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CALS in Recovery: Life Four Years On

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:

may 15

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...

Letting my freak flag fly

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.

Nauseous

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.

Continuing my journey

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.

still don't fit in any boxes.

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?

polite hotkey to suggest dihals types go away

Well -- Several of us have tried to share our experience with you and your fears. The consensus seems to be that you need to resolve your issues with medical professionals and/or do not have ALS. We do empathize with your fears, but there is no more we can help you with at this time. This note is not to deter you from your investigations, but just not on this forum. You asked, we answered, so please move on.

Stacked breathing, also known as breath stacking

Stacked breathing, also known as breath stacking, is a specialized type of exercise that typically caters to people who have respiratory difficulties, but also benefits athletes and virtually anyone looking to improve their lung capacity and breath control during exercise. Practiced regularly, breath stacking produces numerous benefits for athletes. Technique

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