My 62 year old husband was diagnosed with PSP officially by his neurologist last week. A Professor at The Eye Hospital had told us it was highly likely it was PSP about 3 weeks earlier when we went for tests but we had to wait for confirmation. Like many others we had never heard of PSP before it was mentioned that day and like many others were initially told it seemed like he had Parkinson’s with something else they couldn’t identify.
I think we are three years in … during 2020/21 covid pandemic my husband became withdrawn and quiet and when restrictions lifted he didn’t! He wasn’t sleeping , was very anxious and withdrawn but because the doctors were not seeing people face to face we kind of ignored it and ignored it…until we couldn’t. The last 6 months has been a roller coaster and we have seen rapid decline. He is almost non verbal already….can speak a little when he wakes up then only yes and no, if that, as the day progresses as he gets so tired. His face is frozen so no expression to help work out if it’s yes or no. He is on mashed foods as started being unable to swallow properly in April. His eyesight is weak, he’d been wearing sunglasses indoors for about two years and kept talking about bright lights and now he has the classic gaze issues but fortunately he can walk quite well. He’s frail and weak and constantly exhausted so sleeps a lot.
Now I’ve read all your posts and replies on this forum and everything on the PSP Organisation site I understand the disease more and feel a mixture of determination to be positive and strong for him but also have fear of the road ahead.
Thank you for reading this and hopefully I’ll be able to join in with posts and replies and feel part of the Group.
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Sun-flowerwearer
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Hi Sun-flowerwearer ! I was in the middle of writing to you on my PC when suddenly my words of encouragement and positivity vanished from the screen ! So condensing what I said , most of us here like you and your husband had never heard of PSP until we finally figured out what was going on ; some of us experiencing misdiagnoses and inappropriate treatments along the way. But here we are ; all trying to do the best we can given our unique situations ; PSP afflicted people and those in the role of caregivers . This site has been a great help to me ; with far flung people from varied backgrounds all concerned about one another and offering emotional support , encouragement , humor , ideas for interventions , updates from the medical world , info on every aspect of pretty much everything one deals with related to PSP . My sister has been living with PSP for over 10 years and I'm her main caregiver. We live in NY and since we have a completely different health care system than GB , I'm unable to offer any input related to navigating that, but as the site is GB based , you've probably noticed that there are many people posting who live in GB and have a wealth of info re: dealing with the system there in order to get the assistance needed .
I'm so glad that you found this site ! Best wishes from my sister and I in NY. If there's anything that I can contribute by way of the years of practical and professional experience as a caregiver and RN for my sister , please don't hesitate to get in touch . Know that you're a heck of a lot more capable than you may think !! Take care , Elise
Hi Sun flower wearer, Its late as we've been on adventure to see Gretchen Peter's on her farwell tour in Exeter tonight and survived 😀. Wasn't sure how it would go as my husband 64 has PSP and is struggling with mobility and eyes quite badly but he enjoyed it and I'm so glad we went. I will reply more fully. But in the meantime I wanted to say hello from West Dorset, so nearly neighbours. Take Care Milli dog x
The group no one wants to be in but it’s really useful to ask questions and get support from people in similar situations.
My Mum is 69 with CBD and PSP, she lucked out on not one but two being active at the same time. They think she’s near to five years in, can just about still walk with a rollator but her conversation is worsening, she can’t use her left arm at all as it’s twisted, her left leg is also twisting, her gaze is blank, her words are confused at times and some days are worse than others especially when she had shingles the other week.
Take each day as it comes, I’m a planner but it’s driving me insane with the lack of knowledge about the future.
Looking after Mum currently is five days a week, we have carers three times a day for personal care and she currently live in extra care living but for how much longer - the physio thinks she may not walk by the end of the year. Try and get some support for you, it’s going to be a exhausting ride, but there’s no where I’d rather be she’s my Mum and what ever time she has left (which I swing from I don’t want her to go but I don’t want her to suffer so hope she doesn’t).
