Posts - PSP Association | HealthUnlocked

PSP Association

9,318 members • 11,377 posts

All posts for January 2017

Hospice is hard...

Hi everyone, I'm looking for guidance regarding hospice care...Mom lives with me and was just "officially" diagnosed in September, but has had all the symptoms...

Hi everyone, I'm looking for guidance regarding hospice care...Mom lives with me...

•7 years ago

THEY TOLD ME HE WILL NEVER COME HOME HOME AGAIN

THEY HAVE DETERMINED THAT I AM NOT CAPABLE OF CARING FOR HIM ANYMORE AND HE WILL NEVER COME HOME AGAIN.

THEY HAVE DETERMINED THAT I AM NOT CAPABLE OF CARING FOR HIM ANYMORE AND HE WILL...

•7 years ago

Supporting stress

Hi All, Just wanted to put something out there for those of you who are under stress, in case it helps, even a little. When we respond to stress, our bodies...

Hi All, Just wanted to put something out there for those of you who are under s...

•7 years ago

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HE IS IN HOSPICE

AFTER FALLING TO MANY TIMES I CALLED HOSPICE AND THEY ADMITTED HIM IMMEDIATELY. I DID NOT WANT TO SEND HIM BACK TO THE HOSPITAL SINCE THEY THREW HIM OUT...

AFTER FALLING TO MANY TIMES I CALLED HOSPICE AND THEY ADMITTED HIM IMMEDIATELY. ...

•7 years ago

I am Feeling so down/depressed/blue?

I'm only (ha ha) 57, even bringing B****y PSb****yP into the equation, I did not expect to be on my own just yet, I thought F had at least a year, maybe 2, at...

I'm only (ha ha) 57, even bringing B****y PSb****yP into the equation, I did not...

•7 years ago

Dad's just been diagnosed with PSP but deteriorating so rapidly he could only have 2years...

Hello, this is my first post, we noticed changes with my dad probably 2yrs ago but he maintained he was fine in the summer his year myself and my sister told...

Hello, this is my first post, we noticed changes with my dad probably 2yrs ago b...

•7 years ago

The things I have learnt!

Hi, well it's all over, the last person has left me. Now comes the hard bit, getting on with my life without Steve. I am waiting for Mediquip, to come and...

Hi, well it's all over, the last person has left me. Now comes the hard bit, get...

•7 years ago

Trying to stay home

Trying to stay home much as possible. Will not leave him alone anymore so I work less and even though it is a full-time job taking care of him, I want to be...

Trying to stay home much as possible. Will not leave him alone anymore so I wor...

•7 years ago

Communication difficulties

Please can anyone offer any advice on how we could possibly elicit a response or a choice from my mother. She has very advanced PSP and can no longer speak or...

Please can anyone offer any advice on how we could possibly elicit a response or...

•7 years ago

PSP Webinar

Webinar for coping with stress as a caregiver.

Webinar for coping with stress as a caregiver.

•7 years ago

NHS Continuing Healthcare

NHS continuing healthcare is letting people across England down. The Continuing Healthcare Alliance, which the PSP Association is now part of, has produced a...

NHS continuing healthcare is letting people across England down. The Continuing ...

PSPA•7 years ago

Free United States Webinar for Carers - 'I've had it up to here! Coping with stress while caregiving'

Join Janet Edmundson M.E.d for a FREE Webinar on January 26th 2017 Thursday, January 26, 2017 (The webinar also will be recorded for viewing later) If the...

Join Janet Edmundson M.E.d for a FREE Webinar on January 26th 2017 Thursday, Ja...

PSPA•7 years ago

A Little Scare

This past Saturday we had a little scare with my mother in law. My husband just left her at the home, she was just about to take a nap so he thought it was a...

This past Saturday we had a little scare with my mother in law. My husband just...

•7 years ago

Love is all I need!

Hi, Steve.s funeral is tomorrow, well exactly today, it's well past my bed time! The last few days have been manic, hardly a moment to myself. I hope we...

Hi, Steve.s funeral is tomorrow, well exactly today, it's well past my bed time!...

