Help im drowning

[Mahealani]

I have limb onset since 2008, can't move arms or legs. Can still sit in recliner but neck is getting weak. I got a PEG in December 2010 and I lost my voice except for some groaning. Drooling is out of control and I'm taking Sal-Tropine to help control it. HOW DO PALS SLEEP WITHOUT CHOKING? I sleep on my back with my head turned to the right so I won't choke. I'm having mouth spasms, yawns and bite down hard. I'm having a hard time not choking after liquids. I have lost a lot of weight. Any advice to help? I have a hospital bed but can't use it because I choke if I'm on my back. I have baclofen but don't use it because I don't want my good muscles to get weak. A Trach has been mentioned but I'm not sure if I want it. Let me know any suggestions.

Mahealani

 

[brooksea]

Mahealani, does your hospital bed not prop you up like the recliner? You need to be propped up at a certain degree, depending on your comfort level.

There are neck supports. Some are just the soft sort from the store for when you just need a little support and my husband likes Shanes neck brace when he needs more.

My husband is now on Artane for saliva and it is working great. It is a Parkinson's drug and I don't know why it works for saliva, as I haven't investigated it yet.

 

[Sequoia]

Mahealani, I sleep in a recliner so I am sitting up enough so I do not aspirate on saliva or if I sleep in my bed I make sure my head is really elevated like I am in the recliner. I think my problem is that I panic at the thought of aspirating if I am alone. Do you have one of those baby monitors so you can make noise if you have a need?

If you have a peg, you should be able to get enough formula to keep your weight up.

I am glad to see that you can post here. There is so much support on this forum. Do you use a head mouse or eyegaze? Hang in there! Gentle ((hugs))

 

[notme]

HI

The baclofen shouldn't weaken your muscles--it will help, though, with the spasms that are likely causing you discomfort. After the initial adjustment period, I think you might find that it helps.

As already suggested, you can elevate the bed so you're not lying flat--and there are a lot of meds on the market for excessive fluid production. Some use Elavil

Definitely sleep elevated--it will also make breathing easier if that's an issue. Do you use a bipap? Also, as suggested, use a monitor so others can come help if it's needed quickly.

 

[Beach Bum]

I had the Botox shots Oct 7th and they have reduced the drool by 80 or 90%,I started with drool problems 9 months ago and use dish towels 24/7 My tongue always is in contact with it,also I fold the towel and put it between my teeth if I have jaw spasms,which I have all the time.Got my hospital bed 6 weeks ago and keep the head up and two towels in bed with me,no problems chocking,go to sleep on either side of my body,always have extra pillow put it on a rail,put my arm over it very comfy,good luck-----------Ken