Maybe contact your local hospice, ours in great in supporting me and Mum.
hi Kelmisty, thank you for replying. I am only just realising how enormous the emotional challenge will be caring for my husband let alone any physical challenges. The thought of being 5 years in like you are is daunting! Tough also being a daughter of a double disease sufferer. I have an adult daughter and she is a fantastic support for me from a distance as she lives 3 hours drive away but she’s checking in on FaceTime daily and coming to see us this weekend.
It’s such early days we still have to access lots of support. We only saw a named GP two weeks ago but we have a dietician coming to see us next week and have had contact with Speech and Language Team so it’s starting to take shape. The word Hospice holds so much meaning and right at this moment I think I don’t want to say that word out loud to my husband.
A lot of people don’t realise hospices are about living with a terminal diagnosis not just dying. Our hospice is amazing they have helped to ensure I’m getting mum the right benefits and support paperwork and help me to make decisions.
A couple of things to be aware of Mums dietician spoke about tube feeding as we need to know the options - so don’t be surprised if that’s mentioned.
SALT gave mum some exercises which she refuses to do.
You should see the Parkinson’s nurse and an occupational health therapist too.
Whilst they think Mum is that far in, I’ve only had to look after her for two years.
we are seeing the dietician next week.. I think they will bring up topics and help us broaden our conversation as at the moment we are tip toeing around each other emotionally. I think my husband is 3 years in with hindsight. Sad sad situation for us all. X
Hi Sunflower, I rarely contribute these days, my husband finished his PSP journey a long time ago, but I still come on to this site every day. It has been SOOOOO much help to me over the years, I have now got life long friends, whom we all speak on Zoom every week. Never be afraid to ask any question, no matter how trivial it might seem. Nothing is trivial about PSP! Voice any worries, kick and scream, we have all been where you are, we all have the tee-shirt. Nothing ever shocks us.
The one thing that made me reply is about the Hospice. As Kelmisty as already said, Hospices are vital to you NOW. They are not about people dying of Cancer, but an organisation that helps people live with life limiting diseases. They were the only ones that had heard of PSP, with all its wonderful symptoms, that nobody understands. My husband went regularly to a day centre over the years. He loved it and he was definitely not the sort of person you would think would.
Marie Curie is another life line.
The most important person in your husbands journey, is you! Please, please make time for yourself. As they say on the plane, “put your own oxygen mask on first, before helping others”. You have to be at the top of your game, physically and mentally. That will only come with plenty of rest, a good diet and HELP. Lots of it!!! Never be afraid to ask. Sorry, but you are not superwoman, none of us are. We have all tried and failed big time. Who get hurt the most then? Your loved one. Don’t let that happen to your husband.
Lastly, concentrate on what your husband can do today, not what he can’t and todays challenges need to addressed before worrying about tomorrow.
Thank you so much Anne. Lots of thought provoking information for me to digest. I will take experienced advice and look into local hospices. I have to adjust my own nervousness and hesitancy about asking for help as keep thinking I don’t need it yet. I can do everything required at the moment etc.
Im getting emotional just reading everyone’s kind and supportive comments. Thank you xxx
Hi Sun-flowerwearer. Unlike most out here, I am the PSP patient. There are a few of us that look at these boards. But my Apathy has a tight grip on my posting much of anything these last 2 years. My first Backwards Falls began in early 2016 when I was 57. I'm about to turn 65. I was diagnosed in 2019. I am still able to talk but it's slowed and slurred. My thinking is jumbled quite a bit and I have word finding problems with spoken and written forms. I've been in dark glasses for at least 4 years. A Neuro-Opthalmologist gave a YouTube presentation where she said a better choice of glasses for indoor use is a shade called FL-41. I got mine on Amazon. I have the PSP Associated Executive Function Dementia that most of us have. Though it's sometimes hard to tell I have it until I am presented with too many choices or I have to make a decision or plan. You can respond to me but as I said, Apathy has a tight grip on me. So, you may not receive a rapid response if any.
thank you so much for replying Railfan as I appreciate it has taken tremendous effort on your part. I shall google the information on glasses. My husband too finds following conversations challenging and I’ve realised already he feels pressurised when I give too many choices and blanks me out rather than answering. Wishing you well.
