Old 11-18-2012, 07:53 AM #1 (permalink)
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City: Negril
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Join Date: 2012
City: Negril
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Country: JAM
Diagnosed: 05/2012
Interest: I lost a loved one to ALS/MND.
Posts: 60
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Default night time - worst time

Greetings, my husband suffers enormously at night, the longest period he sleeps for is 2 hours, after that he must be gotten up and out into the geriatric wheelchair for anywhere between 30-45 minutes. Finding a comfortable position in the bed or the chair is daunting endeavour, the slightest wrinkle or sense of imbalance drives him crazy. We live in the carribean and there is no outside support except for a neurologist 50 miles away who has limited experience with the disease, not to mention certain drugs are not available here. But I can say for sure nights are the worst time for both of us.
I would say that he is on the downward slope of this disease, he has next to no use of his legs, his arms are very weak, his voice has lowered, he is experiencing cognitive difficulties, is unable to feed himself and chewing is becoming more difficult as is swallowing.
But we soldier on and it has become a little easier since finding this forum. Many thanks
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Old 11-18-2012, 12:22 PM #2 (permalink)
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Default Re: night time - worst time

Welcome patagyle to the club no one wants to belong to. I'm sorry you have such limited resources! If you can elevate the head of his bed about 30 degrees (7" wedge) he should be more comfortable. See if your neuro can get him a bipap with nasal pillows since he's having trouble swallowing. Have him pull his chin down when he swallows to make it easier and keep food and liquids out of his lungs. There are others here with far more experience than I with cognitive issues. Keep us posted and ask, ask, ask!

Jen
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