Hi all , I'm after some advice please. As well as MSA my friend has head drop syndrome and is finding it more and more difficult to eat. She has an array of collars, soft and hard. The soft ones don't keep her head / neck up enough to be able to swallow easily and the hard plastic ones dig in her chin, making it difficult to chew. She's losing a lot of weight ...
Has anyone else had this problem and know of any way to fix this? 😊 Thank you x
Hi
Head drop is a common effect of MSA and it does cause swallowing issues, but so does MSA in it own right.
My wife has swallowing issues and some time ago we decided to get a PEG tube fitted which allows liquids to be fed directly into the stomach. This is an invasive surgery and you have to be well to have it done which is what we had it done earlier. Visit MSA.org the trust web site for a lot more information.
I am sure other son this site will offer some other help.
Paul
Thanks Paul, I spoke with her a while back and more recently about the possibility of a stomach peg and she doesn't want one, I don't think she'd be well enough for one anyway. I said to her yesterday to call her MSA nurse about this because it's getting worse. Maggie has Botox injections every three months for the head drop but the last two sessions it hasn't worked 😢
Hi - sorry your friend having problems. My husband now has PEG which has made things so much easier for him. Realise not an option everyone wants - has your friend got an assigned Occupational Therapist (OT) ? They might offer some advice.
Hi, thanks for your reply. She doesn't have an assigned OT, in fact their last contact was over the phone to say " tell us what equipment you need and we'll send it " 🙄
Needing opinions or facts with MSA-C
Extremely High Temperatures