Thank you so much for the response you gave. It has really helped me try and understand what is happening with my husband, it sounds so similar. Really appreciate it.
Morning Sun flower wearerWe live east devon Father in law has PSP diagnosed 3 years ago but think hes had it a long time before.
Hes loosing the ability to walk now his speech is very poor falls a lot but never seems to hurt himself. Has a carer in the morning to help get up wash and dress but can see that soon becoming nights as well.
It's not a nice place to be but mother in law does all she can for him and my hubby is on hand when needed.
Just ask for all the help you can get and keep pushing until you do you will need it.
Hi Happysole, thank you x I think because it’s so new to us and I’m fit and able I think I can do everything but I am understanding from these forums that I need to have information, contacts, help lined up in advance to call on when I do need at short notice the PSP progresses so fast. That’s what happened with swallowing..one day he could eat anything, then he couldn’t! So I will heed your kind advice.
Hi Sun- flowerwearer, I am greatly saddened for you, having to face this, as I went through it with my wife (PSP). I see you have read the info on the PSP Assossiation website. May I suggest you phone their helpline as it is good to be able to talk to someone who understands, in addition to the valuable advice and support offered here. In addition to the helpline the Association is currently endeavouring to recruit/put in place Link Volunteers around the UK. These with experience in looking after a PSP/CBD family member, visit to give face to face support. There may be one in your area 🙏
Thank you, yes when I joined I received a phone call from a lovely lady at the PSP Organisation called Cathy. She mentioned the aim of having Link Volunteers but as yet not one for my area but she told me we could join zoom support groups and ring in if needed to speak to her. Fantastic feeling to have such a lovely response. I agree it’s hard having to explain the illness in detail to people as they’ve never heard of PSP. Even an experienced hospital Matron friend of mine hadn’t heard of it.
Sun-flowerwearer, I am ever so pleased you have been able to talk to someone, it means such a lot. We had 4 ambulance crews attend my wife and none of them knew of PSP. My wife insisted I did not let them go before they knew all about it. She was so insistent that anyone who came went away fully briefed, so as a legacy to her I try to spread the word. All the 6 instances of PSP/CBD known to me in my area here in Scotland, each was associated with a different surgery. A GP may never come across the conditions and then perhaps only once in a lifetime hence the lack of knowledge. MND is less common than PSP/CBD but better known to the public at large, because of the high profile sportsmen such as Doddy Weir & Rob Burrow plus Kevin Shinfield's marathon efforts recently to raise millions for research. Those with PSP, like comedian Dudley Moore & folk singer Linda Rhondstat don't seem to have captured the same attention.
so true… I have actually said to people ..it’s a bit like MND as then they can identify with something equally as serious and terminal
Once I have confidence myself in understanding the disease I will also try and be more vocal and try and enlighten people going forward to help spread the word. X
yes I would love that..especially interested in how you both got on on holiday in Malta and any good or bad things that happened that you felt you’d change or do differently next holiday. I have to go out now but will be back on the forum later today hopefully.
Hello we were referred to the Community Matron service via the GP, a support we couldn't do without.The Matron supported our CHC application and the package of support we have in place.
Any concerns she visits, arranges blood/urine tests, refers for services, attends meetings, liaise with the GP amongst other things.
We live in South Devon and, following the suggestion of my Parkinson's Nurse, we set up what we call the South Devon PSP Group. It is unofficial at the moment but when we get to six or so members, we may be invited to join the PSPA list of community groups. We are currently just three couples, the gentlemen of whom are those with PSP along with their caring wives.
Anyway, we meet up every two or three months and at the moment our get-togethers are very informal, giving the ladies a chance, at least, to chat through the latest developments etc.
You are most welcome to join us though I do, of course, realise that caring probably takes up much of your time and traveling with your husband may not be easy. You may, therefore, with Devon being a county long and wide, prefer to speak to your PD Nurse about beginning a mid-Devon group, We are near Brixham whilst the others live between here and Dawlish.
