My husbands symptoms seem to be getting worse at an alarming rate. His new neurologist questions thae diagnosis and referring us to Mayo Clinic. He can not getup from his rising chair alone, barely speaks , is incontinent , cannot get into bed, and does not even move once in bed. Our biggest problem is getting him on the toilet. He is so rigid that he has a hard time bending, therefore it takes him a long time to be able to sit. It is so frustrating for him.
Also ,is this common with either PSP or CBD.
Thanks
Karyn
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Karynleitner
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Thanks,, my husband tends to always lean backwards and has trouble bending forwArd and bending his knees. It is So frustrating for him. His inability to bend has occasionally forced him to sit slouched in a chair or caused him to slide off of a chair. His first symptoms were slight and began just over 2 years ago. This progression just seems too fast. His current movement specialist feels it must be caused by depression. Although , I understand the huge part depression can play, I am confident there is more going on.
My husband has CBD and, apart from the incontinence, you have described his symptoms. On top of which he has been registered as blind and is finding it increasingly difficult not to choke when swallowing liquids and some food.
Margaret, may I ask how long your husband has had this disease. My husband rarely chokes or has problems with swallowing. I'm wondering if that will come next.
Hi Karyn. It is probably about 3 and a half years but as you know, it is difficult to pinpoint. We have been thickening liquids for a few months but we are now having to make them a little bit thicker in order to stop him choking. Certain food also now make him choke. Your Speech Therapist should provide you with a leaflet explaining this. Don't forget, however, that no 2 people with this disease have it in the same timeline so try not to worry too much and take each day as it comes. You will make the changes when you see the need. Take care.
Very common for PSP. Not sure about all the traits for CBD. They seem to have more issues with their limbs. Toilet issues were always a problem for my wife. She would tend to flop down as she couldn't slowly lower herself onto the toilet. So we had several broken toilet seats and she broke one toilet tank at a friend's house (what a disaster). PSP'rs have major eye issues: can't keep both eyes open, sensitive to light, eyes water excessively, seldom blink. Bending is an issue too, but if they do try to bend, they will often topple over due to their poor balance. So best not to bend forward. And of course the soft voice is leading up to the swallow issues which will lead to more choking and coughing while eating and drinking. Anytime foreign substances like food and drink or even your own saliva gets down into your lungs, it can lead to an infection which leads to aspiration pneumonia, which is the leading cause of death for PSP patients.
This is one mean disease. I continue to pray for a cure so others don't have to go through what many on this forum have gone through. God bless.
Ketchupman
Some consultants say that this stiffness and rigidity is a side effect of sinemet and should not be given. Once started and these symptoms have started even if you then stop the sinemet the symptoms are not reversible. This drug is really mainly used for Parkinson's. Check it out on line. I wish my father had never been started on the drug. It was harmful and certainly not helpful. My father definitely had PSP as proven by brain biopsy after death.
The description fits my husband exactly. He has recently developed this symptom despite not having Sinemet for more than 2 years now. It takes all my strength to prevent him scraping his back down the toilet lid as he gradually slides down almost without bending. He also freezes partway sometimes. It seems much worse in the evenings.
I'm really sorry to hear about your husband and I must say they sound exactly like my husband. He can't do anything for himself now and is incontinent now too. When he's in bed he can't move and every morning has really deep bad pressure marks on his back.
My husband also has a terrible problem getting down on the toilet. I was having to push him down while at the same time trying to hold him to keep him from flopping onto the seat and hurting himself.
We finally found a powered toilet lift and it has helped tremendously..we bought ours from liftseat.com. I know the majority of people on here are from the UK and I bought this in the US, but maybe you can find something similar there. If you go on the website, make sure you go to the "home/after care" tab.
Hi Karyn, sounds just like my brother except he has been in a wheel chair for sometime now and yes the toilet is a big thing he can hardly sit because he is so ridgit to he has really been progressing since December, how long ago was your husband been diagnosed. Nettie
My husband was diagnosed 15 months ago, and since the first of this year his symptoms, too, have progressed rapidly. It seems like every couple of weeks there's something new or a worsened symptom. Freezing is the newest and rigidity is worse. It will be interesting to hear what Mayo has to say.
Thank you for your reply. My husband has still not been formally diagnosed by his movement specialist, although two other neurologists have made the diagnosis. He said it is hard to speak, takes forever to get a one word answer from him, yet she voice is still good when he does say something. This is just all sad, but the wonderful people on the site are very comforting and motivating. The give us strength.
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