Posts - PSP Association | HealthUnlocked

PSP Association

9,626 members•11,552 posts

All posts for November 2017

Told dad dead by weekend

Dad very ill. Off legs weds. Dr said lucky if he gets to w.end. but still here. Have they panicked us too soon. Told he was dying. I think it's the next...

Dad very ill. Off legs weds. Dr said lucky if he gets to w.end. but still here....

•7 years ago

Canary Islands

We are considering a short holiday on one of the Canary Islands early next year for a much-needed recharge of our batteries after a difficult year. Although we...

We are considering a short holiday on one of the Canary Islands early next year ...

•7 years ago

Things are going well

Hi folks I'm rushed off my feet so this is just a quick post to say thank you for all of the support and advice and, that things are going well. The Nursing...

Hi folks I'm rushed off my feet so this is just a quick post to say thank you fo...

•7 years ago

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Where we are now..

I've been away from here for a while. If you read my blog you will know I'd moved in with my Dad after an acute episode. It was never something I could do...

I've been away from here for a while. If you read my blog you will know I'd move...

•7 years ago

Why this website is so helpful

This morning Larry was have a very hard time with swallowing. He was coughing and choking on his saliva. Going into his room he was also trying to pee in a...

This morning Larry was have a very hard time with swallowing. He was coughing an...

•7 years ago

Another Move

A room has become available in the Home that was our first choice. It is a Nursing Home, many of the staff have worked at our local hospice. There are four...

A room has become available in the Home that was our first choice. It is a Nursi...

•7 years ago

Confused, guilty and bereft

Charles went to Emergency Room and they found nothing. His bodily organs are ok, and no UTI. While there he was confused and I had not slept for four......

Charles went to Emergency Room and they found nothing. His bodily organs are ok...

•7 years ago

4 weeks since I wrote.

Barry is the same as he was 4 weeks ago. I am absolutely heartbroken. Althea

Barry is the same as he was 4 weeks ago. I am absolutely heartbroken. Althea

•7 years ago

Brain tissue donation

I would appreciate some information from anyone who set up for tissue donation. My husband is at late stage PSP and I would like to be ready to donate tissue....

I would appreciate some information from anyone who set up for tissue donation. ...

•7 years ago

Lost

Good evening, I have only just found this site and I am lost. My darling Husband has seen 2 Specialists now, the 1st one diagnosed Parkinson Disease and then...

Good evening, I have only just found this site and I am lost. My darling Husband...

•7 years ago

pain in hands

Sorry if this has already been asked but no time to search...my dad's left hand has been gradually twisting up and to a closed fist. My mum tried to gently...

Sorry if this has already been asked but no time to search...my dad's left hand ...

•7 years ago

Hair washing & sleeping alone

My husband has great hair, but I am having a hard time washing it. He seems to be unable to tilt his head back at all. I tried a plastic funnel that goes...

My husband has great hair, but I am having a hard time washing it. He seems to ...

•7 years ago

Contortions with CBD

I haven't posted in a while but my mom is now entering another stage of this horrible CBD. She is starting to contort and I don't know what to do to prevent or...

I haven't posted in a while but my mom is now entering another stage of this hor...

•7 years ago

Don't know what to do

My husband was diagnosed with Cortical basal degeneration this past August after suffering with left sided issues for 2 years. He was at first diagnosed with a...

My husband was diagnosed with Cortical basal degeneration this past August after...

•7 years ago

First my Nanna, now my Grandad. Can't believe it.

I can't believe it, my nan died 3 weeks ago from CBD and now my Grandad has died. Had a Heart attack. Got airlifted to a hospital and he died whilst I was...

I can't believe it, my nan died 3 weeks ago from CBD and now my Grandad has died...

•7 years ago

PSP and "freezing"? PSP in Africa

Hi, my dad has just been diagnosed with PSP. He lives in Zimbabwe. (anyone else out there?) I don't think PSP is so well recognised in Africa. He was...

Hi, my dad has just been diagnosed with PSP. He lives in Zimbabwe. (anyone els...

•7 years ago

YouTube link for Doing What I Can

Lets see if this works. Please help me get this outside the limits of this groups. https://www.youtube.com/watch?v=Mf8--hjguqs&t=867s

Lets see if this works. Please help me get this outside the limits of this grou...

•7 years ago

Good recipes for dysphagia?

Hi, I was just wondering if anyone had good recommendations for recipes for people with PSP. My mum's diet is becoming more restricting due to coughing and...

Hi, I was just wondering if anyone had good recommendations for recipes for peo...

•7 years ago

Why is it so hard to find good care

Hi all I need to let off some steam before I go insane. Since February we have employed PAs via a direct payment as every agency last year quit the package as...

Hi all I need to let off some steam before I go insane. Since February we have ...

•7 years ago

Doing what I can with an uncertain future

Months ago I posted that I had spent 26 days in the ICU with aspiration pneumonia. I was told it would return since I continue to aspirate. Coupled with that I...

Months ago I posted that I had spent 26 days in the ICU with aspiration pneumoni...

•7 years ago

A thought.........

I have realized that in a strange way I am lucky to have CBD and not PSP. Because I live alone I feel it would be impossible to stay mobile if I were to suffer...

I have realized that in a strange way I am lucky to have CBD and not PSP. Becaus...

•7 years ago

Crying

Does anyone experience their psp loved one is crying and moaning a lot? It is often not pain related, putting my mom in a wheelchair and walking seems to calm...

Does anyone experience their psp loved one is crying and moaning a lot? It is o...

•7 years ago

He’s passed

Barry passed away on Friday 3rd November at 11.45. Through all of our 41 years together it has got to have been the hardest 2 months. I was unable to care for...

Barry passed away on Friday 3rd November at 11.45. Through all of our 41 years t...

•7 years ago

CHC

Hi all, my dad had a visit from the Macmillan nurse yesterday. In conversation, it came up about the battle we'd had with Staffordshire CCG to get CHC after...

Hi all, my dad had a visit from the Macmillan nurse yesterday. In conversation, ...

•7 years ago

CHC

Morning on this very rainy day! Just received the letter from CHC following yearly review , we got it! Can breathe for another year , maybe I will sleep better...

Morning on this very rainy day! Just received the letter from CHC following year...

•7 years ago

Just joined, scared about what's coming

My dad has PSP, he and mum are moving to be near me, he can still walk, eat and talk a bit. Looking for other families near me (Merseyside) for mutual help and...

My dad has PSP, he and mum are moving to be near me, he can still walk, eat and ...

•7 years ago

New CurePSP You Tube videos

These are from the 2017 Midwest Family conference. I found the one with the dentist most helpful....

These are from the 2017 Midwest Family conference. I found the one with the den...

•7 years ago

This disease is so cruel

Hi everyone, I haven't written on here for some time as I have struggled to care for my husband. Les is now receiving palliative care in hospital after yet...

Hi everyone, I haven't written on here for some time as I have struggled to care...

•7 years ago

Tough time coping with cognition

HI, I've not posted here before so I'll briefly introduce myself. Skip to the third paragraph for my actual issue I could do with advice on. My mum - who...

HI, I've not posted here before so I'll briefly introduce myself. Skip to the t...

•7 years ago

Christmas went up this morning.

As Auntie Mame said: If we're going to have Christmas, let's have it all around. Norah, lto! Come in, please! Yes, Missy Dennis? - Merry Christmas, everyone! -...

As Auntie Mame said: If we're going to have Christmas, let's have it all around....

•7 years ago

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