Fighting snoring, swallowing etc....

[loustalet]

My wife diagnosed with PSP for several years has all sort of problems associated with a loss of muscular control for respiration, elocution, swallowing etc...She is also more and more often biting her tongue which may cause severe pains.

I came across a device, the Mandibular Advancement Splint (MAS), that is supposed to solve part of this problems and is used primarily to combat apnee but is potentially useful for other applications.

This device is described in: en.wikipedia.org/wiki/Mandi...

Has anyone involved with PSP got any experience with such a device?

Has anyone involved with PSP experienced similar problems and tested any solution?

[NannaB]

I think the things you describe are very common in those living with PSP.  I've just looked up the splint. I'd never heard of it.  I don't think I would have used it on my husband as he has such a strong clamping action when anything goes near his mouth that I'd worry he would break his teeth.  I use a suction machine for saliva and he has managed to break 2 suction tubes, 3 electric toothbrushes and he bit the dentist and wouldn't let go.

I'd be interested in hearing if others have used anything like this. Thanks for posting, it's good to know what is available.

X

[ketchupman]

I didn't know that is what they are calling it now.   I've had pretty bad sleep apnea for the past 20 years.  Struggled for the longest time using a CPAP.   I actually had this dental applicance about 15 years ago.  Cost me over $2000 US.  Didn't seem to do a bit of good for me.  I even wore it during an overnight sleep study and was still having apneas.  I've finally mastered the CPAP and no longer an issue using.   But I've also lost about 85 pounds in the past year, which has improved my apneas and now my pressure setting is only 11.  It used to be 20.

As for my wife, who has PSP, she also has a mild apnea.  But she refused to wear a CPAP.   I had her tested again last year, and they didn't think she needed it.   Because she has a PEG feeding tube and I administer the feed at night via an IV machine, I keep her head elevated in a hospital bed to prevent issues if she regurgitated.   I think the elevation of the head helps minimizes apneas as well. 

And yes, she loves to bite down.  She's chipped her front teeth from me either brushing her teeth with an electric toothbrush or from the yaunker used with her suction machine.   She's also bit her dentist.   I saw a recent post suggesting the use of a waterpik.  Probably a good idea, as oral hygiene is important.   I have found using the foam swabs along with a mouthwash called "Toothette" is great.  It contains peroxide and it really cleans out the crud on her teeth and on her lips.

Ketchupman