Hi there. I don't often post but i read all the time. I've two questions that I hope someone may be able to answer for me.
Firstly, is muscle memory a common symptom of this horridness, ie forgetting how to eat, wash teeth, toilet etc.
Secondly although my hubby has all the choking going on whatever he manages to eat or drink, his mouth is slowly closing so very soon he won't be able to eat or drink anything as his teeth will be shut together. Is this a common symptom.
Thank you to anyone who may be able to provide me with any help. Duffers
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I think it's the symptoms of PSP unfortunately, the messages to the brain aren't working properly, making the sufferer almost shut down if you know what I mean? Keith often clamps his teeth together and won't open his mouth especially when I'm brushing his teeth, I have a struggle to get the brush out of his mouth sometimes!
I'm not sure about the muscle memory though, I don't think they forget how to do things, I think it's all to do with messages not getting through!
I've not really helped you have I, it's an awful, cruel disease on the sufferer and the people who love them, heart breaking 😔
Duffers, I love your name. Both symptoms you have described have happened to my husband. He also clenches his teeth now and is PEG fed. He does, however, still manage to take his tablets with yoghurt via is mouth and has never clenched his teeth when a spoon is near his lips. Hopefully your hubby will be the same. When I try and clean his teeth sometimes his teeth and lips are in a vice like grip so now I wait to clean them until his mouth is wide open when he is nearly asleep.
Hi Duffers, it does seem as if they have forgotten how to do most things in life, but it's like Pat has said, the messages are just not getting through. Which is why some days they can do things and others not. Or should I say, it feels as if they can only do things, when it suits them!!! That's one reason why this evil disease is SO, SO, frustrating and impossible to cope with.
At the moment, we haven't got the clenching of the teeth, it's the opposite, he can't close his mouth, so food is constantly falling out. Dog thinks it's great, his bowels have never worked so well, His gout has gone, brilliant blood pressure!!!
Thank you Patriciapmr and NannaB for your helpful replies. It's all a bummer but it does help to know that these things are all part and parcel of this ever changing disease.
By the way, I've just had a letter from a Brenda persaud, head of research and development at the central London community health care NHS trust about a research study into parkinsons and the genetic causes of it, asking if hubby would like to be involved but I'm wondering if they know he's got PSP.
I think a phone call on Monday to find out. It involves questionnaires, a clinical interview and either saliva or blood tests. Has anyone else heard of this. Duffers
My husband to a T! I tried to rescue him from a fall last night; had to take toothbrush out, and he could not open his mouth! No wonder he can't say some words !
The other night I asked him why it was taking him so long to poop! "I can't remember how." was his answer!!!! It didn't help that he seemed constipated!
So Yes I believe muscle memory or 'better' yet, losing executive functioning (how to solve problems...opening mouth, brushing teeth) is very much a part of this horrid disease!
Remedies...? no remedies...maybe working with and or around problem....When he first forgot how to use toothbrush , I gave him an electric one...it works well if I don't try to pull it out of his mouth....same like a shaver....we are working on his walking, and wheelchair needs right now...I still wan t him to walk as much as possible....but he is 'forgetting' if you will; knees collapse, feet freeze....frustration happens...With Parkinsons Disease they have noted that the more the muscle is engaged the less atrophy and thogh I am not sure this helps the PSP patient...it sure can't hurt , eh?
Goodluck ....am sharing everything your'e going through
Regarding toilet business ger has laxido, think a bulking agent, not too much help so I started him on lactolose to oil the path, so to speak, and asked for on prescription. Ger gets up and down 3 or 4 times when he goes and usually it comes away when he is standing. Does my head in lol.
Electric toothbrush but a struggle to put in mouth. Happy times.
Hi Duffers sorry to be late to the story. My wife has been diagnosed PSP for over 5 yr. Have been through most of the mouth and swallowing issues. Teeth cleaning always a problem clamping teeth shut on toothbrush or finger tip only releasing in her own time. As everyone said the issues you have noted are common symptoms for both PSP/CBD. If you have not already contact PSPA who will be able to provide information and support group said.
On another point Laxido is not a general purpose laxative it is a stool softener helps lower bowel but does not stimulate the whole track if your dad is still having constipation ask GP for "Docusate" which should clear constipation less side effects than Senna.
Thank you for the info. I will ask about docusate. I've also started ger on lactolose. Not sure if between them all they will help him, definitely won't be helping me I'm sure lol but one has to do ones best in the face of adversity, sometimes maybe
Hi Duffers. The issues described are no doubt PSP related, as others in this forum have already said. This disease is indiscriminate and sporadic. No symptom manifests itself the same in the PSP patient even though they're all similar. Muscle memory, along with procedural memory and motor learning take place in the cerebellum. This is also associated with long term memory and not normally affected by PSP. You need to be very careful to ensure that husband does not choke... this could lead to aspirated pneumonia. There are a number of strategies you can use. You'll get some good and relevant advice from others who post here.
when you speak of muscle memory I immediately think of something else . My wife has had PSP for about 4 yrs ,she can barely walk but still tries ...We had a right leg brace made (here right foot was way turned out ) she walked totally on the outside of her foot ...thus creating far less balance and stability .When she wears the brace her foot is ALMOST flat and her balance is way better ....how-ever when I take the brace off her foot goes even farther on its side ...like the disease is saying "if you mess with me I will mess with you....Thats my take on muscle memory She wears it about 2 hrs a day ....The neurologist says this is common with PSP ....muscles fight any change ......hope you figure out the other symptoms...jeff
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