Posts - PSP Association | HealthUnlocked

PSP Association

9,339 members • 11,392 posts

All posts for March 2016

Can't let go

We are now entering day 4, St Patrick's day in the UK and some how dad is still hanging on in. I have no idea how!!!! How much longer can this go on? I've told...

We are now entering day 4, St Patrick's day in the UK and some how dad is still ...

•8 years ago

goodby

hi everyone i am going to leave health check now it has been an amasing journy with you all but i now have to move on your chats advise have been all amasing...

hi everyone i am going to leave health check now it has been an amasing journy w...

•8 years ago

Peaceful

Our amazing dad, lost his fight last Wednesday. He was the strongest, kindest most amazing man we have ever known. It was peaceful and we were all together as...

Our amazing dad, lost his fight last Wednesday. He was the strongest, kindest mo...

•8 years ago

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End of life

It is with deepest heartache that I type this post. Dad has reached his end of life stage and is extremely poorly now. We have everything in place and mam and...

It is with deepest heartache that I type this post. Dad has reached his end of l...

•8 years ago

Please Help - Home care on NHS

I am new to the forum and was advised to order my question on the forum, so I hope someone can help. My mother was diagnosed with PSP about 9 months ago but...

I am new to the forum and was advised to order my question on the forum, so I h...

•8 years ago

PSP conference in New York

This past weekend my husband and I attended the PSP conference in Flushing, New York, sponsored by Curepsp. The first afternoon opened with a reading and...

This past weekend my husband and I attended the PSP conference in Flushing, New ...

•8 years ago

Eating

My mum has suffered with PSP for at least six years now. All of her food is puréed and her liquids are thickened. It's come to the point where everything she...

My mum has suffered with PSP for at least six years now. All of her food is pur...

•8 years ago

Update CHC Funding

I got another call today from CHC ( this was the day they were going to arrange a meeting ) The woman who called said she was calling on behalf of...

I got another call today from CHC ( this was the day they were going to ...

•8 years ago

Kebolissa and Pseudomonas (superbug)

Hi everyone sorry I haven't written Bev had surgery on her butt and is now in the hospital with a infections in her saliva the one is new and hard to get rid...

Hi everyone sorry I haven't written Bev had surgery on her butt and is now in th...

•8 years ago

Entitlement to sitters

Thanks to folk who replied to me.Friday afternoon the care agency phoned to say yes I could use my hours having two sitters.Common sense prevailed for once!...

Thanks to folk who replied to me.Friday afternoon the care agency phoned to say ...

•8 years ago

Senior moment.....another one!

I came in from filling the bird feeder and as soon as I opened the back door realised my darling needed the commode so ran into him, hoisted him from his...

I came in from filling the bird feeder and as soon as I opened the back door rea...

•8 years ago

Meds stopped

Hello all, the decisions was made yesterday to stop all of dads meds. He's struggling to swallow them and we're not entirely sure what he is even gaining from...

Hello all, the decisions was made yesterday to stop all of dads meds. He's strug...

•8 years ago

Thank you all.

Thank you to all who replied to my messages. Unfortunately, some days, or should I say most days my vision is "so off" making it so difficult to type or...

Thank you to all who replied to my messages. Unfortunately, some days, or shoul...

•8 years ago

The end

After my last post 11 days ago 'hate this illnesd' at 57 my father passed away at home with respiratory difficulty. Thanks to everyone who sent messages. In...

After my last post 11 days ago 'hate this illnesd' at 57 my father passed away a...

•8 years ago

Down to the quay

Down to the quay at Topsham this afternoon - a powder blue sky and the warmth of the sun on our faces . V slept and I watched the curlews and godwits...

Down to the quay at Topsham this afternoon - a powder blue sky and the warmth ...

•8 years ago

respite care stopped

My dad has been diagnosed with psp. My mum is his main carer but because his stability is getting worse and keeps falling over, Take a Break (respite care)...

My dad has been diagnosed with psp. My mum is his main carer but because his sta...

•8 years ago

Allocated sitting hours

Can anyone help? I get 208 allocated sitting hours I do not need to fund.Now the care agency and I agree Des needs 2 sitters present.I have lots of hours still...

Can anyone help? I get 208 allocated sitting hours I do not need to fund.Now the...

•8 years ago

Help in enabling me to keep our dog at home

My husband is falling more regularly now. We have a most wonderful dog (a Toller) who is so intelligent and just a fab personality and my saving grace these...

My husband is falling more regularly now. We have a most wonderful dog (a Toller...

•8 years ago

For Christians, some possible comfort and answers

I just wrote this reply to another thread on this forum and thought it could help someone else too so I'm posting it for all to see. QUESTION: Why do bad...

I just wrote this reply to another thread on this forum and thought it could hel...

•8 years ago

Hello my name is Ken Kurose. I am 39 years old taking care of my dad with psp 74 years old.

Where did PSP come from? How did it start? I'm on very frustrating and journey with my dad. I know I'm not alone and many of you are in the same boat as me....

Where did PSP come from? How did it start? I'm on very frustrating and journey ...

•8 years ago

Continuing Healthcare eligibility

Hi all, My father has advanced PSP and we are considering applying for the NHS continuing healthcare package. Has anyone in the UK had any success with this? I...

Hi all, My father has advanced PSP and we are considering applying for the NHS c...

•8 years ago

Home at last!

Hi, just got home from bringing S back from the hospital! Couldn't find anything wrong, so I suppose it was just PSP flexing its muscles! As if we are not...

Hi, just got home from bringing S back from the hospital! Couldn't find anythin...

•8 years ago

Makes grunting sound while eating

Anyone seen this? I remember when my dear daughter was a baby, when drinking her bottle, she'd make a happy little breathing sound. Daddy's sound is a cross...

Anyone seen this? I remember when my dear daughter was a baby, when drinking her...

•8 years ago

Time off Work

I desperately want to spend as much time with dad as I can and I'm considering taking time off work. I work full time so only got to see dad on a night for a...

I desperately want to spend as much time with dad as I can and I'm considering t...

•8 years ago

Fighting death

Crazy how things change, I know it's progressive but I've not been able to keep up.... Dad got another aspiration pneumonia after being home 3 weeks, they...

Crazy how things change, I know it's progressive but I've not been able to keep ...

•8 years ago

My weekend!!!

Hi, had a "lovely" weekend!!!! S woke me up on Saturday morning, managed to get out he was in pain. Gave him some painkillers, hoping that would work....

Hi, had a "lovely" weekend!!!! S woke me up on Saturday morning, managed to ge...

•8 years ago

Mary B.

Hello. I am almost 70 (in one month) live East of Sacramento, CA, USA and was diagnosed with PSP in June 2015, even though I had had multiple symptoms for the...

Hello. I am almost 70 (in one month) live East of Sacramento, CA, USA and was di...

•8 years ago

Infection again

Hi My dad is in late stages of PSP - he acquired an infection again (the last time it was a chest infection, the docs are not sure this time) - I understand...

Hi My dad is in late stages of PSP - he acquired an infection again (the last t...

•8 years ago

PSP v CBS

Thank you all for your messages and support, can anyone tell me what the difference between PSP and CBS is, my husband has CBS and reading through all your...

Thank you all for your messages and support, can anyone tell me what the differe...

•8 years ago

Laughing inappropriately

Does any one else find the psp sufferer they are caring for has this laughing at things that are just not funny. It is driving me to the edge of my patience,...

Does any one else find the psp sufferer they are caring for has this laughing at...

•8 years ago

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