Saturday, November 25, 2017

Update from Michael re: Myotonic Dystrophy

Thanks Michael for this contribution.

    You can ask me what's new and I will usually, without thought, give you the same tired answer, "Not much" or sometimes I'll say, "Not much, what's new with you?"

If I really paused and gave it some thought I would realize that there is plenty new with me. Some of it good, some of it bad. A few things inconsequential, but most of the inconsequential will probably be glossed over or not mentioned at all.

I, of course, have continued to age and with age comes changes, more experiences, which are hopefully accompanied by wisdom and maturity. Wisdom and maturity aren't always a sure thing.

But the big things are as follows: I got a pacemaker and defibrillator (one thing) put in me (not the best thing, but at least I won't die from a faulty heart). I have a tablet that has a text to speech app on it to help with my speech (the tablet has a keyboard attached, so i don't have to individually tap every single letter). I have a benign fatty deposit (a lipoma) on my back that doesn’t need to be addressed unless it hurts. I'm about to get a job coach (if all goes as planned [this is the third or fourth try]).

But the biggest change is my life? I've been having trouble staying awake for the entirety of the day and reading any involved books for, at least, a year. We've been trying medication (primarily Provigil and Ritalin) and they work, to an extent. I still fall asleep earlier in the evenings than I used to. By early I mean 7 or 9 pm depending on the day. I can't even stay awake on some nights, even if we've rented a movie I want to see or we're watching it on Netflix or through DVR (yes, I don’t watch any shows when they are actually airing). Thankfully, I live with my brother so he can wake me up when bedtime rolls around or before (sometimes he needs help waking me, so he calls my mom).

However, why is this happening, I love books and movies, they used to be what I would use to escape from life, with a dash of video games for good measure. We were clueless what was causing this until Friday, November 10th, 2017, when we went to see the pulmonologist . She used a device to test my CO2 (Carbon Dioxide for the layman) and I had higher levels than the average person is supposed to have (I was at 52, the average is supposed to be 35-45, or even lower at our altitude), apparently my lungs aren't strong enough to expel all of the CO2 in my lungs. Too much CO2 can naturally cause tiredness. I am getting a machine (it's called a Trilogy) to help with my CO2 levels and, while it might take a while to see any change (somewhere between 1-3 months) I am hopeful it will work. I am trying to become more vulnerable and open and I’m hoping the machine will help me be alert enough to accomplish this and many other goals in my life.

Oh yeah, there’s also the small detail that my head, due to poor muscle tone, is hanging low lately and I’m experiencing a loss of balance, but those are closer to being addressed than the rest.

Michael Woodbury

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