Willowden2 months ago

Hi Derek, So sorry to hear about your wife’s diagnosis- particularly at such a young age. My mum was diagnosed almost 3 years ago, there is such a lot to take in.

It sounds like you’re getting organised. I would add that your neurologist should be able to link you in with a Parkinsons nurse, who we have found helpful.

We also had help from our local hospice. Mum was offered counselling through them, though she never took them up on it and they also helped with the Advanced Planning conversation. It was upsetting at the time but as we approach that phase now, it is reassuring that both myself and the professionals are clear about mum’s wishes. Get as much in place as you can now . Have you got Power of Attorney?

This site has been a huge help during our journey. Best wishes to you and your wife.

Take care

Millidog2 months ago

Derek, I am so sorry you've had to join us. I understand the shock state you must be in at the moment. I found it helpful at time of diagnosis to call the Pspa helpline. They were wonderful at talking me through what I needed to consider and suggested an early gp appointment rather than waiting for neuro letter to gp They have useful medical professional psp documents and suggested I take one to gp and along with a list of requests and questions to discuss including - registering as a carer at surgery then you can be point of contact for everything, getting onto their priority patient list, requesting referrals to physio, OT, parkinsons nurse if there is one, SALT. Voice banking . We did this and it was hard at first as doctor was not receptive to helping at all but we requested a gp change at the surgery and we now gave one who is very receptive and helpful. It's also worth asking gp or pspa about counselling support in your area. There are often carer charities that offer for you and local services possibly for your wife. Pspa can also advise on information about benefits eg pip or attendance allowance which can also bring council tax reduction, blue badge, carers allowance etc. And advise you on who to take to about pensions and financial help Other useful sites are CAB, age concern and your area carer service. Future considerations will be equipment and again the pspa helpline can advise what and where from. I hope this information helps a little gx

Millidog in reply to Millidog2 months ago

Forgot to mention. The pspa often have a newly diagnosed zoom group and cover lots of subjects such at poa, advance planning, speech and language, physio. These sessions are informative and also provide chance to ask burning questions and gain useful info from others in group x

Reply (2)Report

Derek1uk in reply to Millidog2 months ago

Thanks very much for taking the time to reply, it's appreciated. We've linked on with the Pspa and they've helped out with the PIP form filling ad someone's coming next Thursday. Unfortunately I missed the first group yesterday as I am still working at the min, there's another one based in London but on Zoom next week so I'll try and make that one. The local G.p isn't able to get to speak to Jackie any earlier than next Monday so hopefully something will come through from the consultant. Thanx again for reaching out.

Reply (0)Report

45purple in reply to Derek1uk2 months ago

hi sorry to hear of your wife’s condition. My husband was finally diagnosed with CBD in October last year after 10months of tests but he has shown symptoms for about a year before. Speech is differently every day sometimes very poor knows what he wants to say but can’t say it also writing has gone to. He looks amazing well. We found the Parkinson’s nurse to be very good also Borders care team who are there to look after you. Ask your doctor, physiotherapist if you have anything like this. We live in the Scottish Borders and they’re very good here. As for yourself I know how it feels when you receive news like this but stay strong and take all the help you are entitled to.

Reply (2)Report

bichonbear12 months ago

Sorry to hear that you have had to join this group. PSP/CBD are cruel diseases and it’s a highly emotional and upsetting journey. You will find a lot of guidance and support here through personal experience which has really supported me (my mum has advanced CBD). Power of Attorney for finance and health is important to get in place and as hard as it is, open family conversations about wishes and wants. This is one thing I wish we did more of as a family when we could with mum but we struggled to digest it all at the time. Do start to build a relationship with a local hospice, they are an invaluable support throughout and the best thing we did. Wishing you great strength.

