PSP deterioration 😢

[Bettyboo2024]

my husband, who has just turned 66 was diagnosed with PSP after thinking it was Parkinson’s for 3 1/2 years. His decline has been so fast, he keeps falling backwards, he slurs his words, coughs and chokes on food and drink and is now very frail after losing a lot of weight.

He recently fell 3 times in one day and was taken into hospital and after initially being told he had a slight crackle in his chest and bruising with no fractures to shoulder and hips, now had a shoulder fracture along with pneumonia and is now retaining urine so is having to have a catheter!! I am so low and confused as to how he has deteriorated since his daughter’s wedding day 4 weeks ago when he managed to walk her down the aisle and have a first father daughter dance with her xx.

I am so confused as to how this is progressing can anybody shed light on this??? Thank you x

[Sun-flowerwearer]

Bettyboo2024

Please cherish the memory of your husband walking your daughter down the aisle and being at her wonderful day. That is a treasure for all of you to hold onto. PSP is an unpredictable progressive disease and changes can happen in hours. My husband was 64 when he died last August. In August 2023 anlthough ill with PSP could still walk his dogs for short walks and get in and out of the car. On 29 September 2023 it all changed massively. He too had a Foley catheter fitted for retained urine issues but ended up in hospital and on discharge a few days later on 2 October 2023 had lost his ability to walk unaided by me or another person. He never recovered his ability to walk. Our daughter was married on August 2024 and by that time he was bed bound and could not attend. His legs were too weak and stiff for him to stand at all. It was felt by all my medical advisors he was too frail to attend. I’m am so sorry you are experiencing this as I understand first hand the awfulness and heart wrenching continuous pain this disease means for you and your family and most of all your husband. In March 2024 my husband lost the ability to open his jaw wide enough to get a spoon in so had to have liquid Ensures as his sole diet fed in a sippy cup I held up to his mouth as his arms did not have strength to hold the cup up to his mouth by himself. This lasted 6 months … only ensures. He was 64 and in 2021 was able to sail a sail boat single handedly in the sea, balance on deck and moor it … within 3 years he was dead. Cherish the moments x

[Bettyboo2024 in reply to Sun-flowerwearer]

I was so sad to read your response, my husband too was so fit and healthy, black belt in karate, running marathons, cycling and general huge personality- I am trying to keep his humour up and the love in abundance xxx 😘

[PineEater in reply to Sun-flowerwearer]

Hi, Sun-flowerwearerYour husband's story very clearly describes what is PSP. Unfortunately, there is no cure and almost nil research going on for its cure though lots of researches are going on in other such diseases like Parkinson's disorder etc. Best wishes

[Leosta]

I'm so sorry that you and your husband are in this situation. It's confusing for everyone, you're not alone. You'd just got used to the Parkinson's diagnosis and then wham! it's PSP and everything is going out of control.From reading people's stories it seems that the rapidity of decline depends on the type of PSP. My husband had PSP-RS with FTD symptoms. An initial diagnosis of Parkinson's in 2020 changed to PSP in 2022. Looking back I can see the symptoms started in 2018. He passed away in January this year. His decline in the last 12 months were very rapid.

All I can say is do as much as you can for him, get help where you need to, and make the most of the time you have together.

💚

[Bettyboo2024 in reply to Leosta]

Thank you for sharing this, it must be painful 😥 I myself have very up and down days where I feel “I can do this” but then am so scared of losing my best friend and love since I was 17 whom has been my rock through my breast cancer journey 😫 I love him sooo much x

[Leosta in reply to Bettyboo2024]

Oh bless you. You've been through so much already. You're strong. You can do this. You really can. Sending love and hugs. 🫂

[PineEater in reply to Leosta]

Sorry to learn of your husband's story that clearly describes PSP. Sadly, no cure yet available for PSP and with almost nil research going on, cure for PSP seems far away. Best wishes

[easterncedar]

It is entirely possible that a chest or urinary infection could cause apparent deterioration that might reverse to some real degree once the infection is treated. PSP is highly individual in its progression, I am sorry to say, however, that the trauma of the falls take their own toll. Hold him close.

[Bettyboo2024 in reply to easterncedar]

Thank you so much for your response and we are xxx

[PineEater]

Hi, Bettyboo2024Sorry to learn of your husband's fast declining condition. This is what is called PSP. Unfortunately, there is no cure at the moment and there is almost nil research going on to find a cure for PSP. Lots of researches are going on for other neurodegenerative diseases like Parkinson' disorder but almost none for PSP. Best wishes

[Harshacceptance]

I’m never sure how to open the conversation as it’s a very cruel illness.

I found this forum a few months back and it’s incredible because all the people here understand this, they get it and I think that’s the most important thing - for understanding, compassion and experience.

I’m so glad he got to walk his daughter down the aisle, what a lovely memory.

I sit with memories of my dad despite he is still here.

My dad has CBD however went through the same Parkinson’s then later diagnosed with CBD.

He’s 81 and totally immobile and can do nothing for himself my mum is his primary carer alongside a team of carers as he is looked after from home. He can just about talk.

I saw the progression of your husband and it’s very similar in that my dad was very active 4 yrs ago, playing golf multiple times a week. The falling started and he spent many a time in the back of an ambulance to A&E - we kinda found humour then as he used to get a bandage on his head.

In Oct 23 his mobility started to rapidly decline as he needed a wheelchair albeit could stand and move between seat and chair. Then in Feb 2024 he was rushed to A&E with urinary retention, he was quite ill and catheterised. At that point he declined rapidly and quickly became bed bound.

Make sure that you have a good support network and please do get your GP engaged so you have the right medical team / care team - CHC despite it being a crazy stressful process that is ridiculous given this condition is a god send, it normally happens as a fast track. My dad got it because my parents went into crisis a few weeks after he was catheterised. He was discharged with nothing at all which was disgusting.

You have each other, memories and make sure you get the support of the GP - my parents were very resistant to any help as they didn’t want to be a burden.

[ckb4]

hi!.. I’m sorry to hear this about your husband.. this is a wicked disease.. relentless. Hopefully, you have good long term care for him. If available where he is, speech therapists can help with teaching him how to swallow and eat better for less coughing. Your faith life and support system will be crucial to help you go through this with him. His care at a good long term care facility will help ease your anxiety.