Posts - PSP Association | HealthUnlocked

PSP Association

9,266 members • 11,356 posts

All posts for July 2011

I need to know what the care support is like in Hertfordshire(near Royston).My husband has just been diagnosed and we need to move house,

We have been 3-4 years waiting for a diagnosis and he is going downhill physically ,mobility and his eyes are the worst. It is a huge thing to move away...

We have been 3-4 years waiting for a diagnosis and he is going downhill physical...

Pinda

•13 years ago

3 Replies

PEG tube - our experience

I thought I would write a quick blog about our experience with dad having a PEG tube fitted as there have been quite a few blogs on it lately. Dad was...

I thought I would write a quick blog about our experience with dad having a PEG ...

Louise-Alabaster

•13 years ago

13 Replies

Losing a loved one to PSP

So we talk about our loved ones new symtoms and how to take care of them. Do we ever speak about what is truly bothering us. What is truly bothering me is...

So we talk about our loved ones new symtoms and how to take care of them. Do we...

judy1962

•13 years ago

41 Replies

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My Mum, Me and PSP

Heartbreaking Cruel Illness ........ Mum was diagnose 6 years ago with PSP although I beleave she has had this illness for around 10 years now. We were first...

Heartbreaking Cruel Illness ........ Mum was diagnose 6 years ago with PSP altho...

Back

•13 years ago

6 Replies

How are you?

I have been working at a conference this week and have met a lot of people that I haven't seen for a while. As part of the normal courtesies they ask "How are...

I have been working at a conference this week and have met a lot of people that ...

hmfsli

•13 years ago

4 Replies

What are the pros and cons of PEG my husband's neuro would like him to have one placed.

judy1962

•13 years ago

13 Replies

Uncontrollable laughter

Does anyone with PSP get bouts of uncontrollable laughter? My husband does this usually when things are going wrong.e.g His balance is going when I'm trying to...

Does anyone with PSP get bouts of uncontrollable laughter? My husband does this ...

HGE2844

•13 years ago

12 Replies

Someone else lost to CBD

I discovered this week that a lady I have known for more than 60 years has died following 8 years suffereing with CBD. We were pals as kids and when we married...

I discovered this week that a lady I have known for more than 60 years has died ...

SuzieQ

•13 years ago

13 Replies

any recipes please for soft dishes

My husband has P.S.P. and is struggling to eat. He coughs when he eats sometimes worse than others. He is difinately better with food with lots of gravy or...

My husband has P.S.P. and is struggling to eat. He coughs when he eats sometime...

alfredlake

•13 years ago

6 Replies

Care Home

Husband has arrived at nursing care home, he was upset and disoriantated, one glimmer of hope i felt was when i was told that members of the staff were...

Husband has arrived at nursing care home, he was upset and disoriantated, one gl...

kay1

•13 years ago

9 Replies

The Summer Raffle is here...

...and it's time to start selling your raffle tickets to be in with a chance to win the top prize of £500! Tickets are £1 each and there are three prizes to...

...and it's time to start selling your raffle tickets to be in with a chance to ...

PSPA_HelenP

•13 years ago

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PSP in common but such varying difficulties.

I am waiting for my husband to be transferred from hospital to nursing care home. Hadn't even entered out heads ten weeks ago, we coped with the irritating...

I am waiting for my husband to be transferred from hospital to nursing care home...

kay1

•13 years ago

6 Replies

How do I get Dad on the Davenutide trial?

Is it through the GP? (Giggling a bit as Dads name is Dave... :) )

AmyT

•13 years ago

13 Replies

My husband has just been prescribed Seroquel for hallucinations and night terrors. Has anyone used this drug in PSP?

judy1962

•13 years ago

5 Replies

Are your doctors trying Botox injections to reduce excessive salivation?

Annette-in-Colorado

•13 years ago

12 Replies

Does anyone have advice to help with runny and irritable eyes?

Victoriab

•13 years ago

7 Replies

My Blog - The Diary of a Daughter and Carer - Hope Vs Reality

Everyone has it don't they? A point or phase in your life when you feel like you are just waiting for something to happen. My list of things waiting to happen...

Everyone has it don't they? A point or phase in your life when you feel like you...

AmyT

•13 years ago

13 Replies

What causes PSP sufferers to cough so much?

