Hi, my husband has just been diagnosed with PSP (June 2019). We've been extremely lucky that the Occupational Health Team, Physio, Speech & Language Therapist and Parkinson's Nurse have all visited us and been extremely helpful. It's all a bit daunting at the moment, and we're very up and down. He can be particularly down as his speech is bad and he gets upset when people can't understand him. He's also suffering with choking on his food and his sense of taste has gone, which really depresses him. (There's only so many Indian meals you can have in a week!).
Anyway, we've decided to go to one of the local PSP meetings next week at Wherwell in Hampshire. It'll be good to meet other people and compare notes.
He's been prescribed Madopar (originally 50mg, but the Parkinsons Nurse upped it to 100mg). However, he doesn't notice any difference, does anyone know how this medication should help? He's been on it now for about 3 months, so think he should notice an improvement in something by now if it were going to help. Has anyone had the same experience and is there another medication that he may be able to try? We'll obviously ask these questions next time he sees his consultant, but no appointment has been arranged yet, and we don't want to keep bothering our doctor,
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SharonandRichard
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Sorry to hear of the recent diagnosis. My dad has PSP and was diagnosed just over 3 years ago so we are quite a way into living with the condition and I am sorry to say that there is no medication for PSP. The docs prescribe Parkinson's meds as it sometimes helps at the start but if it does help it wont for long. Sorry for being the bearer of bad news but we've found with PSP there is no point in beating around the bush or looking out for false hope.
The ot and speech therapist are the best ones to turn to. Get a social worker involved too. Ours have been great in getting carers in for dad and support for mum.
Ref speech frustration. We have a go talk machine where you record things onto or we use print outs of a to z, I've alsl done key words like hungry, tea, coffee, pain, sad, happy etc. so dad can point to them.
There isn't a one size fits all answer some things that work for us might not work for you. Everything is just trial and error in the world of PSP.
It takes time to adjust and come to terms with the condition. Take one day at a time, cry, get angry, shout, throw things if you have to. You dont stop feeling peeved that the person you love has this but you learn to accept it and try and make them as safe and comfortable as possible.
There will be days where you think that you wont get through this but you will. PSP makes the carers stronger because they have to be.
Here you will find answers and ways of making life easier for you both.
I have no experience of PSP other than what I have learned here. My hubby suffered from CBD which is similar in some respects.
I have seen references to getting a swallow test done, and physio exercises that might help the throat muscles. You may want to follow up on this. I expect others may have more specific detail.
Regarding speech difficulty, yes, that must be very frustrating for Richard. Your physio team, or someone here may be able to help . Even basic words and phrases on a board may ease the frustration. Do whatever makes conversation easier to keep the interaction. There may be a program that chooses specific words and phrases that may be helpful. I have no experience here but have seen one demonstrates on TV some while ago. Someone here may have used one.
One thing I’ve started doing lately regarding word findings is that I don’t rush it. In fact, I’ve started to mimic his hand gestures and it makes him smile and relax more. He’ll sigh and comment on how much he hates this disease. I don’t respond because if I do he will lose his train of thought. When I can tell that he has given up trying to find the words I start asking yes and no questions. Sometimes we can figure it out and sometimes I’ll just change the subject. He can become frustrated, but I try to make a game of it. When all else fails I’ll ask him for a hug. Seems to help 🤷♀️
Madopar is supposed to help with slow movements, stiff muscles and tremor. Ask his doctor if he can taper off and see if his movements worsen. Everything with PSP is trial and error. Sorry, that’s all I’ve got.
Thank you everyone for your replies. It helps knowing there are others out there who understand. Most people we've spoken to have never heard of it and I don't think can understand the frustrations.
Anyway, its early days for us and although we know there is no cure (at the moment, we live in hope!!), we're just taking each day as it comes.
