Posts - PSP Association | HealthUnlocked

PSP Association

9,266 members • 11,356 posts

All posts for September 2016

CHC advice please.

Hi I am keen to find out if anyone receiving CHC gets an annual review of their funding using a Decision Support Tool. We have just had a telephone call from...

Hi I am keen to find out if anyone receiving CHC gets an annual review of their ...

•8 years ago

Dizziness upon arising from bed

Do all of you have extreme dizziness when arising? It diminishes as the day progresses as does the gait problems. I never see any comments about dizziness so I...

Do all of you have extreme dizziness when arising? It diminishes as the day prog...

•8 years ago

Social Care and Social Services - Save your receipts. Even if you don't receive it.

If you are on means tested Social Care keep a copy of all of your expenses and receipts for conversions equipment and care costs. This year a cap on personal...

If you are on means tested Social Care keep a copy of all of your expenses and r...

•8 years ago

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Nanna B, will the tooth fairy know I'm here?

That was the greeting I received when I let our 6 year old grandson and his 9 year old brother in this morning. No "Hello". His tooth came out in his home...

That was the greeting I received when I let our 6 year old grandson and his 9 ye...

•8 years ago

A poem about PSP

I am far from a poet but was playing around and wrote this, I am sure you will relate to at least some parts of it (sorry for the poor rhyming skills lol) x...

I am far from a poet but was playing around and wrote this, I am sure you will r...

•8 years ago

I nearly killed David tonight

I made dinner as I do every night, this evening it was Chillie Con Carne as David is good with curry/Chillie/sweet and sour type meals as long as I feed him....

I made dinner as I do every night, this evening it was Chillie Con Carne as Davi...

•8 years ago

Feeling Bleeeeurgh!!

I am as always full of admiration for everyone on this site surviving this horrible disease or caring for someone. I am sure you can all identify that some...

I am as always full of admiration for everyone on this site surviving this horri...

•8 years ago

Muscle memory

Hi there. I don't often post but i read all the time. I've two questions that I hope someone may be able to answer for me. Firstly, is muscle memory a common...

Hi there. I don't often post but i read all the time. I've two questions that I ...

•8 years ago

Hi indroducing myself

Hi I'm Clare my dad has cbd, it's the saddest thing as you all know to watch your beloved strong dad curl up to this awful disease! He's in about 5 years after...

Hi I'm Clare my dad has cbd, it's the saddest thing as you all know to watch you...

•8 years ago

CHC Funding

Well I heard this week!The panel of strangers have read the detailed report of the professionals who knew Des and decided to down grade his needs in four of...

Well I heard this week!The panel of strangers have read the detailed report of t...

•8 years ago

Language change

Why has every conversation changed to Spanish? I only speak English and am so frustrated. PSP is bad enough without being frustrated by a language too.

Why has every conversation changed to Spanish? I only speak English and am so f...

•8 years ago

Somebody please help me!

I just don't know what to do, Keith has been standing in the toilet for two and a half hours now, nearly naked, won't sit down, won't let me help him, tried to...

I just don't know what to do, Keith has been standing in the toilet for two and ...

•8 years ago

In a nightmare

6 WEEKS OF HELL. or is it more. He fell and broke his femur. 1 week in the hospital. They said he is a very high risk patient to operate on, heart issues,...

6 WEEKS OF HELL. or is it more. He fell and broke his femur. 1 week in the hospi...

•8 years ago

Here we go again

Well George has been up since 10.30 agitated, so I thought it might be a urine infection, he was breathing funny, phoned 111 explained everything, doctor rang...

Well George has been up since 10.30 agitated, so I thought it might be a urine i...

Yvonneandgeorge

•8 years ago

Endless skills as always!

We carers have many skills.Mine have been veterinary this week too ha ha.One spaniel had a punctured tongue from a stick,so daily antibiotics wrapped in...

