Sleep and ALS

[Susan Gray]

I was having major trouble sleeping while awaiting the diagnosis which was most likely due to anxiety and not knowing.  My PCP prescribed Ativan to take before bed to help with anxiety and insomnia.  I could go to sleep fine but would wake up and not be able to go back to sleep.  The Ativan helped initially, but I soon realized I didn’t want to take it any more.  Thankfully, for now, I’m not having trouble sleeping.  I listen to soothing music when I go to bed and am able to go back to sleep if I wake in the night.

[Dagmar]

A study in 2019, came to the conclusion that newly diagnosed ALS patients didn’t sleep well. Duh! We all had problems sleeping during those first months (many possibly more) – – due to shock, trauma, worry, fear, etc.

But a good night’s sleep is one of the best things a pALS can have. I know that sleeping well has certainly helped me recover from the day and allows my body to recharge.

We all have different approaches. Here’s what I’ve learned to do and practice that gives me 8-1/2 hours of solid sleep:

Morning: stretch and focus on the positives of the day ahead. Healthy breakfast (and a cup of coffee!)

Day: Keep my mind involved in projects, take many exercise breaks. Eat well and drink adequate fluids.

Evening: Wind down by putting away devices & technology. Watch a favorite movie while knitting. No fluids after 7 PM.

Bedtime: Gentle stretches. Light’s out: mentally review my ‘list of gratitudes’ from the day. Deep breathing….fall asleep.

🙂

[Susan Gray]

Thanks for sharing, Dagmar.  That’s great advice.  I have also found combining gratitudes with deep breathing is a wonderful way to fall asleep.

[chuck-kroeger]

I’ve slept in my recliner pretty much full time the past 7 1/2 months.  Had some trouble getting out of the hospital bed and I rather enjoy the company of my wife who starts out sleeping in the other recliner next to me before she heads off to bed.  I take melatonin and mertazapine along with turmeric each night before ‘bed’ and wash it down with cran-grape juice and ‘clear-lax’.  I have never slept well and now sleep a couple hours at a time.  I wake up periodically to adjust my breathing nose-piece. I seldom get out of ‘bed’ before 9 and many times lay there relaxed until 10 or 11.  I have a long prayer list and spend my last 20-30 minutes talking to my Lord before falling asleep.

[fairfrank]

Same here. Thx to our recliner for sleeping. Better comfort and quality of sleep. Which model do you use and can recommend? Probably someone ready to advise me which model to choose to renew mine? For example, from this list

[louise-cort]

Dagmar, your messages are inspiring. Could you say more about your exercise during the day–morning “stretches,” “exercise breaks” during the day, evening “stretches.” Can you describe your exercises in more detail?

I also wonder whether you can recommend specific exercises for strengthening core muscles. I know this leads away from the current topic, but I’ve been wanting to ask. Thank you.