, sincere concern, or schadenfreude (oh, I know there are a few of you out there... and you can bite me).