SuzieQ

•13 years ago

6 Replies

Newcomer

Hi my name is Marie i live in dublin my husband has CBD and can no longer do anything for himself but can still smile it is such a cruel illness

Hi my name is Marie i live in dublin my husband has CBD and can no longer do any...

maryelezibeth

•13 years ago

3 Replies

Ripples

I became very aware of the "ripple effect" that PSP has on the family and friends of those who are suffering from this cruel disease. Mum is the centre of our...

I became very aware of the "ripple effect" that PSP has on the family and friend...

Kathy

•13 years ago

2 Replies

Is there a PSP Association in New York City/

edmee

•13 years ago

2 Replies

Ann Brogan

My mum died this week, 4 years after being diagnosed with PSP. She'd spent the last 2 years in a nursing home. She died peacefully and pain free of pneumonia...

My mum died this week, 4 years after being diagnosed with PSP. She'd spent the l...

Fiona_McL

•13 years ago

16 Replies

is there any foundation for PSP here in the Philippines?

I would like to know if Philippines do have hospices like the ones in UK and America where we could seek help.

I would like to know if Philippines do have hospices like the ones in UK and Ame...

pame

•13 years ago

2 Replies

Contact PSP New Zealand

Does any one know how I can contact PSP New Zealand,as we are going there for a visit with our daughter and would like to know if they could help with a...

Does any one know how I can contact PSP New Zealand,as we are going there for a...

LindanTerry

•13 years ago

8 Replies

how do you categorize the stages of PSP? my father is on a tube feeding already. very much bed-ridden...

pame

•13 years ago

13 Replies

is bedsore very common with psp patients?

my father is now suffering from a very bad bedsore, now that he is on a bedridden stage of psp. he already underwent to PEG procedure.

my father is now suffering from a very bad bedsore, now that he is on a bedridde...

pame

•13 years ago

6 Replies

Motor Vehicle Assessment

Hi, I need some advice regarding motor vehicle assessments for my dad. My mum received a form from the Queen Elizabeth Foundation for Disabled People to fill...

Hi, I need some advice regarding motor vehicle assessments for my dad. My mum ...

Faiza

•13 years ago

2 Replies

What have you found is the hardest thing to deal with when caring for someone with/ living with PSP?

My dad was diagnosed a few years ago, and I have found the change in behaviour very hard to deal with. He fidgets a lot, and is extremely impatient, and he is...

My dad was diagnosed a few years ago, and I have found the change in behaviour v...

mlr82

•13 years ago

43 Replies

Speech

Hi folks, I am new to this site and just saying hello. I will also add that I am so sorry that each of you has had the misfortune to need to visit this site;...

Hi folks, I am new to this site and just saying hello. I will also add that I am...

Hidden

•13 years ago

14 Replies

paranoia re fallimg forwards do others have the same problem?

i always fall fwds and am paranoid (especially in the wet weather) of falling fwds (not backwards as the literature tends ot say for psp sufferers my feet...

i always fall fwds and am paranoid (especially in the wet weather) of falling fw...

jillannf6

•13 years ago

4 Replies

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Posts - PSP Association | HealthUnlocked

PSP Association

All posts for July 2011

I need to know what the care support is like in Hertfordshire(near Royston).My husband has just been diagnosed and we need to move house,

PEG tube - our experience

Losing a loved one to PSP

My Mum, Me and PSP

How are you?

What are the pros and cons of PEG my husband's neuro would like him to have one placed.

Uncontrollable laughter

Someone else lost to CBD

any recipes please for soft dishes

Care Home

The Summer Raffle is here...

PSP in common but such varying difficulties.

How do I get Dad on the Davenutide trial?

My husband has just been prescribed Seroquel for hallucinations and night terrors. Has anyone used this drug in PSP?

Are your doctors trying Botox injections to reduce excessive salivation?

Does anyone have advice to help with runny and irritable eyes?

My Blog - The Diary of a Daughter and Carer - Hope Vs Reality

What causes PSP sufferers to cough so much?

Newcomer

Ripples

Is there a PSP Association in New York City/

Ann Brogan

is there any foundation for PSP here in the Philippines?

Contact PSP New Zealand

how do you categorize the stages of PSP? my father is on a tube feeding already. very much bed-ridden...

is bedsore very common with psp patients?

Motor Vehicle Assessment

What have you found is the hardest thing to deal with when caring for someone with/ living with PSP?

Speech

paranoia re fallimg forwards do others have the same problem?

Search posts

Latest poll

What are your main concerns as a carer?

Topics

Archive