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.
What is worse than being sick to your stomach? The gagging reflex. Then being careful not to aspirate. I was sick to my stomach last night, then again at 4 am, and now again. Something is not agreeing with me. Funny but I don't eat anymore or drink. everything is through the tube. I have such a foul taste in my mouth. going to brush my teeth. On another note. Snow is finally falling. We have gotten several inches with more on the way. I will have to take extra precaution when venturing out.
What a ride this has been. Almost 6 months have passed since that dreaded day. Just an update. I now have the dps, which got infected and was unable to use for 30 days. infection has been gone probably about two weeks now. I got the peg tube replaced with the mic-key. so far no trouble. I don't know if it is als related but my left hand is hurting. it started out with just tingling in the pinky and ring finger. but now when I wake it is painful. I use a hand device when I sleep and a glove during the day.
Well back to Dr Dick... the ivig thing was deemed pointless,no improvement,only effect was just some skin issues.. spinal fluid was normal...but fasciculations, esp top half was described as florid..arms are still heavy and right hand weakness now as well as left...So he's killing a bit more time again,sending us for another emg/ncs and return in the future...ho hum eh?