Amstel952 months ago

Derek, I really relate to your post. My partner was diagnosed with PSP in September at the age of 56 and the initial shock after diagnosis is terrible. I was a complete rabbit in the headlights, knowing that many things needed to be done but not knowing which way to turn. Our experience is that the medical team takes time to kick in, but we now feel very well supported, and the PSPA is amazing. My partner finally got to meet his Parkinson’s nurse a couple of weeks ago (4 months after diagnosis) and something she said really struck me - “just because you have a name for the condition doesn’t mean that anything has to change”. I don’t know how far on your wife’s symptoms are, but whatever she could do two weeks ago she can probably still do, and that’s the basis for carrying on - one day at a time. Nobody can tell you how long it will take for the symptoms to develop, so it’s better just to take things as they come. However the diagnosis does allow you to access expert support, and should enable your wife to claim a pension on the grounds of ill health. This will depend on the pension provider, but in my partner’s case his age was immaterial. The diagnosis also allows you to plan, but you don’t necessarily need to rush into anything. I know it is small consolation, but 4 months post-diagnosis I am feeling a lot more positive than I was. I hope you will too.

Dickwin2 months ago

Derek,

I was told by our movement disorder neurologist that life expectation is between 5 and 7 years from diagnosis. My wife started to experience PSP symptoms over 10 years ago. She was 47 at that time. She was not correctly diagnosed for 5 years. She is now 5.5 years from her PSP diagnosis and, while I would categorize her as advanced stage, she is still hanging on. I think she could be with us another 5 years. I also think she could get a bout of pneumonia and be gone in the next 6 to 12 months. That is the nature of PSP; it affects everyone so differently. It is almost impossible for us to know. All we can do is take it 1 day at a time and view every day as a gift and an opportunity to show our love to our loved one. I wish you luck, love and perseverance on your journey. And patience too...it's a marathon, not a sprint.

Warm Regards

Kasenda2 months ago

Sorry to hear of your wife’s diagnosis. There is more awareness and support for PSP now than 11 years ago when my husband first had symptoms. I can say that though he is now in a Nursing home, he had a decent quality of life up to last year. We were out daily and managed to find beauty in each day. He has had the joy of seeing our granddaughter grow up. I hope you and your wife will also try to make the most of time as you care and support her. Please join a support group if there is one in your area. It’s been a great help to us.

Dickwin2 months ago

Derek,

I am sorry you find yourself on this site. It is truly a collection of wonderful, helpful and empathic people who all wish they were not here. But they are helpful and generally, better informed about PSP, CBD and MSA than most medical doctors you will meet. (Most MDs will never have heard of it).

I am sharing a link to a PSPA article that breaks PSPs progression into 4 phases.

brainsupportnetwork.org/fou...

This article gives what I find to be a very helpful guide to this disease. But remember always that PSP onset is highly variable. Some of the symptoms listed here in the first stage may not happen till Stage 2 or 3, and visa-versa. And what may seem a negative development may be a blessing. For example, my wife became chair and bed bound in Stage 2. But not being ambulant has dramatically cut down on her falls and almost certainly prevented more and more serious fractures.

I hope you find this useful. the first few months after diagnosis are so overwhelming. Good luck to both of you.

captainsdaughter2 months ago

Hi Derek, like others have said, so sorry you’re also in this situation. My dad was diagnosed last July although initially he’d been diagnosed with MSA, another similar condition. I’d definitely reach out the PSP association as they have been very helpful. Also be prepared to have to wait for everything to kick in…nothing happens fast! Applying for the attendance allowance is the trigger for other help, and like wise getting an OT assessment is the trigger for getting help like carers, stairlifts etc. PSP is such a variable condition but my advice would be try to get things in place before you think you need them as everything has waiting lists. We’ve also accessed counselling for my dad through the local hospice who have been very helpful. This site is very supportive too. Best of luck for both of you

timbowPSP2 months ago

Hello Derek, what a damn glitch in all ur works this must be. I was so pissed off with neurologists negativity that I have done my own thing now for 4 yrs. I am 80, diagnosis PSP 4 yrs ago. I have partner/carer.

Diet w/ organic veg, exercise, supplements, therapies, etc. Many discoveries en route, and I have it all written up, in 3-4 pages A4, including re driving. Can send you copy, but best by email, so pls send ur email if you dare .... or I can splatter over all these PSP pages, after some edits first.