In the meantime, I wish you the very best of luck! I understand that we PSPers can lead you precious carers a merry dance. You must look after yourselves, too.
We are based in Tavistock. It’s quite a drive to Brixham/Dawlish area but possible. Unfortunately PSP has already robbed my husband of speech other than the odd words occasionally ..we are using thumbs up and down already for yes and no ..also his face is frozen so he shows no emotion. He would sit silently in a group situation. He did say he would like to watch the PSP organisation zoom meetings though and observe. X
Hello Birdbag. Very happy to count you in. We contact each other using WhatsApp - does that cause any difficulties for you? If not, I will eventually need your mobile phone number. The thing is, I'm not sure how to give you my contact details or for you to furnish me with yours without spilling the beans to the rest of the community (though I'm sure it would be perfectly safe 🙂). Anyway, I have left a query to this effect with the technical staff at HU HQ . I'll be in touch again when I have heard back from them. In the meantime, don't forget to be kind to yourself as well as your husband.
Hi I was diagnosed with PSP almost 2 years ago, but my symptoms haven't changed in that time. I don't fall backwards or have problems with my eyes or feeding. My consultant is referring me to a chap in London who is the top specialist in the UK for this condition,. 'I don't know if there's different types of PSP, but I don't seem to fall into the same category as most people on this website.
Hopefully you will find the support you need from the lovely people who write into this page.
Hello Redpesky, let’s hope they got your diagnosis wrong and down grade it to some form of Parkinson’s. Our Neurologist says it presents differently for different people. My husband doesn’t fall over and can walk but he often cannot speak, freezes, is slow in his movements, he can’t swallow solid food , cannot move his eyes or blink and sleeps a lot x
We're in a similar boat--my husband is 59 and was tentatively labeled CBD in 2018, but now the doctor just this year has said it's PSP. Only this year are his symptoms becoming more and more obvious. He's still working, but online as we fight for accommodations to get him to retirement age. I see the differences settling in, and the apathy is maybe the hardest part, because then he doesn't want to walk or exercise or do the things that will help long term. We have two teenagers, which makes it so much more stressful because of the fallout on them.
This group has been incredibly helpful! Better than most of the doctors who have no idea what to do with a Parkinsonism that doesn't respond to levodopa.
Hi Lost (what an appropriate tag name for dealing with this disease). It must to doubly hard with teenagers living with you at home and having to be the strong Mum for them. I have two adult children who live in other parts of the U.K. in their late 20s and I feel worried about putting too much emotional strain on them. I can’t imagine how hard it must be for you. Xx
Sorry you have had to join this group but glad you’ve found it. I find the monthly zoom groups that PSPA organise really helpful, have you been able to join these? Through this, I’ve found how people afflicted with PSP present really differently also the speed of these presentations vary greatly. We’ve also noticed sadly that there is a real post code lottery of help. In these zoom groups there is a lot of help, support, good ideas and a chance to share experiences and also have a laugh! I’ve met some lovely people through this zoom group.
I would like to add, do try and plan and think ahead, though it’s difficult but somethings (equipment, funding for example) take time to get in place.
Sorry to read about your husband. It is really tough, my husband is 3 years into the illness. Because he doesn't talk much people don't realise his brain is still working. Speech like swallowing is difficult. I am taking him to Italy to see his family next week...think it will be his last visit. No insurance! Just taking a risk. Best wishes, jean
Sounds like our husbands have similar symptoms. I notice most people don’t look at my husband or talk directly to him as they misunderstand his blank expression and lack of speech as not being mentally aware. I feel sad because I know he’s aware they are not engaging with him. We are also going to Menorca at the end of June for a holiday. I booked this last November and travel insurers have withdrawn their cover after I advised of terminal prognosis. I couldn’t find any insurer who would insure him so like you we are travelling without it. Like you I think w this may be our last chance of a holiday abroad. I hope you have a lovely trip seeing family xxx
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