Richard refuses to give up work and goes in just for a few hours a day when he feels able, luckily he's self employed. While he is happy to go in, it gives him something to focus on and he works with our son, who can keep an eye on him during the day. In the meantime, we've applied and been successful in getting attendance allowance. I'm waiting to get a reply back from our local council about a reduction in council tax and also we've applied for a blue badge. I think that is about all we can do financially to help us live as full a life as possible for now. I know I don't qualify for carers allowance as I receive my state pension. This is the first time in our lives we've ever had to ask for help!
Thanks again everyone for all your advice and I'll keep watching this website.
So sorry you've had to join us here, but as has already been demonstrated there is a wealth of experience her, so please keep on asking.
We found that our community nurses and OT were invaluable as they got equipment and kit delivered within 24 hours when required and CHC funding when needed.
Sadly I agree with everyone that most medications were ineffective. Chris used Rivastigmine patches daily and later Clonazepam which stopped the restless legs and gave him good quality sleep at night.
This cruel disease varies from patient to patient so it is just a case of taking it as it comes.
Hi & welcome, this site is so helpful, in sharing experiences, giving ideas & allowing you to rant. It has been a life saver for me, for as you say, no one has heard of PSP, including most medical people, so you do have to build up your own knowledge base and be prepared to get your point across to people as you & your husband are likely to know far more than any Dr you come across. Hopefully you have made contact with the PSPA and found the information on their website useful.
Do make sure you get Power of Attorney (Finance & Health) set up, this will make life easier in the future. Also get bills in joint names, so either of you can talk to people when necessary.
If quietness of speech is also a problem you can get portable microphones that can help. Mum & I used to use one in the car and it worked really well for us. She was a bit more self conscious with it out & about. Our speech therapist lent us one.
Good on your man to still want to do as much as he can, when he can.
I was diagnosed with CBD June 2017. I have been on Madopar for over a year , starting low and then increased to the same dose (100)four times a day . I was advised that it might not do anything but have found that it gives me a little more movement. Unfortunately, I suffer with constant internal shaking and it is stronger as the Madopar wears off tillI take the next dose. It will eventually have no effect.
I have been involved with the research at Cambridge and it would seem that although PSP and CBD have similar traits , PSP is hardly touched by drugs. Ask your GP about Sinemet as that was also offered to me initially. It may help for awhile to enable you both to adjust to this new life. See if you can get some counselling and keep up the exercise. There is app called Verbally which my speech therapist recommended for whenI can no longer communicate. Feel free to find things on this site that I have posted. Jayne
Welcome to the site. Medications are tricky, Madopar may not have any visible signs of helping but it may be slowing down the progress some. Of course hardly any two people react the same way to medicines and it may not be doing anything. I agree with the above recommendation about asking the doctor to reduce the dosage and see if things take a sudden turn for the worse if you are needing to find out.
My dad was on this until October, since he's been off it is balance is worse and he tumbles more , where he went and broke his nose last week .My mum says he seems stiffer as well, so we dont know if the psp is getting worse , so they've decided to go back on tablets to see if they did help as we wasn't sure as only been on them since Feb - Mar time .like you we've new to it as only got diagnosed last Feb.
My husband takes Madopar, but it doesn’t seem to help. His biggest problem is balance. He does a lot of exercises but that doesn’t seem to help either.
My mum (83) was put on Madopar (100 mg 4 x a day I think) for her PSP by her neurologist about 6 months ago (she has severe problems with mobility and speech but her understanding and awareness are still all there), she felt that it hadn't helped so the dosage was dropped but within a week she said her mobility had suffered so back on full dosage - so it looks as though it has had some positive impact, even if it is only slowing this awful disease down a bit. Have managed to get a council tax exemption for her ( a friend mentioned the possibility, I wasn't aware of it and none of the health care professionals had mentioned it which seems odd), currently trying to decide what is best for her care-wise going forward which is a very hard decision (increased homecare visits vs residential care home vs nursing home). Her speech therapist suggested an app called Claro which she has on her Ipad, she uses it if I'm there but and open it up for her, but not otherwise!
Hope that helps a bit, and wish you and your husband all the best with the battle ahead - both myself and my mum get very frustrated at times, but we still have a laugh which keeps us sane
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