My 73 year old husband was diagnosed with PSP in September 2023 after five years of having symptoms. He was originally diagnosed with old age and then Parkinson’s and then Parkinsonism and then Hydrocephalus. He’s deteriorated rapidly in the last twelve months. We’ve banked his voice although given his current presentation: confusion, not finding the right words, and memory loss, I don’t think he’ll be able to use his laptop. His mobility is poor and his legs often freeze. I kept thinking his brain has had a power cut and then it comes back on again. He also has bladder incontinence. Since he was diagnosed, much to the consultant’s delight, we’re getting very little support. I’m in regular contact with our local incontinence unit and only just received a call today after 8 weeks. My question is about how this horrible disease progresses. My husband was an academic, bright and alert, but he now struggles to talk, find the words, gets confused, angry, and is a shell of his former self.
Rapid Deterioration: My 73 year old husband... - PSP Association
Rapid Deterioration
It's a devastating disease that takes away the person you once knew. My mom was a bright sociable busy person before PSP took her away. I'm so sorry to hear of the journey you and your husband are on its so cruel 🙏😔
It truly is a cruel disease and unfortunately there is no simple path of symptoms they follow. My husband who is 78 was diagnosed 2 years ago. He know uses a walker and can still have the odd fall. He hardly talks and when he does it is quiet and slightly slurred. He also is now fully incontinant and suffers with apathy. He has no desire to leave the house except for appointments and has just excepted this is who he is now. Luckily he has never suffered with anger or frustration for what he has lost.
Take care of yourself and take each day at a time.
Yet again I hear the story of Parkinsons and Parkinsonism with reluctance until it is too late to identify PSP. Just how many people have suffered and died under the banner of Parkinsons in the past when it was PSP or CBD. We really do need to get it recognised by the medical profession as a separate disease then there may be some hope of a better way of treating it in the initial stages much earlier. I know there is a later MRI machine that is capable of identifying neurological problems in the brain in much better detail to separate the different problems.
I’m so sorry to hear and just know we are all with you and understand. Did he have the shunt procedure for the hydrocephalus? I’m assuming he was diagnosed with normal pressure hydrocephalus?
They removed some fluid off his brain and did cognitive/movement tests before and after. No difference. It was only falling a series of falls (backwards) that the consultant changed the diagnosis.
Hi
I’m sorry you have had to join this awful PSP journey, where symptoms are many but as we know not everyone experiences them all. My husband was diagnosed 2 years ago and also went through the horrors of misdiagnoses. Sadly he has deteriorated over the last 6 months, has frequent falls and requires support with all activities of daily living. However we have been lucky to have received a lot of support, initially from the neuro team/ Parkinson’s nurse and now community physio, OT, SLT, continence service and GP. Of course the PSPA are also a very valuable resource and the monthly on line carer forums are a good support for me as his main carer.
I would ensure that you ask for all the necessary referrals to be put in place early so services are aware of his needs, especially as it sounds like you are living in an area where waiting times are longer!
Happy for you to message me directly if you just want to ask questions or just rant -we all need this outlet as some point.
Take care x
Hi
My intelligent and bright husband was diagnosed in May 2023 and has died already. I can think back to changes in 2020/21 so maybe he lived with the disease for 4 years. He was 64 years old when he died 5 weeks ago. In hindsight I think it’s so important to discuss wishes while they can … When my husband and as diagnosed in May 2023 he was still able to get into the car with help, to go out for a coffee, to walk quite a good distance but struggled with foods and swallowing and speech ….. so swiftly he lost the ability to urinate and had a catheter, suddenly and without warning he lost the ability to walk unaided, suddenly and without warning he couldn’t s allow anything but puréed food, Suddenly and without warning his jaw locked up so even puréed food wouldn’t go down and it was liquid feed only, suddenly and without warning he stiffened up so badly I couldn’t move him in his bed and he developed bed sores…. Progress is unpredictable.
If you are in the uk please reach out to your local hospice. We had a specialist hospice nurse visiting us at home from September 2023 to death in August 2024. This one person was my rock, liaising with all healthcare practitioners, helping us when hospitalised, helping me as carer to make decisions, arranging CHC funding in the last few months… helping me when my husband was actively dying.. I could not have coped without Hospice support and guidance.
My affectionate, witty, articulate and intelligent husband has lost a lot over the 4 years or so since he first noticed symptoms. We’ve had times when it is overwhelmingly difficulty and where the grief (actual and anticipatory) is dark. Increasingly I have to focus on the positives, the hope, the things my husband can still do and enjoy, the memories we are still making, and put aside any feelings of “why him” and “if only”. It’s not about putting on a brave face (I don’t think I’ve got one of those) but focussing on things within “my zone of control” including choosing my mental attitude, and noticing each smile, each “proud moment” and each loving gesture - and mustering the assertiveness to get him the help he needs and deserves.
I know it’s hard and there are still harder days to come, so never be hard on yourself.
I’ve not yet tried counselling in this context but I believe I will (when I can just find the time). I believe the PSPA can help with that as well.
With hope and hugs 🌻🤗
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