•7 years ago

Pill Grinder

I'm sure many of you must use this kind of contraption, I've just found out so thought I'd share it. We've been crushing my mum's pills and only recently found...

I'm sure many of you must use this kind of contraption, I've just found out so t...

•7 years ago

My sister 59 yrs old diagnosed with CBD a yr ago

Last New Years Eve we invited my sister and her husband over to play games and that is when we realized there was something terribly wrong with her. She was...

Last New Years Eve we invited my sister and her husband over to play games and t...

•7 years ago

The Bluebird

After a long, difficult battle with this cruel disease, my husband, Bob, surrendered. He passed away on Christmas Eve, December 24 at 5:45 a.m., less than ten...

After a long, difficult battle with this cruel disease, my husband, Bob, surrend...

•7 years ago

I'm feeling so sad

And I so badly need a huge group hug

And I so badly need a huge group hug

•7 years ago

WHAT I AM NOT LOOKING FORWARD TO IN THE UK

HAVING READ A POST FROM SOMEONE SORRY I CANT REMEMBER WHO ABOU THE LACK OF NEURALOGICAL HELP IN THE UK .. I MUST SAY HOW MARVELLOUS THE HEALTH SYSTEM...

HAVING READ A POST FROM SOMEONE SORRY I CANT REMEMBER WHO ABOU THE LACK O...

•7 years ago

My dear mother can now sing and exercise!

My beloved mother had peacefully returned to her heavenly home last night after bearing with PSP for 6 years. She had fought a good fight till the end with...

My beloved mother had peacefully returned to her heavenly home last night after ...

•7 years ago

So sad

My husbsnd of 52 years is struggling with this awful illness bis eyesight is very poor, his voice is fading his swallowing is poor and he has stopped eating....

My husbsnd of 52 years is struggling with this awful illness bis eyesight is ver...

•7 years ago

A misunderstanding.....

I'm so sorry for those who are now worrying about Dad & I thinking that Mum has left us......she is still with us in body & a little in mind. For me the...

I'm so sorry for those who are now worrying about Dad & I thinking that Mum has ...

•7 years ago

Nothing prepares you for this.....

Sadly at the ripe old age of 48 (yes Georgepa I was born in 1968) I have lost both friends & family to illness, old age & even suicide and obviously have...

Sadly at the ripe old age of 48 (yes Georgepa I was born in 1968) I have lost bo...

•7 years ago

Choking on Saliva

It looks as though I will have to look into getting something to decrease the amount of saliva my husband is producing as he is choking on it. Has anyone...

It looks as though I will have to look into getting something to decrease the am...

•7 years ago

Sad day

Hi everyone, my dad lost his battle with PSP yesterday although we prayed for his suffering to end we will miss him dearly. We actually lost him over a year...

Hi everyone, my dad lost his battle with PSP yesterday although we prayed for hi...

•7 years ago

Protective measures

Has anyone got any ideas for protecting the corners of walls or doorways? Ours are all chipped and scratched due to wheelchair damage. I have put up with it...

Has anyone got any ideas for protecting the corners of walls or doorways? Ours a...

•7 years ago

Of interest as to a possible risk factor for PSP

https://www.ncbi.nlm.nih.gov/pubmed/26854325 Environmental and occupational risk factors for progressive supranuclear palsy: Case-control study. "We did not...

https://www.ncbi.nlm.nih.gov/pubmed/26854325 Environmental and occupational risk...

•7 years ago

The Dreaded Hospital Bed has Arrived!

It has arrived and with it the dwindling days ahead. So much to do. We are sleeping together in the living room. I'm on a twin sofa bed. Got the landscaping...

It has arrived and with it the dwindling days ahead. So much to do. We are slee...

•7 years ago

I'm furious

W was due for his annual review in December 2016 with his neurologist. 27 November I emailed neurologist to say we hadn't received an appointment. To cut a...

W was due for his annual review in December 2016 with his neurologist. 27 Novem...

•7 years ago

CHC and Attendance allowance

I hear conflicting reports...........does anyone in receipt of CHC for home care still receive Attendance allowance. I know in a care home you don't keep it...

I hear conflicting reports...........does anyone in receipt of CHC for home care...

•7 years ago

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