Posts - PSP Association | HealthUnlocked

PSP Association

9,266 members • 11,356 posts

All posts for June 2014

Have you seen this inspiring utility ? http://www.bbc.co.uk/news/technology-28041743

nigelvaughan

•10 years ago

4 Replies

Hi my uncle was diagnosed with cbd around two years ago and has recently been admitted to hospital after a fall and with a uti. My Aunty

Thinks he had deteriorated a lot since being in hospital. ie mobility a lot worse, speech and swallowing etc. Could this be him nearing the end.

Thinks he had deteriorated a lot since being in hospital. ie mobility a lot wor...

Hilary1971

•10 years ago

6 Replies

Is this normal progression?

2864

•10 years ago

1 Reply

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Hi there, Just letting you all know that this terrible disease has claimed another fighter. My husband Richard passed away last Wednesday.

He had pneumonia that was not responding to antibiotics and made the brave decision that he'd had enough. He lasted five days with no input other than...

He had pneumonia that was not responding to antibiotics and made the brave decis...

Short1

•10 years ago

14 Replies

Daytime pump peg feeding versus overnight?

Mum recently been moved from four daily boluspeg feeds to overnight pump feeding as she was having terrible bouts of diarrhoea and abdo pain and they thought...

Mum recently been moved from four daily boluspeg feeds to overnight pump feeding...

Lovelyliverbird

•10 years ago

5 Replies

Why does it cost so much to die?

My husband has always said he wanted an autopsy when he died as there are so many things wrong with him. Found out , just that by itself is $1800. Basic...

My husband has always said he wanted an autopsy when he died as there are so man...

Yoyo53

•10 years ago

6 Replies

Ever hear of the PSP "road"?

I have an analogy I use to describe PSP patients and caregivers. I call it the PSP "road". I found that the PSP "road" has many twists and bends, pot holes,...

I have an analogy I use to describe PSP patients and caregivers. I call it the P...

jimandsharynp

•10 years ago

34 Replies

Turny Orbit front passenger OR drivers seat, plus hoist Suit anyone with Mobility Issues.

I bought a Turny Orbit electrically operated seat along with a 100Kg Lift hoist to put my husband's wheelchair into the boot of my car. I paid almost £4000 a...

I bought a Turny Orbit electrically operated seat along with a 100Kg Lift hoist ...

magzelliott48

•10 years ago

2 Replies

How long does someone have left once they quit eating and drinking?

Yoyo53

•10 years ago

13 Replies

Hi again

Hi. I have not been on here for a while. Dad has recovered from his heart surgery and is back at work 3days a week. Mum is much more tired, and has bouts of...

Hi. I have not been on here for a while. Dad has recovered from his heart surger...

lindsey48

•10 years ago

4 Replies

Subdural bleed

On Thursday 6/5 my dad took a hard fall at the nursing home. By Sunday 6/8 we were transferring him due to a positive CT showing subdural bleed. He was...

On Thursday 6/5 my dad took a hard fall at the nursing home. By Sunday 6/8 we we...

Charliesyoungest

•10 years ago

4 Replies

Neurology, bottom of the heap!

Hi, just come back from S's latest visit to the Neurologist. It was in our brand new hospital, just being finished here in the SW of England. What fun I...

Hi, just come back from S's latest visit to the Neurologist. It was in our bran...

Heady

•10 years ago

13 Replies

How meaningful can you make your loved one's memory?

At my beloved wife Sharyn's Celebration of Life service there were readings of poems, scriptures, a pastors message and this pictorial video presentation....

At my beloved wife Sharyn's Celebration of Life service there were readings of p...

jimandsharynp

•10 years ago

20 Replies

Have you counted your PSP BLESSINGS?

In a past posting I mentioned the blessings of PSP or GIFTS of PSP. I started a list of symptoms and things that my lovely wife Sharyn did NOT have to endure...

In a past posting I mentioned the blessings of PSP or GIFTS of PSP. I started a...

jimandsharynp

•10 years ago

22 Replies

Have you ever thought about this?

I hope none of you will allow PSP to define you. My Sharyn would not let it define her in any way. It is easy for patient or caregiver to get in the mode...

I hope none of you will allow PSP to define you. My Sharyn would not let it def...

jimandsharynp

•10 years ago

13 Replies

Why do we care so much about diagnosis once we rule out the things we can do something about (tumor, stroke, heart/arteries etc.)?

I have wondered why I spent so much time arguing with the doctors about diagnosis. Now 8 years later with no treatment that actually helps how did I benefit...

I have wondered why I spent so much time arguing with the doctors about diagnosi...

zjillian

•10 years ago

13 Replies

What about being a passenger?

Does your person with PSP have difficulties being a passenger in a car? Do they constantly feel like you are driving too fast? Are the images coming at them...

Does your person with PSP have difficulties being a passenger in a car? Do they...

mcfly

•10 years ago

16 Replies

Has anyone experienced their loved ones developing Jaundice during the progression of the PSP? If so, what did they say the cause was?

Hidden

•10 years ago

2 Replies

Always looking for ways to achieve early differential diagnosis.....

The following appeared in Medscape this week as a "Hot Topic in Neurology". If we can make an early diagnosis of PSP (etc), then assessing research treatments...

The following appeared in Medscape this week as a "Hot Topic in Neurology". If w...

