husband diagnosed psp

[Buttons15]

good afternoon

My husband starting have problems with swallowing from February 2023 following a choking incident in a restaurant

Had a few falls previously and has a history of speech impairment from childhood.

he lost his joy in life and wasn’t wanting to engage in anything

he was admitted to hospital as he lost a huge amount of weight and he was advised to take protein drinks and chin dip etc on eating as his food was not going into his stomach

he complained of lack of dexterity but again we put this down to vibration white finger which he was diagnosed years previously from working with tools

He had super hypersensitivity to light and felt he was going blind and was informed he was suffering from dry eyes by the optician

he continued to have tests and was finally given the answer PSP and advised to look up online

he has since seen a neurologist last week who has confirmed the diagnosis

it is a lot to process he has since had multiple fails and shuffles when walking

constantly has saliva , difficulty in holding cutlery and I find it hard to hear as he speaks in whispers

we have appointments arranged for physio and speech and language and are grateful for the help

It would be amazing if anyone could offer advice moving forward he is becoming forgetful

it’s more to do with communication as he has dyslexia also so struggles with words

Thank you

[easterncedar]

Hello, Buttons. I’m sorry you are dealing with so many symptoms at once. It’s a very hard road. I don’t have much general advice, except perhaps try to protect him from falling as much as you can. Clear away things you wish to protect, put railing or grips where you imagine they might be useful. We had good luck with physiotherapy, especially the LSVT Big program.

Ask anything here, and use the archives for specific questions. There’s a lot of good information and support to be had. The saliva problem can be addressed. Atropine eyedrops under the tongue worked for my guy for a long time. There are other medicines.

Take care of yourself as much as you can. That’s really important, but is very hard to do and very often gets shuffled to the bottom of the priorities.

Hang on; we are here for you.

Peace, Easterncedar

[Bergenser]

So sorry to hear you and your husband are facing this disease. Hopefully getting the diagnosis makes it easier to access the right information and support. It can be overwhelming with everything you read, so be selective. You can't predict too far ahead so you might just focus on the things you can do something about now. Be kind to yourself. Your husband is going to need a lot more help and care than you can give so make sure you accept offers of help - and don't be afraid to ask.

You're not alone and there is always people in this forum who understand what you are going through. Hope and hugs for the journey 🌻🫂

[Buttons15 in reply to Bergenser]

Thank you

For your kind words and advice

It is a great sense of relief having the diagnosis

It’s hard not to try and read everything and not get overwhelmed or overloaded but I sm going to listen from great advice from this amazing forum when struggling or just wanting someone to listen

I can’t thank everyone enough knowing that we are not alone . Love and hugs 🥰

[Topcatwoof]

Hello Buttons 15, I have just read your letter and it sounds like you're describing my husband who is 77 and I'm 74 this year. He was diagnosed with psp 1year ago after 3years of guess work from the Neurologist who is lovely. . As far as physio is concerned I've not found it helpful. His walking is poor and uses a 4 wheeled walker in doors and to get to the car. There are days when I don't want to look after him anymore but they pass and I get on with it one day at a time. Lol 😆. There's some good advice from others in thier replies. Especially remembering to to try to pace yourself which might mean not doing some chores that can wait a while to be done. .... if you are reading this easterncedar, what is LSVT Big program please, I've not heard of it. ., Buttons, I hope you're managing enough, it's certainly a learning and adapting experience. God bless in the meantime. X

[autex2000]

Hello Buttons, Very sorry to hear of your problems, I have just lost my wife with almost identical problems, you need to get all the help you can as you plough your way through this terrible desase, the salivation was a problem but the doctor suggested Botox which she gave every three months. in either side at the back of the ear, and later for a nose that kept running they recommended the travel sickness patch which lasts for 4 days, and was very effective, I was fortunate that we were able to get assistance in the care, try and make sure you get as much assistance as you can you will need it later. Her falling seemed to take care of itself as she became less mobile and we encouraged and assisted her to walk, she lost interest in most things in the latter stages, the TV was at least soothing for her. If he follows the pattern of my wife and others you will probably have to feed him as control of the hands gets more problematical, she complained that she was always tired. The SALT people will probably recommend soft foods to stop him choking . I have noticed from all the correspondents that this disease seems to affect people in very different ways and no 2 are identical. Try & take care of yourself though, I found that it eventually had a debilitating affect on me, and although my wife passed nearly three months ago I am still not back to normal. I wish you very best in dealing with this terrible disease,which I found most of the medical people in our area had never heard of.

[Diggerandsam]

hi buttons, I see you’re in the UK. So am I. There seems to be little here, I find. Came across a website for PSP in Australia the other day which was quite good. I had a stroke five years ago which left me right side paralysed. Worked hard and by month twelves could do most things for myself, albeit slowly. I could shower, toilet, dress myself. I could go up and down stairs. I used to crochet a lot. Making meals and drinks was no problem. I could even carry a cuppa, walking without a stick on short distances around the house. Then I started going backwards. Even with increased exercise I continued to deteriorate. About three years ago I spoke to my GP. She commented “we’re all getting old “! Fast forward a couple of years, I had an OT appointed. We exercised but she obviously realised that I was deteriorating. TWO approaches to the GP practice resulted in an appointment with a Neurologist. After about five minutes and a short set of tests, she diagnosed PSP. What a relief: I was not going mad! The result of the double whammy, stroke plus PSP, is that I cannot walk, go to the toilet, obviously, wash or dress myself - can’t even do my teeth - or get into or out of bed without assistance. I now have a stairlift and a hoist has just been delivered today. Fortunately I have care 30 hours a week which covers mornings and nights, plus a couple of daytime visits for toiletting, meals and drinks. My life now consists of sitting in a chair and watching tv all day! Oh well, I used to berate myself for life style choices being responsible for the stroke, but this PSP thing seems not to be anything that could be avoided. Please - don’t burst my bubble!