Above all remember PSP stands for Please Stay Positive!

My very best wishes to you both. Timbow PSP

Rose1sunflower2 months ago

Sorry to hear of your wife’s recent diagnosis.

We have found that the condition is really variable on how it affects people both in what it affects and speed. (Keep mind and body active, the apathy was difficult to deal with at first, hadn’t known it was part of PSP).

Where you live also seems to affect the response, availability and understanding from health services. As people have said, don’t hold back on organising/ordering things as they can take a time to get in place.

Some things to think of…,

•Power of Attorney Health and Finance

•Attendance Allowance. Benefits can really vary as to age. Carers association can guide on this.

•Blue Badge

•Local Carers Association (emergency carers, financial advice)

•Have it noted on yours and your wife’s Gp records that you are Carer

•PSPA Carers Support Group

•Physio, OT, SALT, Neuro nurse. We are lucky to have this team and 6 monthly visit with Consultant, I know this varies greatly with each geographical area.

•PSPA of course! The quite new Carers Support Group is useful and you don’t feel so alone. (My husband did not want to join the newly diagnosed group).

•This forum!

I’m sure others may add to this list from their own experiences.

Good luck, though I’ve said don’t leave things as they take time, you can’t do all the above at once! Take care of yourself, this does affect the whole family, witnessing it and dealing with the jobs your spouse/partner did as well as your own and looking after of them can take it out on you.

Best wishes

David7502 months ago

Hi Derek, I really feel for you as I have gone right through it with my wife. I was retired, so totally different for me compared to you still working. To keep working you will need close family support with hands on assistance, as a professional carer support package via social sevices is more difficult these days. I concur with all that has been said and I comend you for being so well organised already with support sources.

In my case I found I needed to be closely involved even with carers (2 carers 4 x a day latterly) as I had to have everything organised so facilities, materials & food of the right type had to be on hand when needed for the carers and myself. Food consistency for swallowing towards the end was the most difficult. Slow cooker, liquidiser, microwave, Digny bowls (heavy ceramic that held temperature over feed time) & nosey cups with detachable handles were the basic essentials for me.

Each PSP patient is different in the rate and order of loss of abilities, so difficult to give further advice hear. Your Zoom support group will be invaluable in supporting you through the changes. All my best wishes.🙏🙏

LostinHeadSpace2 months ago

Hi Derek,

Just wanted to jump in and say that my husband and I are in our 50s and are also stumbling through the CBD/PSP diagnosis process. The last neuro visit changed it to more likely PSP. It’s so wild to be going through this at our age (We also has kids late so have teenagers, one still not yet in high school.). I envy even those who got it a bit later in life! We’re now 6 years since the first possible CBD diagnosis, and it hasn’t gotten worse as fast as it did for others. Just wanted to sympathize with how overwhelming it all feels. Like you, we jumped on some early planning with paperwork, and now we are muddling through how to get to retirement.

Best, Lost

Derek1uk in reply to LostinHeadSpace1 month ago

Thanx for the reply, I'm sorry that your going through this condition too, I managed to get through to the hospital yesterday and we got the name of the Neurologist to find that there were GAPS in his report. Now we were told this could be because the typer of the report may not have been able to understand the Neurologist who dictated it............ I asked what happens next and they said it goes back to the Neurologist and he FILLS those gaps. So I asked what had been put into the report and we were told "Potential Psp...........What the frig does that mean??? Does my wife have it or not??? So we may have been grieving and planning and it not be........... although I doubt it the way she's been since then sadly.Derek

Reply (0)Report

Zerachiel in reply to Derek1uk1 month ago

Hi, my wife's first visit to the movement disorder clinic was early 2020, although PSP was mentioned vey early on the actual diagnosis was not until October last year; there is no easy test for PSP, they have to rule out all other possibilities before eventually an MRI scan will confirm the diagnosis when it has progressed enough to show. It is frustrating but be patient with your nuerologist as they have to ensure the correct diagnosis to be able to treat accordingly.

