Open Mouth with PSP

[Jibjh]

hi friends

I am new here, my husband is suffering from this horrible illness, he was diagnosed in nov 2018. Since then things are not the same, illness has taken away his eg speech , vision, swallowing , walking and so may more.

However, he woke up Sunday morning his mouth forced open, we waited all day for his mouth to return to normal but it did not. Due to this he can’t take anything orally. Poor thing can’t even have sip of water. We ended up at A+E on Monday did not have very good experience there, they tried best given him an injection but till this morning situation is the same.

I wanted to know from this group that has anyone experienced this with psp? How long it is going to take if at all for his mouth to return to normal position?

Thanks very much in advance

[Hidden]

HiJibjh! My husband has PSP. THIS HAS NEVER HAPPENED TO HIM , YET, but everyone has different symptoms. Could he have had a stroke maybe? Did they test for that? I’m so sorry this awful horrible disease has invaded your household also! Hope u find answers. That is awful! Love and hugs from Ky. USA.

[SimonandMaria]

Hi Jibjh,

just like Laurel1995, i was wondering if he hadn’t had a stroke… in PSP, if anything, muscles tend to contract and for instance mouth would be impossible to open. My wife was diagnosed PSp in 2018 and havnt seen her open the mouth for the last 20 months… cant even go to dentist to check teeth as they are closed/clenched/shut/sealed… she still has some yawning reflexes, but will yawn with closed mouth…

not sure it helps…

Simon

[Zerachiel]

Hi, many PSP sufferers have problems opening their eyes, the muscles that open the eyes are relaxed when the eyes are open but PSP causes the muscles to force them close; Botox injections are sometimes used to relax the muscles.

I am only guessing but as the mouth is also normally closed when relaxed I wonder if the same is happening with the muscles that open the mouth.

[Runner333]

Hi Jibjh, My husband has PSP and when he yawns his jaw clicks. I’m not sure if this is TMJ but he hasn’t said that he is in pain. I was wondering if foot reflexology could relieve the stiffness in your husbands jaw. I did a quick search and there was a YouTube video on how to massage the toes to help stiffness in the jaw and neck. I know it sounds crazy but I have been despite to find something that helps my husband. Luck and strength on this journey. All the best, Linda

[Banta123 in reply to Runner333]

Hi this sounds useful for my dad too, whos jaw is also stiff and doesn't use much throat muscles as now he 90% ped fed. Please could you share this video.

Appreciate your support.

X

[Runner333 in reply to Banta123]

Hope it helps!

youtu.be/Nm6LPxlYlso(Not working as expected?)

[Stephanielayell82]

Here in the US they refer to it as lock jaw. We have a muscle relaxant to rub on my loved one jaw when that happens. She is experiencing involuntary eye movement just the eyes will close, lock jaw where the mouth freezes up in different positions and her eye brows looking like they are tap dancing. There are creams or pills her to treat the symptoms sometimes they don't even work though. Good luck on your journey!

[Railfan]

Mostly associated with PSP is the mouth being closed and hard to open. when just sitting quietly, my mouth is mostly open with occasional drooling. If the A+E couldn't find anything mechanical and muscle relaxant injections didn't help, you may be in for a visit with a specialist.

I would caution against manual manipulation by yourself or well meaning friends. I have both Freezing Gate and Freezing Grip. When my fingers have been pried open, it is actually a painful feeling.

[am2015]

My Mum had the same issue very late into her illness. Initially the North was locked closed and then wife open, both have their own issues. We were not able to close her mouth, so had to ensure that she was comfortable in that position. The mouth dries very quickly, so we would use artificial sativa and also a small spray bottle to keep the mouth moist. Can't do too much as it could result in choking, so need to be very careful, a fine balance. My husband is a stroke consultant and said that the mouth opening would not be as a result of a stroke.

[Jibjh in reply to am2015]

Thank you very much for your reply, he has not had stroke that’s for sure. Yes this is a another big problem in psp journey

[Hidden]

It’s amazing that there are so many differences in symptoms with this horrid disease. You never know what the next day holds for you. And it’s not good news! I don’t mean to be or sound negative, but I’m so tired of this disease!

[littlin]

Hi, my husband also has problems with his jaw. It has now dislocated 5 times. When he yawns you can hear it click & it looks like it will dislocate again. Thankfully it hasn't stayed open & doctors have managed to put it back but it has been a painful experience for him. They were thinking of trying botox but decided it wouldn't help him.

He has difficulty opening his mouth wide to eat, drink and brush his teeth. He also does do a grinding movement side to side with his jaw which I think has weakened his muscles.

I really hope the doctors will be able to help your husband.