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  • Writer's pictureRuss Newton

Great News! (and a little bit of bad News)

The great news! I am stronger than I was in the last two full examinations. On every measure! They do not have an explanation for it at all, but it is good news. And the Doctor could not find any Fasciculation's either. (A fasciculation, or muscle twitch, is a spontaneous, involuntary muscle contraction and relaxation, involving fine muscle fibers). Though the bad news is I now have been advised to use the breathing device I have when I sleep and the worse news is they are recommending I get a feeding tube as well due to the difficulty I am having eating. The argument for the breathing device was good, that small cell structures in the lungs will collapse (and not un-collapse later) as my breathing gets worse and by using the breathing assist before I need it will prevent that from happening. The feeding tube options was based on the fact I have lost ten pounds in three months and that data they have shows that keeping body weight up equals a more positive outcome for ALS patients than losing weight does. So they want the tube in now so I can supplement food taken by mouth with protein fluid introduced by the tube. The problem I have is two fold. One, this is one step closer to the exit for me. Two, I have to sleep on my back for a month after the tube is placed to give it time to heal. I can not sleep on my back so that is basically a month of very fitful sleep for me. The doc could see and hear my reluctance and change tactics on me by saying that it could take a month to get through the Gastroenterologist Dr's appointment and to schedule the procedure once I decide to get the tube. So I agreed to the appointment but will not schedule the placement of the tube just yet. I need to try to learn to sleep on my back after sixty years of sleeping on my stomach. I am not optimistic about that.

But, I am seriously rethinking my plan on when to hang life up. I was going to refuse to accept a throat mounted ventilator and check out then. But I assumed at that point I would not be mobile, on a feeding tube and basically zero quality of life. But if am going to be mobile and with it mentally, then a good quality of life may still be possible. A lot to think about after today's visit to the doctor, that is for sure.

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1 Comment

Oct 19, 2020

With good chemistry... or strong sleeping pills you can sleep in any position. I like the way your doctor thinks!

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