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How Well Are You Sleeping?
A study in 2019, came to the conclusion that newly diagnosed ALS patients didn’t sleep well. Duh! I think we all encountered sleep issues during those first months following our diagnosis of ALS; feelings of shock, trauma, worry, and fear. In addition, the ALS symptoms affecting our arms and legs required us to learn new ways to roll over (or reevaluate our sheets and blankets).
But a good night’s sleep is one of the best things a person with ALS can have. Getting a good night’s sleep is super-important for our brain and body’s health. I found this short TED Talk helpful. Sleep is Your Superpower
How has having ALS affected your sleep? What are you doing to improve your sleep? What are your biggest challenges?
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3 Replies
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I sleep in hospital bed with a latex (not made for ehospital bed) mattress. I can’t move in bed to adjust my body position. I wake a few times each night to readjust the amount of leg and head elevation to make my back hurt less. I usually sleep 6-7 hours per night which seems enough. I’m looking for advice on how to select a recliner chair to sleep in when visiting family. I use a PWC and can’t go to store to try them.
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I think ALS has reduced my ability to sleep through the night. I feel fortunate if I only make one trip to the bathroom.
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I find that I sleep surprisingly well, averaging around 10 hours in bed, although I have great difficulty changing position, have a restricting BiPap machine and cannot get up without help to use the bathroom. Using a male urinal while lying down (or sitting up, for that matter) is no picnic, and I imagine it’s even worse for women. On the rare occasion that I need to get to the toilet at night, I use Amazon Alexa to Drop In on my wife in the next room.
Thankfully, apart from occasional cramps or stiff joints at night, so far (at 2 years in) I do not suffer from chronic pain. Sometimes, if I’ve had a disturbed night, I will take a nap in my lift chair. As another poster commented, it seems that a bedtime dose of Riluzole along with 5mg of Melatonin makes for a good sleep. Typically with this disease, things change all the time and we never know what’s coming next.
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