What would you advise me to find out about regarding the PSP diagnosis, before mum leaves hospital?

[10greenfingers]

Hi. My mum has just been diagnosed with PSP aged 90 whilst in hospital after a fall. She fell as a result of a stroke it is believed. Now she is on a stroke ward and nothing more has been mentioned about PSP at present.

[honjen43]

Hi 10greenfingers and welcome.

What a great age your mum has reached! And then to survive a stroke and be given a diagnosis of PSP!

My husband suffered from CBD which is a related brain illness, but I have no experienced of PSP other than what I have learned here. He died age 77.

PSP can show symptoms and gradual deterioration over any time up to around 15 years. At her already great age, I feel it could be of less concern than another stroke or another fall, either of which may hasten her end. Get her safely home and plan the rest of her life together.

My thought is for you both to give your all to enjoying whatever time you have left together! Find out how she feels about her end of life and try to have a good and positive outcome. Plan and understand her wishes.

Then forget about illness and dying and just enjoy life. I imagine at her age she will have her own views, and if something like another fall or event affects her, she may well not fight it, and will simply decide enough is enough! This is exactly how my 96 year old neighbour faced her end of life after what seemed to be a minor fall.

If your mum needs help at home, then get help, day and night if needed, and try Hospice if that is a possibility. Most people seem to want to die at home rather than in hospital, and life is so much simpler in this Covid age if she is at home. Be with her as much as you can.

Look after yourself too. Get your family onboard for both of you. This is not always an easy phase of life.

Take care! There will be lots more advice and support coming your way through this site!

Big hug

Jen xxx

[HilsandR]

Hi 10greenfingers,

Jen’s response to you has covered it all really and I cannot add to her wise words. I would be interested to know how the medical people came to a diagnosis of PSP. You will often read on here how diagnosis of these neurological illnesses can sometimes take years, especially when the early symptoms can be so subtle. In my husband’s case PSP was picked up on brain imaging, 4 years after seeking a diagnosis, when the neurologist picked up the hummingbird sign, making a diagnosis of PSP most likely. They can never be 100 percent sure but it can be confirmed upon brain donation should that be the wishes of the sufferer.

As Jen said, get your mum home and live each day as it comes. Hopefully, you may have the advantage that because she is in hospital, discharge won’t be allowed until support at home is in place (I’m assuming you are in the UK) arranged by a multidisciplinary team, so make sure you push for that otherwise it may be a lot harder to get once she is home.

Again, as Jen said, there will always be someone on here to offer you support so you are not alone.

Best wishes,

Hils

x

[10greenfingers in reply to HilsandR]

Thank-you for your reply, Could you please explain 'hummingbird sign'?

[HilsandR in reply to 10greenfingers]

The hummingbird sign refers to the appearance of the brain stem on imaging. In people with PSP the brain stem can have the appearance of a hummingbird and gives a good indication for PSP as diagnosis. Even with that, my husband’s neurologist always referred to the diagnosis as ‘probable’. Other clinical symptoms such as backward falls, eye problems etc are also taken into account when making a diagnosis.

Hils

x

[AJK2001]

Regarding the diagnosis question my Mum was diagnosed through sudden backwards falls and problems with eye movements and double vision.

With regards treating PSP there is nothing I am afraid that can be done. All that you can do is try to manage the symptons which vary from person to person but as the condition progresses tend to be mobility issues, speech & swallowing problems. Look on the PSPA website, there is loads of good info there. If in the UK you can call their helpline & they have good info on how to apply for CHC funding to cover care costs. Before your Mum is discharged from hospital there should be a care plan put in place. Everyone of us is of course different but my Mum very much wanted to stay in her own home and was able to. She lived in sheltered accommodation which had staff on duty 24/7, so if she needed anyone there was an emergency buzzer she could press & even when she could no longer talk louder enough to be heard on the call system, someone was available to go to her apartment and see what was wrong straight away. She had carers 4 times a day and I would spend the afternoons with her as that was the time she was most likely to get restless & try to get up, which would then result in a fall. We had our moments facing PSP, it can be very frustrating, but we also continued to enjoy each others company and still have fun together.

So it is a challenge but to echo Jen try and make the most of things and enjoy your time together.

[daddyt]

Excellent advice from all the responses to your query. Acknowledge the disease and the symptoms that will follow. Not every day will be good, but there will be good in every day - make the most of it.

Tim