Sleeping position

[GaryM]

Just wondering what position most people sleep in. I have always slept on my side. Now that I have virtually no muscle on my left shoulder and arm, it is quite painful if I lie on either side for more than a few hours. So, my brain seems to wake me every 1.5 or 3 hours to turn over. This in itself is awkward because I have to lift my left arm over so I can struggle over onto the other side. I've tried going to sleep on my back but I seem to choke on saliva. Also, the physio said that sleeping on my back wasn't good with a partially dislocated shoulder. Any tips?

[matthew55]

Being facicious sleep on your right but seriously I haven't a clue. I'm still okay both sides but wake up with a painful left leg. Random is MND. 😁x

[Bowler]

Ann had similar issues. We tried on her back, on her left side even half and half with pillows down her back to stop toppling. The medics said the optimum position to help with breathing was 45 degrees. That didn’t work at all. In the end we settled for me turning every 2 hours or so. Sorry can’t offer any solution

[Nettie]

I have to lie on my back with the Niv so have the hospital bed raised both ends as I can’t sleep flat, but I sleep better on my right side so I try and get a couple of hours without the Niv 🥴

[jd58]

Left side and then back and then right back on left side about 3am then on back then with partner up right swarmed out with vent mask on 👌

[Ellie]

GaryM (In an ideal world) The key to a good night's sleep is a good mattress on an adjustable bed - if you don't want an adjustable bed yet, having a good mattress will go a long way towards comfort. The best mattress is an alternating fullly-air mattress, with adjustable firmness and adjustable circulation intervals, yet most folk seem to be given an 'air' mattress which is firm and unyielding, and just not comfortable enough for joints unable to support their own weight. A good air mattress will feel like sleeping on nothing, so you won't feel the need to turn or any pressure points. An adjustable bed, with its head raised, helps with swallow (as an aside, would you think of taking a saliva-reducing tablet pre-bedtime?)

I cannot turn, nor move much at all, when laying down, so sleep all night on my back on a very good mattress, pain-free and no urge to turn. I have also slept on hybrid mattresses and on lesser quality air mattresses whilst in respite, and they don't compare.

Not that it'd d improve your sleep Gary, but having a bed rail to grab onto might make turning a bit easier, notwithstanding the partially dislocated shoulder which, incidentally sounds painful - is your arm in a sling?) The bed rail/grab bars sit under the mattress usually.

What type of mattress do you currently have? It is worth contacting your OT.

Love Ellie.

[Ellie]

I try and get a couple of hours without the Niv

Is it because of the mask, Janette? You shouldn't have to choose between sleep and respiratory support 🤨 There are various mask types and even special pillows for different sleeping positions whilst using NIV.

Love Ellie.

[GaryM]

Thanks everyone for all the replies, especially Ellie. That information will probably be invaluable in the future for me and others.

At the moment I'm still in a normal bed with my wife. Not quite ready to change to a profile bed just yet, because I'd probably end up downstairs, which creates even more problems. We only changed the bed two years ago when moving house and certainly don't want to get rid of it. It's a Dunlopillo and was quite expensive. The mattress is the firmest that they do and until this illness, gave the best nights sleep of any I've slept on. We had a similar one previously for about twenty years and that's now in the spare room. I think the wife would get rid of me before the bed.

I should clarify the shoulder position. It is weakened by muscle loss and susceptible to subluxation. I think it's still in the socket, but I wear an orthotic support during the day to take the weight of my arm off the joint. During the year when I thought I had CIDP I asked about physio and was told they don't normally offer it. As soon as I got the MND diagnosis the physio immediately requested the support plus a foot splint. The joint might not have been quite so bad if I'd had the support earlier. Who knows?

I might ask another question about saliva soon.

[Ellie]

Gary, as an FYI - I slept on my air mattress on top of my half of a normal mattress in our double bed, before moving to a profile bed.

[GaryM]

Hadn't thought of that. Thanks, Ellie.

[Nettie]

Is it because of the mask, Janette? You shouldn't have to choose between sleep and respiratory support 🤨 There are various mask types and even special pillows for different sleeping positions whilst using NIV.

Love Ellie.

Yes Ellie, I tried numerous masks, none I’ve tried have been successful on my side, I’m using under nose nasal mask at the moment which has been the best so far, but I end up snoring which wakes me up or end up my mouth being completely dry. Janette x

[matthew55]

You honestly get used to dry mouth. We humans are very resilient 😉😁x

[Ellie]

I end up snoring which wakes me up or end up my mouth being completely dry.

Does your NIV machine have a humidifier? That could solve Sahara mouth. If it doesn't have one, it can be supplied.
A (very alluring 😄) chin strap could solve the (equally alluring 😄) snoring.

Love Ellie.

[Nettie]

Yes I have a humidifier and tried the chin strap 🥴 love Janette x

[Ellie]

I am sure you've tried various settings on the humidifier, all to no avail 😩

Did you try tha Amara View mask?
Amara View.jpg