The last two weeks I have noticed a change in my husband's face and tongue. It is almost like his face is in a constant grimace and one side seems saggy. He can still move it around when I ask him to smile or frown etc. He says it feels different.
Also, his tongue and speech changed around the same time as his face. His tongue seems to roll around and his speech is slurring more and is softer. Again, he says his tongue feels funny but not numb or painful.
I have informed his doctor and she will see him next week. I was just wondering if this is another one of the parkinsonisms or symptoms of this horrible disease.
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Gingerw3
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Hi Ginger: We haven't experienced this sympptom but I saw some Google search responses on "tongue dystonia" related to neurodegeration and other neural problems. There's also a historic string here called Protrusion of The Tongue by Jo75 about 5 years ago that confirms this sounds like a PSP symptom.....
Good luck with your hubby: It's always so jolting to move to a new symptom and stage..Hugs to you. XXX
Communication: There are magnetic letters of Scrabble (20 x 20mm; if they are bigger, that's better). We put the letters of the alphabet in a metal tray (could be one from the oven) well illuminated and placed at eye level. She points to the letters and another person writes on a blackboard the letters that she indicated. You can also prepare "communication panels" with the alphabet and some pictograms that patient can be marked with a pointer. Up to the present time it is the best system we could find. To say yes or no she uses now the fist and the thumb finger.
The physiotherapists have speech therapy exercises and exercises of mouth and ocular muscles.
•We have seen that laughter, stimulation with an electric toothbrush of the muscles around the mouth (inside and outside) and a good hydration (moisturizers for skin and liquids by mouth) help to maintain the face muscles in good shape.
•Without any scientific basis, only through observation of a few neurological diseases like PSP, I have the impression that a specific program of intense gymnastics can slow down the disease progression in a significant way and is more effective the earlier the disease is detected.
In the HealthUnlocked chat I have found many references that support this observation.
When Bob had his MRI in January (for the confirmation of his PSP), the neurologist also mentioned that Bob had had a stroke. We were not aware of that. Could that be a possibility?
My husbands tongue will sometimes not move. This causes his speech to be slurred and very hard to understand. For him, it is a symptom of PSP. Goes along with not being able to swallow and drooling. His tongue doesn't hurt, just doesn't move. His face, or cheek will also have muscle spasms. Neither of these symptoms have been permanent yet. I thought too it might be a TIA or focal seizure, but apparently for him it isn't.
The doctor is coming to see him on Monday. The kids and I saw him yesterday and we just can't decide. I do have the thoughts of stroke also, but I have seen stroke victims and he just doesn't look like that. It is more like his face has changed not that it is paralyzed. When I tell him to make big smiles or frowns, all the muscles work. The ST saw him and gave him more exercises for his tongue. I kinda think it is all a weakness of the face and tongue muscles if that is possible.
Update: the docs think it is just a progression of the disease. The speech therapist said that as fast as this seems to be progressing, we should start letter board training. Anyone has experience with that?
OK: I typed in "Communication Devices" in the Search window and found the following strings: (Just type the string name into the search window and it should bring up that string:
Communication Devices by catherine_h
My\"digital"\ communication device by LuisRodicioRodicio
Speaking by Davepalmer
Speech Aid by hubetsy
Apps by Heady
Good luck!! ...if you run out of ideas there is a good string on apps and devices for speech on the SmartPatients website for PSP & CBD...
Hi Ginger: There have been strings of posts on communication for non-speaking PSP & CBD patients several times on this site. Some of them within the last 6 months. (If I leave this page to look for them, I'll lose my post - but I'll look after this.)
Sad that it's happening to your husband, but at least it's all one thing - bloody old PSP...
chin up - stay strong!
Anne G.
The same thing happened for me 2 years ago. It was severe and I was taken to hospital and diagnosed as schizophrenia. Still I,'m treated for it. I was exhausted at the time. Couldn't move around. The doctor told me it was an attack. And, to be careful not to get it again.It a nervous breakdown.
update: the symptoms started to get better about 6 weeks or so after they started. He is now back to slurred speech only some of the time and his face seems about 90% normal. The doctors best guess is that it was some sort of bells palsy episode or a medication side effect. At least it passed...
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Are you a patient or a caregiver? Either way, gosh, you have had a lot to deal with..yikes!
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