Reply (0)Report

Derek1uk in reply to Zerachiel1 month ago

Hi Zerachiel thanx for taking the time to reply, my wife has had an MRI scan and it's shown "Shrinkage" in her brain stem, plus the consultant we saw (although a Locum from another area of the UK) specialises in the condition.

Reply (0)Report

LostinHeadSpace in reply to Derek1uk1 month ago

We have finally gotten to see a top-level neurologist with lots of experience with PSP and CBD and MSA and all. . . and she assured us that once we knew we were dealing with one of these tau diseases (and not regular Parkinsons that responds to levodopa), it didn't matter as much what exact diagnosis we had. I'm like you, I want to push and fight for information so we can plan, but I'm gradually becoming convinced that it's more about fighting the symptoms and trying to get a step ahead of the actual physical therapies and things. You both will go through your own adjustment to news like this!! My heart goes out to you both!

Reply (2)Report

Rose1sunflower in reply to Derek1uk1 month ago

Ours also says something like ‘potential PSP’. I think as there are no blood tests, for example, to confirm it, this is what they say. Even after about 4 follow up visits to consultant and joining research programmes for PSP, new letters still say ‘potential PSP’!

Reply (1)Report

Kelmisty1 month ago

The best support so far has been from the hospice, they can advise on services, chase appointments, help with benefits and funding.

My mum was diagnosed in November at 69 they think she has had it 4 years and it scares the life out of me. They haven’t told her much but we have an appointment with the Parkinson’s nurse next week - so I’m hoping she explains more to mum rather that me having too and she’s now asking questions.

Kayelless1 month ago

Derek,

I’m the patient, with “probable PSP.” My neurologist says tests can’t be definitive for this group of diseases so she can only say “probable.” Only a look at the brain as part of an autopsy can be final for diagnosis. To me it’s all alphabet soup anyway and they share many of the same symptoms so I don’t spend too much time worrying about the label.

Get a neurologist who knows these diseases. They’re tricky to handle. Ask any neurologist you’re considering if they work with PSP/MSA/CBD. It may take months to get to see a good one but it’s worth the wait. I found using the word “Parkinsonism” can help docs find a place to start. I went to a good Emergency Room (I’m in the US) and none of the staff knew what I was talking about when I mentioned PSP.

Read everything you can. Get on the Zoom groups - it’s comforting to hear from others who are at various places along the path. Ask questions here.

And talk openly with your family when you feel like you have a handle on the basics - I told the whole family including adult nieces and nephews about it as far as I understood it over a single Zoom call and the nieces with kids/babies regularly send me pictures and videos of their kids that make me feel like I’m in touch with them often.

Symptoms seem to come and go, then come back stronger than ever. I’ll have a good week where I can cook simple meals and use a walker, then the next week I’m in a wheelchair and holding a pot of hot water for cooking is downright dangerous.

Accept the “new normal” - often it feels like something I could do yesterday, even a minor task, can’t be done today.

You two will experience lots of spills where something that was in hand ends up on the floor. It’s very frustrating until you you decide to “let it go.” That’s my mantra for big and little problems.

I take the opportunity every time to ask myself, well, given this problem, how could I do it in a different way? For instance I bought a steel expanding net with handles that I put in a hot water pot for noodles or veggies. When they’re done I pull the food in the net out of the hot water and let the water cool on its own before moving it. This means I won’t get burnt, although it’s still likely some water will end up on the floor.

I have a jar lid opening device. It’s my daughter, who will open jars and cans I’ll need soon and put them in the fridge for me.

We moved things I need regularly to lower shelves.

We bought lighter plates and bowls. There’s a lightweight brand named Corelle over here that’s shatterproof. See

We replaced glass mixing bowls with lightweight steel bowls.

If you’re people who like puzzles the very act of figuring out how to do things in a new way can actually be rewarding.

Take care. Don’t be shy about asking people on this forum.

Kyle