Posts - PSP Association | HealthUnlocked

PSP Association

9,625 members•11,552 posts

All posts for September 2013

Just reaching out

My step-dad was diagnosed with PSP 1 year ago. Before that time, there were various diagnoses including PD. After doing a lot of research on my own, I think...

My step-dad was diagnosed with PSP 1 year ago. Before that time, there were vari...

cdhollingsworth

•11 years ago

27 Replies

Has anyone documented the stages and poss timescales for PSP. Wife just been diagnosed.

snapper

•11 years ago

10 Replies

What are the pain medication people or carers are using to help with PSP and do they work and did the neurologist offer any pain medication?

i thought doing a poll on how many people with psp cbd and parkinson's disease who've had a head trauma in the last say 30 years that for example involved...

i thought doing a poll on how many people with psp cbd and parkinson's disease w...

Hidden

•11 years ago

34 Replies

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Twilight Evening - 5th December 2013

You are invited to a Twilight Evening on Thursday, 5 December 2013 from 5pm - 9pm. This will be an evening of carols, mulled wine and mince pies in the...

You are invited to a Twilight Evening on Thursday, 5 December 2013 from 5pm - 9p...

PSPA_DebbieB

Partner•11 years ago

5 Replies

Hello all, How do you explain to my father high level care is needed now and a Nursing Home is the the next step. And Dad says No. has

An update to my last question, thanks for the replies. I need some help, my Dad is 71 now, has been in Preston Hospital on the Urology ward for a month now...

An update to my last question, thanks for the replies. I need some help, my Dad ...

Honesty37

•11 years ago

7 Replies

Did anyone who now has PSP ever use codeine/other opiates long term for pain/other reason years prior to onset? (ie T3,C2,cough syrup,or?)

From an article I found about opiates and taupathies. Related to Alzheimers, but wondered about PSP...could codeine/opiates cause PSP? Could minocycline be...

From an article I found about opiates and taupathies. Related to Alzheimers, bu...

Susan789

•11 years ago

14 Replies

Would a GP have accurate information about life expectancy of someone with CBD?

Hi everyone, I'm wondering if anyone has any knowledge that could help me. My mum has been suffering from Corticobasal Degeneration for a few years now. She...

Hi everyone, I'm wondering if anyone has any knowledge that could help me. My m...

Jan6

•11 years ago

13 Replies

hi everyone need some advice my sister and me are pulling are hair out this last 10 days,dad had psp about 3 years which in his case is

very progressive, the usual thing eyes,speech,falling can only walk a few steps with help.just wondering if any body going though what we are .HAS HE turned...

very progressive, the usual thing eyes,speech,falling can only walk a few steps ...

mrsfarringdon

•11 years ago

16 Replies

Did you know that your Lasting Power of Attorney for Health and Welfare has no power...

It is possible for your health carers to completely ignore it and the Office of the Public Guardian know this and can or will do nothing about it. They say it...

It is possible for your health carers to completely ignore it and the Office of ...

barbren

•11 years ago

9 Replies

"You say it best when you say nothing at all"

Hi all - Came in from gardening, lay down on the bed for a few minutes' rest, turned on Radio Norfolk - The Country Show in the East of England - and "You say...

Hi all - Came in from gardening, lay down on the bed for a few minutes' rest, tu...

wifemo

•11 years ago

5 Replies

"What's in a name? That which we call a rose,.......

By any other name would smell as sweet" from Romeo and Juliet - (Shakespeare). The meaning seems to be "What matters is what something is, not what it is...

By any other name would smell as sweet" from Romeo and Juliet - (Shakespeare). T...

Hidden

•11 years ago

46 Replies

Another Visit from a well-meaning official. I have a blogged many times on this forum about my husband's aggression - mainly aimed at me -

His low moods, generally apathy and quite often his refusal to accept his limitations in the face of PSP ( this last one at least I cannot deny him). After...

His low moods, generally apathy and quite often his refusal to accept his limita...

dorothy-thompson

•11 years ago

12 Replies

runny nose

My husband has bouts of sneezing and a runny nose when he is eating ,I believe some of it is from not breathing right (He stop breathing )when he is eating....

My husband has bouts of sneezing and a runny nose when he is eating ,I believe ...

deew

•11 years ago

5 Replies

CHRISTMAS CARDS

WHY ARE THEY SO EXPENSIVE - AT THE PSP SHOP ?

shasha

•11 years ago

8 Replies

A brave battle - Dad was the true winner.

On Thursday 12th September 2013 our father finally decided to end the battle against CBD and PSP. He died at home with his family beside him. Although he had...

On Thursday 12th September 2013 our father finally decided to end the battle aga...

Theson

•11 years ago

8 Replies

Hello all, my father has been diagnosed with PSP. We think he's been suffering with it for around 5/6 Years. Any nutrition tips to help us?

He's suffering with constipation and also lack of appetite. He very rarely moves anymore unless for a hospital apt or to use toilet. We are heartbroken and...

He's suffering with constipation and also lack of appetite. He very rarely moves...

Hidden

•11 years ago

40 Replies

First Symptom Survey - Last Comments

About 33 respondents).. Remember that many symptoms are part of the Parkinsonism range and not specific to PSP. Even changes in the nervous system in old age...

About 33 respondents).. Remember that many symptoms are part of the Parkinsonism...

Hidden

•11 years ago

12 Replies

At Birmingham Half Marathon taking place this October I have a dear family member who will be running for PSP

Wishing everyone taking part the very best of luck and hope to inform you later on a successful run.

Wishing everyone taking part the very best of luck and hope to inform you later ...

pollyannajo

•11 years ago

3 Replies

Hello, My dad is 85 and in the end stages of psp. We live in a very rural area so our Hospice healthcare workers rarely have psp patents.