Hidden

•10 years ago

14 Replies

Miss you mum

My mum's funeral was Friday the 13th unlucky for some but mum was already unlucky by having this cruel disease, the sun shone and the amount of people who...

My mum's funeral was Friday the 13th unlucky for some but mum was already unluck...

blackcushion

•10 years ago

8 Replies

My husband has PSP gaze. He has trouble keeping his eyes open and on a good day when his eyelids are open he cannot focus on my face.He has

Peripheral vision only which frustrates him very much.Has anyone found found anything to help with the gaze side of this devastating illness.Ed can longer...

Peripheral vision only which frustrates him very much.Has anyone found found any...

Pippalina

•10 years ago

18 Replies

Does anyone suffering with MSA PSP or CBD still manage to drive? . I miss it so much but worry about all the medication I'm on.

CheekyChops1973

•10 years ago

30 Replies

What is the normal years with Parkinson's ? My husband has had it for 20yrs. He does use a walker or he falls. He chokes on even water.

I never know what each day will bring. What are these stages everyone talks about? Our Dr. Never says what stage he is in.

I never know what each day will bring. What are these stages everyone talks abo...

0178

•10 years ago

15 Replies

I heard on TV that 90 yr. old Pres. Bush has a form of Parkinson's. Does anyone know if it is PSP?

carolinesimmons

•10 years ago

5 Replies

This is addressed to the creators of this site mainly, WHY DO I HAVE TO SIGN IN EACH TIME I WANT

TO REPLY TO A BLOG? IT IS VERY ANNOYING, I HAVE BEEN A MEMBER OF THE SITE FOR TWO YEARS. dorothy thompson

TO REPLY TO A BLOG? IT IS VERY ANNOYING, I HAVE BEEN A MEMBER OF THE SITE FOR ...

dorothy-thompson

•10 years ago

5 Replies

My dad just past away from this cruel disease in Sweden. Want a donation to be made in his memory. How to donate in Sweden for PSP research?

Donation for research

Lisen

•10 years ago

3 Replies

Hi my husband has has psp for about 2years his foods and fluids are thickened doesn't have any choking so far doc wants to put peg in can I

Still feed my husband normally they say before it is an medical emergency anyone else had this thank you for your support

Still feed my husband normally they say before it is an medical emergency anyone...

Kris1983

•10 years ago

6 Replies

Hi I've just joined my dad has just been diagnosed with psp he has just had the feeding tube put in as he can't swallow

We don't know much about this diseases is this near the end and if not what can we expect

We don't know much about this diseases is this near the end and if not what can ...

Juliehann

•10 years ago

13 Replies

My dad...

I don't know what to do. My dad is being brought to the hospital as I write this. He's having a hard time breathing. A week ago he was operated for tube...

I don't know what to do. My dad is being brought to the hospital as I write this...

Anne19

•10 years ago

8 Replies

incontinence bowel + some bladder

II have some problems with the the above - bowel worst - am in process of being checked by continence team at Royal Perth Hospital. - This after a wonderful...

II have some problems with the the above - bowel worst - am in process of being ...

marytea13

•10 years ago

8 Replies

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Posts - PSP Association | HealthUnlocked

PSP Association

All posts for June 2014

Have you seen this inspiring utility ? http://www.bbc.co.uk/news/technology-28041743

Hi my uncle was diagnosed with cbd around two years ago and has recently been admitted to hospital after a fall and with a uti. My Aunty

Is this normal progression?

Hi there, Just letting you all know that this terrible disease has claimed another fighter. My husband Richard passed away last Wednesday.

Daytime pump peg feeding versus overnight?

Why does it cost so much to die?

Ever hear of the PSP "road"?

Turny Orbit front passenger OR drivers seat, plus hoist Suit anyone with Mobility Issues.

How long does someone have left once they quit eating and drinking?

Hi again

Subdural bleed

Neurology, bottom of the heap!

How meaningful can you make your loved one's memory?

Have you counted your PSP BLESSINGS?

Have you ever thought about this?

Why do we care so much about diagnosis once we rule out the things we can do something about (tumor, stroke, heart/arteries etc.)?

What about being a passenger?

Has anyone experienced their loved ones developing Jaundice during the progression of the PSP? If so, what did they say the cause was?

Always looking for ways to achieve early differential diagnosis.....

Miss you mum

My husband has PSP gaze. He has trouble keeping his eyes open and on a good day when his eyelids are open he cannot focus on my face.He has

Does anyone suffering with MSA PSP or CBD still manage to drive? . I miss it so much but worry about all the medication I'm on.

What is the normal years with Parkinson's ? My husband has had it for 20yrs. He does use a walker or he falls. He chokes on even water.

I heard on TV that 90 yr. old Pres. Bush has a form of Parkinson's. Does anyone know if it is PSP?

This is addressed to the creators of this site mainly, WHY DO I HAVE TO SIGN IN EACH TIME I WANT

My dad just past away from this cruel disease in Sweden. Want a donation to be made in his memory. How to donate in Sweden for PSP research?

Hi my husband has has psp for about 2years his foods and fluids are thickened doesn't have any choking so far doc wants to put peg in can I

Hi I've just joined my dad has just been diagnosed with psp he has just had the feeding tube put in as he can't swallow

My dad...

incontinence bowel + some bladder

Search posts

Latest poll

What are your main concerns as a carer?

Topics

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