Althea -c

[Althea-c]

My husband has had PSP for about 5 years.

Those of you who are caring for PSP loved ones please give me an indication of what happens in the late stages. So I can compare.

[Julieandrog]

Hi

From my experience these 'stages' are really a bit of a guide as to how the illness may progress but each individual comes to the game with their own journey. It depends on age, previous medical history and age when it first develops. Also every infection and fall affects the progression.

From Wednesday Rog has cascaded down , much of his speech went overnight, but when you read other posts their loved ones have picked up as has Rog in the past.

The words said to us by the neurologist on diagnosis was it is progressive but not predictable, I think that is the only certainty.

The question we all want to ask me included is how long will this illness have to be endured by our wives,husbands, parents and loved ones .

I am generally a positive person, so just take every day.

Julie x

[Althea-c in reply to Julieandrog]

Thank you Julie, unpredictable is probably the KEY word. 💛

[aliciamq in reply to Julieandrog]

From Monday my husband has gone from ' can hardly walk' to 'holy smokes he can hardly walk!!!'

[Althea-c in reply to aliciamq]

💛🙏 wish I had time to write

[am2015]

I think Julie has said it all. My mum has gone from talking, walking with a Zimmer frame, eating by herself to complete loss of speech, very poor eyesight, bedbound, catheter and finally a peg, all in the about 16 months. It's horrible to watch and the worse thing is that the timeframe is so short. Everyone is different, my mum is probably in her 7th year, diagnosed 18 months ago.

[77777 in reply to am2015]

Just lost my mum after 7 years of hell. We couldnt communicate at all with her in the last few weeks.It was as though she was shutting down.Absolutely heartbreaking.

[Althea-c in reply to 77777]

💛🙏

[Althea-c in reply to am2015]

💛🙏

[Jdjdjd]

My husband has CBD, very similar symptoms and same prognosis as PSP, everyone has their own pace it seems, and I agree nothing is predictable, Ian cannot walk or feed himself and is also double incontinent, but he talks well, has capacity and understands all that is going on, this is what is the nightmare for him, knowing he has to rely on carers for his basic needs, he was 62 when first diagnosed and is now 74, had a bad case of sepsis flare up overnight Thursday, so in hospital, should be home today with any luck,

Are you in the U.K., there are some great support groups around, check out the website calendar, it is also a good idea to get the OT department on board early, along with parkinsons nurse, I waited too long, and then felt desperate, but once I had the right equipment it made life easier, a mini standing hoistis invaluable, for when they need help getting out of bed or chair

Good luck with it all and keep in touch

Good wishes Janet

[Althea-c in reply to Jdjdjd]

💛🙏

[jillannf6]

IA AGR EE IWTH WHAT=S BEEN SAID

LOL JILL]

XXXXX

[Brenive in reply to jillannf6]

How are you jill nice to see your still answering the posts....Brenda. .x

[Althea-c in reply to jillannf6]

💛🙏

[Althea-c]

My darling husband is very angry. He is lashing out at anyone who comes near him. Even at me sometimes.

He is on Carbilev and memor. I need something to calm him. Any suggestions ???

[Hidden]

From what I can tell there are no answers and it's understandable that it's so difficult to diagnose in the first place as no 2 people seem to experience the same effects in the same way & at the same time in the disease's progression. My mum 1st showed symptoms of CBD in2009/10, but took till 2014 to diagnose. She has been unable to use her right hand from early on, had visual & spacial awareness issues & struggled to concentrate on things. Stiffness spread then through her arm & down right leg and she's been wheelchair bound now totally for 18 months & doubly incontinent too. She's been unable to talk now at all for a year, her concentration span is nil & whilst her communication has been limited for about 3 years, up to the last couple of weeks she's totally totally understood what others are talking about & has retained a wicked sense of humour & an infectious laugh . Swallow & gag reflex majorly impaired for last 6 months & a peg was inserted a month ago because feeding but more so fluid intake was really challenging, leading to many bladder infections & a lot of weight loss. It's always felt that mum would have a stable 6-9 months, then something would decline rapidly, before that state becoming the new norm for a while. Unfortunately the peg has led to complications with infection & she's now contracted pneumonia & seems to be going down hill fast, sleeping almost constantly. I fear that this is now the final stage. I've unfortunately had to watch my dad pass away 15 years ago of a brain tumour & mum seems to be heading the same way. The body is just slowing down & whilst her blood pressure, heart rate etc all remain strong I think she's just had enough & she's loosing her fight. Appreciate this is a long winded answer to your question, but hope it helps. There seem to be so many issues & effects of CBD/PSP that you can't pigeon hole how someone is.

[Althea-c in reply to Hidden]

🙏💛