weak palate
 

hi- just wondering- has anyone tried exercises or speech therapy to help with a weak palate? Am bothered with it recently. Feel it even when just having a short conversation. Am trying to avoid talking a lot- during a crisis it once escalated to not being able to swallow, and needing a feeding tube. Certainly want to avoid that! Thanks

I'm afraid there are no exercises that will improve palatal strength. A therapist might be useful in teaching adaptive techniques to prevent choking, make swallowing more efficient, which is something to consider.

I had such weakness that my palate would not elevate to protect my airway at all when I was at my weakest. I get treatment at a teaching hospital and several residents came in to gaze at my useless palate when I was in the hospital. They were amazed! Sigh...

If you haven't already done it, I would suggest you consider informing your neuro of this exacerbation. There might be something that can help.

Sorry you feel rotten.

Ditto, Susan. Your neuro should be aware of any situations like this. When you have to stop talking, your MG is still unstable. What meds are you on? Please do call your neuro!

:hug:
Annie

Hi- I did talk to him on Tues. My appt is May 31st..ugh. I'm on Mestinon 90 mg every 4 hrs and Imuran 50 mg 3x per day. I can talk..but limit it as my palate feels weak and I don't want it to escalate to not being able to swallow. Thanks for your support!

Sorry, that wasn't really helpful! ;)

Have you tried taking sips of cooler water between bites or segments of food? Do you try to keep food not too hot or too cold? Are there some foods that make things worse? Like more "chewy" or hard ones. Maybe have more mushy foods for awhile that don't require a lot of repetitive chewing.

Have you ever had a sleep study? Do you clench your jaw/mouth muscles while you sleep? That could contribute to any bulbar muscle weakness.

Sometimes it helps to sleep with your mouth open. Or while you're sitting around, just let your jaw/mouth go slack.

Anyone else have suggestions on how to lessen stress on the bulbar muscles?

Annie

Susan, I'm very sure that exercise won't help the palate. I'm usually affected when I've done too much. I have to get a good night sleep to get some relief. Is the weakness all day or more prevalent in the evening?

Annie, I find myself clenching my jaws at night while sleeping and have tried to relax my jaw during the day, I catch myself sometimes during the day clenching, but relax my jaw as soon as I'm aware. I'm not sure if the clenching is MG related. I was told it's Bruxism. If I gently keep my teeth together, my teeth chatter. So, why does my palate and bulbar muscles get weak at night instead of morning?
:confused:

Have you talked to your neuro about a plasma exchange? Or an ivig? I know when I was down the plasmapheresis; that saved me from a peg tube. O that my stomach is in the wrong place too. Surgury failed and did not want the inovasive surgury. Belief in God that he makes all things possible is what kept me from falling and giving up.

My doctor said that my insurance won't cover IVIG.

Yes- Plasmapheresis was the only thing that helped when I was in crisis years ago.
but my MD says its usually not used unless symptoms are very severe- ie-can't breathe; can't swallow. From my understanding its a much longer term solution than IVIG. I've heard that treatments are needed every few weeks. I was also wondering if a change from Imuran to Cellcept might help????

Quandry, Those muscles are probably ones you use more during the day, so they get more fatigued by the end of the day. It's probably that simple. ;)

Susan, How long have you been on the Imuran?

Annie