I often read about PALS fighting the battle and being told not to give up. Every time I read that, I feel a little confused, and now I understand why. That view assumes a war. And wars can be won or lost. Too often, people dealing with ALS think they're in a war that they're bound to lose. But that's not how ALS works. Normally, life in middle age is a fairly comfortable ride, with no idea how long it will last or how the end will come, so we ignore that.
When I first read EKR's On Death and Dying decades ago, I was elated that someone would bring such an important subject out into the light. But I was skeptical of her methods. Indeed, now there is much criticism for her unscientific approach. The 5 Stages of Grief taught in Psyc 101 are good food for thought, but they're certainly not the final word. You might find a book on grief to help. To be honest, I flipped through some books at the bookstore, but never actually took one home.
I was raised as an only child, with no concept of family and terrible social skills. Yet after my wife died, somehow I had to be a single dad.
I wanted to start a blog months ago, but never could find the link. Maybe I had to wait a certain period to get access...who knows? Anyway, I was diagnosed with ALS in June 2014. At that time I had a slight toe drop but no need for orthotics or a cane. My voice sounded strange to me but most everyone else said I sounded fine. Maybe they were just being nice. My right hand was a bit weak, but nothing bothersome.
Up to now, I've always been curious why people would say 'you're so brave' facing ALS. It just didn't make sense to me. After all, we're just doing what we have to do. Friends and family have abandoned me. Sometimes, ALS will even destroy families. I've seen more than one spouse leave a PALS. Why? People can't relate to ALS. The 'terminal' part of the disease freaks them out. They can't get it out of their minds and they don't know what to say or do, so they panic and avoid us. Even our best friends get really uncomfortable and might clam up.
Well, 4 years later -after my first 'episode' (how I refer to my spells) I was finally told that I suffer from Hemi-Facial spasm. My MRI shows an active legion on the left side of my scan however it hasn't changed greatly since my first MRI in 2010 so that is promising. Most days are great- I am fortunate that my illness doesn't effect me everyday. Usually comes on when I am fatigued, overheated or during my menstruation. My neurologist hasn't ruled out MS but says if it is MS it is slow to progress currently. The only thing that is odd for me is that my spasm is Atypical.
It's been four years since my PALS Krissy passed. That was the hardest physical work I've ever done. Caring for a paralyzed person for months is a full time 24/7 job full of life-threatening surprises. It was REALLY tiring. I sometimes fell asleep in traffic. Of course, now I think of Krissy all the time. During the first few weeks, I cried or teared up at night. Now I think mainly of the good times. There are no more tears. Just smiles. So here's what happened after it was all over:
Well a little news for those who are following my story... I went back to Dr dick, and had some respiratory test recently.. Still slow progression so he's going to give the ivig trials bigger go, five days this time, beginning day after my 40th birthday.. If I could I would cross fingers...
New Forum names PDF Dec 31, 2014
Almost cut my hair... The black ladies I meet get so excited and exclaim 'can I touch it?' And I always bow my head to their hands. They seem to appreciate a big head of silver hair. Most men cut their hair so short these days, it's like they're all Detective John McClane. But I'm the only one whose roots are true to my roots. I saw the original Earth Day; the war was over but the hippies still needed something to complain about.