Can't control his face muscle's

For the last week or so, usually begins at the end of the day. My husband has PSP, CBD or MSA? No one know's for sure , not even Mayo's. He started not being able to control his face muscles. He is always grimacing and looks like he is in pain. He says he isn't. He can't control his mouth, his eyes, his jaw, his chin. Basically his whole face. Has anyone experienced this?

[NannaB]

My husband is going through something similar. His started a couple of weeks ago. The left side of his face has changed. He looks as if he is sucking in the side of his mouth. He has always had bags under his eyes but the bag under his left eye has disappeared. If I ask him how he feels, he always says "fine". It will be interesting reading other replies and seeing if anyone knows why this is happening.

Nanna B

[Hidden]

Hi

One damaged area of the brain in PSP can affect the facial nerve (7th cranial) resulting in a form of facial muscle spasticity. It has been termed facial dystonia and affects all the areas you mention. Often PSP sufferers are described as wide-eyed staring and grimacing.

As we all know with PSP, the severity of such symptoms varies from person to person. When my wife eats she looks as if each mouthful is distasteful, but she is unaware of her facial expression (and indicates the food tastes good!!!). Some have described the facial movement of a numbers of PSP sufferers as "a bad smell" expression.

Note: A one sided facial palsy can be caused by a stroke, so this has to be ruled out should these symptoms appear suddenly.

(A loss of facial expression in Parkinson-like conditions is called hypomimia)

I'm sure others will express their experiences with this facial nerve damage.

Cheers

T

[Hidden in reply to Hidden]

My wife has the typical PSP face mask, in fact the shape and set of her mouth has so altered that I have taken to looking at photographs to remind me what she looked like until about two years ago. But although eighteen months ago her right eye developed a serious "droop" like the one described by others, this cleared up over a period of about six months. We assumed it was a feature of PSP that things come and go; unfortunately they are neary always replaced by something else!

[jimandsharynp in reply to Hidden]

Strelly, it took me a while to find out that Sharyn's expressions when eating have nothing much to do with the food. She makes a face and I ask if the food is ok and she always says yes. Jimbo

[SharonAB]

Dear Sluxford,

I remember 'Googling' about PSP and one of the descriptors I read about was a 'masked face'. It had no meaning til about three years ago when I could no longer immediately determine by looking at my husbands face what he was feeling. His facial muscles were contracting and tightening in a similar fashion to his legs and neck. His facial expressions did affect us when we going out (as a family of three). I recall a taxi driver refusing to take us and described my husband as "looking too angry at him". Also at a restaurant at a hotel a waitress wouldn't serve John a beer because she thought he was drunk (& we had just arrived). I thought they were events based on John's reduced mobility, and blank eye expression til our daughter (at primary school) pointed out how her school buddies told her how angry her Dad looked when he picked her up from school (We live across the road). To illustrate her point Chloe copied on what I thought was an over exaggeration - but unfortunately I don't she was that far off the mark. Now I think John's 'usual' facial expression has altered again and and is what I take to be rather neutral and bland - so now 'masked' has become a truly apt descriptor.

Regards,

Alana - Western Australia

N.B. I volunteered at the school, and one of the teachers asked me to participate in an event on providing some additional education to students on mobility restrictions and walking aids. It was with this opportunity I was able to explain how 'facial expressions' may not always mean what we think etc.. Anyway got things back on track and gave all a better understanding....

[goldcap in reply to SharonAB]

Sharon, not only are you a wonderful caregiver but a sharp mom as well. Keep up the good work! JG

[mcfly]

This happens to me during the day...

webeye.ophth.uiowa.edu/eyef...

notice how this patients left eyelid droops. That happens to me and also my forehead gets wrinkles when I am trying to keep my eyelids from closing. Also one pupil is bigger than the other when ever my eyelid droops.

My mouth is usually open slightly because I have difficulties breathing through my nose

[Heady]

My husband often has his " mask" on. It started long before we knew it was PSP. Mouth drooping, no expression in his eyes, etc. it happening a lot when tired or concentrating. If I remind him, he can take it off straight away. It was one of the markers that the consultant used to diagnose PSP.

