Partner with PSP diagnosed 2022

[martinjanetj123]

Hi, I'm Jan and I'm living and caring for my lovely partner who has been struggling with PSP for a few years though diagnosis came only last Feb officially.

His mother also had PSP which makes our lives even more difficult as were all too aware of the future.

We live in Stockport and TBH have had little assistance. Some occupational therapist visits and a bar fitted on the stairs.

Currently we seem to be at the stage where walking/vision and swallowing are all deteriorating but still be are able to get out and even go away.

My partner is 66, and is still fairly positive about stuff, though not the person he once was.

Id like to connect other people living with PSP or carers of PSP sufferers in the Gtr Manchester area, to share our worries and knowledge.

We struggle with not really knowing the timeline for the illness, making planning longer than 3 months difficult.

Anyone who fancies a chat and maybe a meetup ?

[AnneandChris]

Hi Janet

So sorry you've got a double whammy. PSP is a cruel disease and its progression varies from one person to another and it can be unpredictable too with falls coming from nowhere.

Have you contacted the PSP Association? They have help groups across the country and I would think that there will be one in Greater Manchester. They are also have a wealth of information both for you but also for any professionals who may not know about PSP.

Our journey ended in 2019 but you will find great support here from others like you who are currently dealing with PSP.

Hope this helps, keep on keeping on.

Anne

[martinjanetj123 in reply to AnneandChris]

Thanks Anne for taking time to reply I appreciate it, I'm sorry you have also had to suffer with PSP in your family, I will reach out to the PSP Association. Take care

[timbowPSP]

Hello Janet, PSP is such a challenge in so many ways. So welcome here! I am 81, diagnosis 5 yrs ago, and still chugging along, with lots help from my partner. From the start, and without help from the experts I developed my own protocols based on personal experience (I used to be a hands-on therapist: Bowen/NST). Targeted exercise, diet, supplements, and therapies. I've written it all up as 3-A4 pages, and happy to send to you if you like. Too much for this channel, so best by email. Send me your email if you 'dare', and I will send it. Please Stay Positive = PSP.

V best to both of you. TimbowPSP

[Vraic]

Hi Janet, I'm also in the NW (Chorley). My husband Mark was diagnosed aged 56 in 2021 and is now wheelchair dependent with speech, eyesight and swallowing issues. Getting help is a minefield. The only advice I would give is to get on the help trail as soon as you can - the way this sod of a disease can move means by the time you get help, you'll need it. All the best to you & your husband.