hello, this is my first post.
My husband aged 61 was diagnosed with PSP last October. We’d never heard of it but it will become all consuming. He is falling, choking and is hard to understand due to lack of volume and losing the right words - par for the course in other words. I’m trying to learn how much help to offer without removing what independence he still has. We are in South Hams, are there any others around who might like occasional chats?
Hi Birdbag, whilst you wait for Devon friends I thought I would say hello from the next county Dorset. We live in Bridport. My husband is 64 and was diagnosed 2 years ago. Starting with eye issues - double /blurred vision and frequent falls backwards things have changed over the 2 yrs with poor mobility- went from walking 3 miles easily to half that, to stick and now uses a walker inside and out and some hard falls especially in tight spaces and when getting up / sitting down. Cognition issues and apathy evident and struggles with spacial awareness and dexterity. Like you I am trying to ensure a level of independence, I let him shower, dress, get breakfast but help when struggling with dressing etc. At diagnosis my husband switched off and wanted me to do everything so I pushed him to do what he could. Gradually what he can do is less so I do more and pretty much do, arrange and manage everything except his morning and bedtime routines although I keep a close eye in case help required. I'm trying with the use it or lose it approach but it does change as times go by. Without encouragement he would sit in chair and watch TV all day so I have (with his agreement) organised activities on some days through the week. Eg a 2 hr slot at a community allotment group - a little potting and much twa and cake, a day at a day centre - group activities, games, visits out and lunch and I e gaged with a care Co for a male carer to come once a week for companionship - the go for a slow walk, he shaves my husband , they do some exercises and play scrabble. I git this suggestion from another member of this group and I'm so glad as we are building a relationship so we can increase hours and use them as future needs dictate. I also try and arrange trips out for us, lunch coffees, local sites etc but the other 3 activities a week give me a break from being on high alert and gets him used to being with others. I wasn't sure he would like these activities but I think he feels safe and amongst like minded people and says he does enjoy. I hope this info is useful although I appreciate everyone's symptoms are are different mix at different times. Whilst I am not in the same county I'm not too far so if you want to chat further do let me know kr Millidog
what a wonderful answer! Thanks so much. Sounds so familiar - I would be subjected to endless ‘repair shop’ and ‘big bang theory’ reruns without some pushing to do other stuff. Husband can still walk 4 miles but 5 nearly wiped him out when we did it as a sponsored event for RNLI last month. Apathy was one of the main things that led to diagnosis, he couldn’t enthuse about our newfound retirement freedom or engage with my activities let alone devise any of his own. Your carer advice is spot on. I’ve been wondering how to achieve just that. We are holidaying frantically while we can but in June when we calm down a bit I will try to find someone. The village is being very supportive and he really enjoys activities with the other blokes (yes, that’s the best description!) even though he doesn’t join in the banter he loves to hear it from trusted friends. We’re off again tomorrow but I’d love a natter sometime when we get back late May. Thanks for the offer. Best wishes Jx
Hi Millidog, what a great reply. I have recently joined this group as my husband, age 71, has been upgraded from Parkinsons to PSP this year. We live near Dorchester.
Like you, we keep active by going for 2 mile walks, outings and lunches.
Would you like to meet? I don't know anyone else who has any experience of this awful diseases apart from our nurse support.
Well done for being so positive.
Catrax
Hi Birdbag, we live in South Hams, my hubby who is 65 was diagnosed 5 years ago. Very happy to catch up with you both for a chat 
hello QNCS, thanks so much. That would be great. We are off to Bristol today for a Jet2 flight at sparrow’s fart on Thursday. I’ll be in touch on our return if I may. Thanks again. Jx
hello again. I Hope you’re enjoying this glorious weather ! We’re back from Malta - which was a success, if tiring, but now husband has started to fall almost daily. I suppose it was inevitable but it seemed a very sudden transition. We are in Frogmore just outside Kingsbridge, and you?
Juliette
hello again. I Hope you’re enjoying this glorious weather ! We’re back from Malta - which was a success, if tiring, but now husband has started to fall almost daily. I suppose it was inevitable but it seemed a very sudden transition. We are in Frogmore just outside Kingsbridge, and you?
