my husband diagnosed in February with psp after thinking Parkinsons since 2016, He excessively sleeps not getting up until at least mid day, sweats excessively now is confused putting toothpaste on a comb, forgetting where he was heading. Just doing things with difficulty, feel so alone anyone else got these symptoms? Don’t know whether I should force him up or leave to sleep, really low blood pressure so at least in bed I know he is safe.
Any advice welcome
🤗
Dear Epace, I’m very sorry for what you and your husband are going through. It’s a hard path, and since the disease affects people so variably it can be difficult to predict how it will progress or what, if any, action you should take.
I’d be inclined to let him sleep if he can. My guy for a long time couldn’t sleep for more than a couple of hours at night, and the exhaustion was awful for us both. I’d try to use what quiet time you have to get rest for yourself.
The confusion doesn’t happen to everyone. It might be worth talking to his doctor specifically about that. There may be a cause separate from PSP, and worth checking
Please keep in touch; you’re not alone.
The question of night sweats is one that has come up in several of the forums on this site. I did a fast scan, and many people link it to various medications. I don’t have an answer for you, but you might have a look by way of the search function to see if there’s any relevant advice.
I had a friend who swore by sage tea for the sweats. She said it worked, but that she always smelled like the Christmas turkey.
many thanks - too funny 😂 but will try anything xx
Hi Epace!
Only some patients, type PSP-P (PSP-Parkinsonism) and during a variable time on the early stages (4 to 8 years), improve their bradykinesia and rigidity by taking Carbidopa/Levadopa/Sinemet. After those years in which Levodopa works, the disease generally evolves to a type of PSP, frequently RS, CBD,...).
Our case was the PSP-RS type and the symptoms of sweating and extreme fatigue did not occur.
easterncedar's suggestions seems correct to me.
However if you didn't feel any difference using PD medicines then maybe it was not working for you and suffer from other variants of PSP.
“daddyt point out on 2022-07: It's important to note these are two different proteins involved with PD and PSP: Alpha-synuclein – PD and Tau - PSP. Levodopa Cardopa (Sinemet) has shown to have reduced the symptoms of bradykinesia in about 30-40% of PSP patients, depending on the variant. Its efficacy can lessen over time. My MDS has told me that a number of her patients went off the drug, then had better results the second time around. I have been on Sinemet for eight years and still benefit from its use alongside a daily exercise routine“.
Lou T. has studied publications on parkinsonism and synthesized studies related to substances that could slow the progressive symptoms linked to PD and other related neurodegenerative diseases. It is interesting to read this document:
"Supplements we use to Try to Slow Parkinson's Progression (and other neurodegenerative disorders)" (2018-03-11)
smartpatients.com/conversat...
On most of PSP types the only thing you can do is counteract the symptoms…....but, despite how hard this disease is for everyone, it is posible to achieve a reasonable quality of life, even interesting.
On paper (2021-07-02) (whose reading I recommend):
pn.bmj.com/content/practneu...
Dr.James B Rowe, Dr.Negin Holland and Dr.Timothy Rittman.University of Cambridge Department of Clinical Neurosciences, highlight:
“For many cognitive and behavioural symptoms, support, tolerance and environmental measures are more effective—and safer—than medication. Experience (anecdote) and cohort studies dominate the evidence base, over randomised, controlled clinical trials. So, focus on medications that aim to reduce those symptoms that trouble the patient, or place them at risk. The following sections are a guide, not a substitute for clinical judgement. Ask the patient which of all the problems caused by PSP actually bothers them—the answers may surprise you! PSP robs people of so many abilities and aspirations, but professionals often unwittingly remove the patients’ autonomy. Patient-centred treatment is more satisfying, more likely to succeed and better for risk-benefit decisions.”
I am sending a note to you by internal chat.
Hug and luck.
Luis
Hello,
I too am sorry you are struggling with the symptoms of this awful disease. My husband is in year 6 of PSP. He can't tolerate the heat so we keep our AC set at 71 or 72 and have fans running all the time. I cover him with a light lap blanket so he can cover when cold and remove it when warm. This seems to help him a lot. Also this is a brain disease so there is inflammation and problems in the brain caused by the abnormal Tau tangles in there. So please, let him sleep all he can. During sleep the brain is trying to heal itself and clear all of the toxins. Also like others have said, often PSP patients develop sleeping problems. So it's a blessing you are not dealing with that, at least right now because then you would be even more exhausted. If that's even possible. My guy sleeps 14 hours a night and I'm loving that. It is the only thing that has saved me as I am his sole caregiver with no family or friends nearby for help. Confusion can be caused by a UTI. Always be sure you don't have that going on when confusion starts. Cloudy, foul smelling urine is a good indicator. Collect a specimen in a glass jar so you can see it's clarity. Hope this helps you. Stay strong. This is a very hard journey but we are always here to help you. ❤️
Thank you so much, my husband diagnosed in feb but wrongly diagnosed in 2016 with parkinsons, does this mean he had it got 7 years and now progressively getting worse? I’m now happy to let him sleep you have reassured me nothing wrong with that. i have haded urine n blood samples in so hopefully something there.
You too stay strong , its a horrible road we are on!!
Thank you xx
Hi,
To answer your question about has he had this 7 years...I'm not a Dr but my opinion is yes. Many PSP patients are first diagnosed with Parkinson's because the symptoms are very similar in the beginning. Plus some people with PSP have the PSP-P variant. This progresses more slowly than the classic, more common PSP-R form of the disease. You can research the PSP variants for more information on them. My husband had personality changes and anger and behavioral problems for 3 years before the falls and dizziness started. When I asked our neurologist about this he said often the disease is present for several years before the falls and physical symptoms appear. It's hard to judge what stage they're in based on years of the disease because of all of these factors.
But to clarify your question above, the disease is progressive, so yes, even if it's very, very slowly, they are always progressively getting worse. Best advice I can give is be ready to adapt to the ever changing problems. Your resilience and fortitude will be tested with this disease. Try to have as much fun as you can together. Tease him, say stupid and outrageous things to make him laugh, change the lyrics to songs you sing to him to make him laugh. Anything to have some laughs together, after all laughter is the best medicine, especially with this disease. ❤️
thank you - sounds a plan 💕
My lovely mum is deteriorating quickly. Any guidance appreciated.
Some good news
Need to vent
John