Try and see if he can change his expression, if not, get him to the doctors, like Shrelley says it could a be a stroke. They do happening without any knowledge. We know!!!

Love Heady

[goldcap in reply to Heady]

Heady is right, we tend to assume everything is PSP. Our doctor just counseled us on this. Increased risk of stroke is an all too common side effect of many medications.

[piggyinthemiddle]

Yes, my Dad has CBD. He started off looking very angry and now, as he reaches the later stages of this horrid disease, he just has no real expression at all. His eyes look like they are out on stalks sometimes although one of them has dropped significantly (as someone else has already mentioned). He is 70 this year but looks more like he is 90.

[Keith246rk5]

Hi yes I have this problem involuntary eye movements also facecial muscles just do what they want

[carolinesimmons]

My husband has had these facial problems for months! He sometimes looks like he is scowling, sometimes in pain, sometimes bland. He also moans at times. But he is never in pain and his feelings are not reflected in his facial contractions. Even on those rare occasions when he can sing along with the music therapist, he looks as if it is all distasteful. But he actually loves these sessions - and any others where he is getting someone's undivided attention. He rarely talks but has conveyed his boredom.

[goldcap in reply to carolinesimmons]

caroline, I am so glad you brought this up! My husband is on his best behavior when he is getting undivided attention, i.e. PT, speech, doctors etc. I always say he is Mr. charming for all the other women in his life lol.

[nomansland]

WE have the same thing..it,s like the face becomes frozen as the person gets more tired it seems worst in our case,regards,our prayers are with YOU to get the strength to survive...Rollie

[Hidden]

Thank you for all your reply's. God bless to everyone. This sight helps me so much. At times I get frusterated and I start reading everyones blogs and I know we aren't alone! Thanks again, suz

[goldcap]

Sluxford, I feel for you. It took years and several specialists to diagnose my husband's PSP. First Parkinsions, to MSA than finally PSP. The big tell of PSP is eye issues. His ability to look up and down, and his peripheral vision were severely inhibited. It took a nuero-opthamologist test results to add weight to the other doctors diagnosis of PSP before they would give us a diagnosis. As for the grimacing he does that now when he has emotional incontinence (doctor's term for lack of control over emotions and inappropriate responses to situations). Parkinson has a mask like expression which he had at first. Pointed them in the wrong direction. We almost did Mayo right before he actually got a definitive diagnosis. Here's a Mayo clinic story for you: A man we met at the Colorado PSP conference in 2013 went to the Mayo clinic and they informed him after much testing that he could not have PSP as his eye movements were not affected. They gave him a tentative diagnosis of MSA. TWO WEEKS after leaving Mayo he developed eye movement problems. So go figure. Wish I could be more helpful. I have noticed many of his symptoms however, do get worse at the end of the day. They call it "sundowning" in Parkinson's patients. Usually attributed to medication wearing off at that time. But I find it happens with other disorders as well. Good luck and I hope you get a clear diagnosis soon. The not knowing is maddening. Believe me I know. Take care of yourself as well, Best JG

[jimandsharynp in reply to goldcap]

Reading about your Mayo story just enforces what I say "PSP is NOT a one-size-fits-all disease".

Jimbo

[jimandsharynp]

Facial looks on patients with these diseases get unusual expressions. That is why many times an unknowing person will think the patient is "mentally off". A wide-eyed stare with unblinking eyes can give the appearance the person is totally "out of it" when we, who know the disease, know this is somewhat standard looking. The area of the brain the Tau is affecting is the small muscle area (lips, mouth, eyes, throat, etc. etc. The bowel muscles that in normal people move things through the system are less effective causing constipation. It's all part of these diseases. Each person may have these issues to a different extent and some may not have a symptom at all. These diseases are unique to each patient and not a "one size fits all" type disease. Jimbo

[goldcap]

Jimbo,

Wise words!

JG

[patilyogendra00]

Yes! I am also experiencing this problem.

[kulasdm]

My husband experienced what you have described when he is having a facial spasm. It is similar to the eyelid spasm that will cause the eyelid to shut in a PSP patient. His neurologist recommended Botox injections which have eliminated the spasms for now.