We carers have many skills.Mine have been veterinary this week too ha ha.One spa...

•8 years ago

ASPIRATION PNEUMONIA

Hello everyone! My mom was diagnosed with PSP 6 years ago. She has the usual symptoms such as stiffening of the neck, can't move her eyes and having a hard...

Hello everyone! My mom was diagnosed with PSP 6 years ago. She has the usual sym...

•8 years ago

Social worker

Some time ago I had a carers assessment and my husband was assessed for his needs and we undertook a financial assessment. The outcome was I was granted 3....

Some time ago I had a carers assessment and my husband was assessed for his need...

•8 years ago

What next?

Have been very busy sorting out several domestic problems, fridge freezer breakdown, plumber who made a minor situation worse and we had water flooding the...

Have been very busy sorting out several domestic problems, fridge freezer breakd...

•8 years ago

Thanks everyone!

I just wanted to say thanks everyone for the many responses I had to my recent post, Keith is now home from hospital, although he did pull out a second...

I just wanted to say thanks everyone for the many responses I had to my recent p...

•8 years ago

Devastated

Just when I am feeling just a touch happier,the hospice say he's had his 12 visits, talk about pull the blanket from under you. Where do I go now xxx

Just when I am feeling just a touch happier,the hospice say he's had his 12 visi...

•8 years ago

At Last

We had our CHC assessment yesterday . It was done by a nurse sent out by CHC themselves - new system . Well we scored two "severes " several "...

We had our CHC assessment yesterday . It was done by a nurse sent out by C...

•8 years ago

Can anyone relate to these feelings?

As my father's daughter and as his carer, I feel so inadequate and believe me, I AM inadequate. I don't know what's best to help my Dad. For instance, he's...

As my father's daughter and as his carer, I feel so inadequate and believe me, I...

•8 years ago

New PSP Diagnosis

Hi, After 3 years living with a PD diagnosis, my husband's new dr believes he has PSP. I have read some info about this, but wonder how a definite diagnosis...

Hi, After 3 years living with a PD diagnosis, my husband's new dr believes he ha...

•8 years ago

Warning rant alert

Having a pretty crap time at minute, never felt so low and struggling to snap out of it. Usually I can or should I say I have to got no choice 😀 I seem to...

Having a pretty crap time at minute, never felt so low and struggling to snap ou...

•8 years ago

Hey ShaSha, thanks for your update.

Well darlin, I am sorry that they found anything, be it MSA or PSP! You know you have a family here, and always will. Stay connected and if you can stay as...

Well darlin, I am sorry that they found anything, be it MSA or PSP! You know you...

•8 years ago

Be the first to reply

A word to say. THANK YOU ALL💘

Well i have been on that site for 9 days now.. i have to admit that you all have changed my life to the best in a very short duration my thoughts to my father...

Well i have been on that site for 9 days now.. i have to admit that you all have...

•8 years ago

Can you stop rabbiting?

Dad's speech is getting worse, a lot of the time he doesn't talk because he can't be bothered (on a recent trip to hospital they were surprised to learn that...

Dad's speech is getting worse, a lot of the time he doesn't talk because he can'...

•8 years ago

Surviving aspiration pneumonia. Possible?

Has anyone on here loved one (or self) survived aspiration pneumonia? Husband just diagnosed with it in hospital and is very ill. Is this a death sentence? I...

Has anyone on here loved one (or self) survived aspiration pneumonia? Husband ju...

•8 years ago

PANT LESS IN ALBERTA

I finally had a visit from our OT and a student. I have also been wanting g some one to show me a hygiene sling as I can not get his pants up and down with the...

I finally had a visit from our OT and a student. I have also been wanting g some...

•8 years ago

feeling warm

hi saw this in a welsh church when on respite a few weeks ago thought i would share it , made me feel a little happier! For what they never told me of and...

hi saw this in a welsh church when on respite a few weeks ago thought i would sh...

•8 years ago

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