Juliette
Hi Juliette,
Glad to hear you had a nice holiday, it may be that he is tired form all the effort he needed to make whilst on holiday, I do find that PSP fluctuates so much, every day is very different. We live near Sparkwell.
Will message you privately and maybe you would like to meet up or speak over the phone
Hi Birdbag, I fully appreciate the difficulties you are facing, my wife had PSP. Have you registered with the PSP Association? (pspassociation.org.uk). They are currently putting in place Link Volunteers around the UK. These are experienced with PSP/CBD and where possible will visit your home to help address your particular concerns and where to go for support in your area
thanks David, yes have joined PSPA and they are excellent. In fact all support (OT, SLT and GP) is great. We are very lucky with that. Just need to find a way to make life manageable in the longer term.
Hi. Also a South Hams PSP ‘member’. My wife diagnosed in 2019 after a year or two of symptoms. I’m her ft carer but we do have about 15hrs/wk private help (mostly to give me a break). Now only walking short distances with my support, virtually no speech, poor eye movement, slow responses, losing swallow (we are about to have PEG fitted) - classic PSP symptoms.
We’ve been taking part in a drug trial for the last 2 years based at St George’s in London. Hard to say whether it’s helped or not, but it was only ever going to slow the progression rather than stop or reverse it.
We’re plugged into some good support services locally (particularly a Parkinson’s Nurse Specialist who has good experience of PSP) and I’m happy to chat about these or anything else (TEP forms, advance statements, Power of Attorney etc).
Have a good trip. Carpe diem, as they say!!
hello again leygonie, we’re back from holiday and husband has now started falling almost daily. We are in Frogmore, near Kingsbridge, are you close enough for a coffee?
Juliette
Hi Juliette
We're based in Dartington. Were you thinking of us all meeting up (in which case it would need to be at our home as my wife (Kay) is fairly restriced in where she can go), or if it's just me then a coffee in Totnes or Kingsbridge would be possible. I have a couple of sessions each week when carers look after Kay and I am free to be elsewhere.
Or we could just email / WhatsApp if that's easier.
Best wishes
Stephen
Hi I am in east Devon and my father in law has PSP for at least 3 years with diagnosed but probably 5 years before diagnosis. Hear if you would like to chat.
Hi Birdbag!
I am sorry that PSP has entered your lives.
By internal Chat I have sent you my email and the practical information that I can send you by email.
Hug, luck and courage.
Luis
sorry o haven’t worked out how to do internal chat to one person - can you help?
1) On the first line of this page the word "chat" appears.
"Click" the mouse on "chat".
2) A new screen will appear and on the right side the members of the HeathUnlocked chat who have sent you an internal message.
3) A small abstract will appear with my reference "Luis Rodicio Rodicio".
"Click" the mouse on my reference and the message I sent you will appear.
4) At the end of my message gives you the opportunity to answer it.
5) In my message you will find my email for PSP, which you can use so that I can send you without any charge, all the information I have.
Greetings
Hug and luck.
Luis
I began seeing my neurologist in 2019, aged 62, and was officially diagnosed with PD. I soon began falling, which in 2021, resulted in a couple of nights in hospital. The good thing about this was that I was introduced to my Parkinson’s nurse. It was in 2022 when I was RE-diagnosed with PSP. Also last year, my PD nurse wondered if I would like to attend a PSP group. Then she asked if I would like to begin that group as, actually, there was no official group in the area. She furnished me with a couple of contacts and we have met 4 times so far. The meetings are quite informal but offer a chance for the caring other halves to share experiences as much as for us PwPSP. Anyway, I believe that we are the closest to a South Devon PSP group that you will find. We are just three couples at the moment but , apparently, we may be officially recognised by the PSPA if we get to six or so.
I'm very sorry - I decided to pare down my original message, you know, the bit where it said that we live in Churston just the other side of Brixham whilst the other two group members live in Teignmouth and Dawlish.
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