We can't get answers to many questions. New for dad are increased muscles spasms, contractions or tensing up. Not sure what to call them. He has few words that...

We can't get answers to many questions. New for dad are increased muscles spasms...

dbmy3

•11 years ago

34 Replies

Missing my amazing husband

February 15, 2013 I lost the most amazing man I have ever known to PSP. Gary was a wonderful husband and father and the love of my life. He was my best...

February 15, 2013 I lost the most amazing man I have ever known to PSP. Gary wa...

LAWolfe

•11 years ago

9 Replies

Charles A. Fields

After a 9 year battle with P.S.P, last Thursday my precious father took his last breath. His battle is over but ours still remains. Our motto has always been...

After a 9 year battle with P.S.P, last Thursday my precious father took his last...

Kristy4acure

•11 years ago

3 Replies

June Lloyd

My beloved mum passed away on March 9th. She was the strongest, kindest, bravest lady who endured the ravages of PSP with the utmost grace and courage. Words...

My beloved mum passed away on March 9th. She was the strongest, kindest, bravest...

jacq61

•11 years ago

13 Replies

Charles A. Fields

After a 9 year battle with P.S.P, last Thursday my precious father took his breath. His battle is over but ours still remains. Our motto has always been that...

After a 9 year battle with P.S.P, last Thursday my precious father took his brea...

Kristy4acure

•11 years ago

16 Replies

Is PSP hereditary????

We have been told several times that PSP is NOT hereditary but recently more and more people are coming forward and saying they have two family members (blood...

We have been told several times that PSP is NOT hereditary but recently more and...

Hummingbird_

•11 years ago

13 Replies

My husband breathed his last in sleep on 21st august He was diagnosed PSP in 2010 He suffered a lot he was very alert mentally till the end

he suffered more bcos he was unable to swallow'see 'walk etc eyes were centre fixed for nearly 2 months it was very pathetic he was my lovely companion for 37...

he suffered more bcos he was unable to swallow'see 'walk etc eyes were centre fi...

LALITHA

•11 years ago

9 Replies

Another Heartbreaking Goodbye....

My lovely Mum passed away yesterday, after being rushed into hospital with breathing difficulties last Saturday. The hospital followed mums wishes as set out...

My lovely Mum passed away yesterday, after being rushed into hospital with breat...

JoJo-K

•11 years ago

13 Replies

First Symptom Survey Comment by Strelley

Again, thank you everyone for replying to my survey. I trust you have read the experience of others and, like me, found them to be more than just clinical...

Again, thank you everyone for replying to my survey. I trust you have read the e...

Hidden

•11 years ago

13 Replies

Old Dogs and Old Men

Her heavy hips remind Angel Girl not to rise needlessly, so she lies on one side with her front paws splayed around her water bowl, lapping the cool liquid...

Her heavy hips remind Angel Girl not to rise needlessly, so she lies on one side...

CarlaL48

•11 years ago

14 Replies

Touting for business. I recently asked for some advice re shower ramps and got some replies but I also got a blog from a company with

Their details and website telling me they could help. This is not what this site is for and I object to this. If my fellow bloggers want to give me this...

Their details and website telling me they could help. This is not what this sit...

dorothy-thompson

•11 years ago

1 Reply

Possible First Symptom of PSP - Survey

I am interested in what PSP (only) sufferers or carers remember of the first symptom. Many descriptions of PSP symptoms seem to be generically written, and...

I am interested in what PSP (only) sufferers or carers remember of the first sy...

Hidden

•11 years ago

57 Replies

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Posts - PSP Association | HealthUnlocked

PSP Association

All posts for September 2013

Just reaching out

Has anyone documented the stages and poss timescales for PSP. Wife just been diagnosed.

What are the pain medication people or carers are using to help with PSP and do they work and did the neurologist offer any pain medication?

Twilight Evening - 5th December 2013

Hello all, How do you explain to my father high level care is needed now and a Nursing Home is the the next step. And Dad says No. has

Did anyone who now has PSP ever use codeine/other opiates long term for pain/other reason years prior to onset? (ie T3,C2,cough syrup,or?)

Would a GP have accurate information about life expectancy of someone with CBD?

hi everyone need some advice my sister and me are pulling are hair out this last 10 days,dad had psp about 3 years which in his case is

Did you know that your Lasting Power of Attorney for Health and Welfare has no power...

"You say it best when you say nothing at all"

"What's in a name? That which we call a rose,.......

Another Visit from a well-meaning official. I have a blogged many times on this forum about my husband's aggression - mainly aimed at me -

runny nose

CHRISTMAS CARDS

A brave battle - Dad was the true winner.

Hello all, my father has been diagnosed with PSP. We think he's been suffering with it for around 5/6 Years. Any nutrition tips to help us?

First Symptom Survey - Last Comments

At Birmingham Half Marathon taking place this October I have a dear family member who will be running for PSP

Hello, My dad is 85 and in the end stages of psp. We live in a very rural area so our Hospice healthcare workers rarely have psp patents.

Missing my amazing husband

Charles A. Fields

June Lloyd

Charles A. Fields

Is PSP hereditary????

My husband breathed his last in sleep on 21st august He was diagnosed PSP in 2010 He suffered a lot he was very alert mentally till the end

Another Heartbreaking Goodbye....

First Symptom Survey Comment by Strelley

Old Dogs and Old Men

Touting for business. I recently asked for some advice re shower ramps and got some replies but I also got a blog from a company with

Possible First Symptom of PSP - Survey

Search posts

Latest poll

What are your main concerns as a carer?

Topics

Archive