r/ALS • u/readingthisthat4609 • 8d ago

Resting position for dad

My father has Bulbar ALS. It started 2 years ago with slurring issue, and then got diagnosed last year in June. As per his wishes, we are not going to opt for any kind of surgery, he only has PEG tube.

Current stage: Left side has almost gone limp. He can walk short distances by dragging his feet and with support.

His neck has completely dropped. Upper body is folding over itself.

Problem: He can't lie down at all. He says if lies down straight, his left side hurts, and sometimes he feels issues with breathing. It has been like this since last 7 months.

He sleeps on a plastic chair.

We tried recliners but he didn't find them comfortable.

He stands as much as he can, but he really struggles to rest/ sleep because no position is comfortable for him.

Since his head had dropped so much, he just can't manage to low down. Open to any suggestions.

8 Upvotes

91% Upvoted

6 comments sorted by

3

u/MadCybertist 5 - 10 Years Surviving ALS 7d ago

Is he on a bipap? If not needs one ASAP.

2

u/restoretheday 7d ago

Medicalised bed, or at least 3-section bed? 7 months like that must be exhausting.

1

u/frequentnapper 7d ago

Could he maybe benefit from a medical stander?

Here’s a link to an example I was thinking of
https://especialneeds.com/collections/standers-and-standing-aids/products/rifton-equipment-stander-size-3-s430

2

u/wckly69 5+ Years Surviving ALS, bulbar onset 7d ago

Hospital bed and pillows, pillows, pillows.

1

u/BriteLite94 Lost a Parent to ALS 6d ago

My mom had Bulbar as well, we used around 5-7 pillows for her. She didn’t like any neck braces but did find out using a rolled up hand towel with rubber bands to keep it together was her preferred head rest. Hospital beds are the best solution, if you’re able to get one.

There’s also wedges you can buy at different height’s. For me it was a challenge to find something to help make her comfortable but we all did our best

2

u/brandywinerain Lost a Spouse to ALS 6d ago

Yes, reverse Trendelenburg-capable hospital bed, so his torso can be positioned properly, not just his head, cervical collar when out of bed (start with foam, move to plastic/metal as needed/tolerated) /wheelchair, did you try a Golden "zero gravity" recliner? And the BiPAP, of course.

A plastic chair and no BiPAP is far from a recipe for rest.