Posts - PSP Association | HealthUnlocked

PSP Association

9,312 members • 11,374 posts

All posts for August 2017

A good CHC assessment experience

Applied for CHC almost as a training exercise never expecting to get it. Ive been doing the caring myself except for two daytime sessions when I have fixed...

Applied for CHC almost as a training exercise never expecting to get it. Ive bee...

•7 years ago

Roma power pack

In case anyone is interested the sale of my power pack for the wheel chair didn't happen in the end so it is still available for £120 and delivered...

In case anyone is interested the sale of my power pack for the wheel chair di...

•7 years ago

more secure ways to keep pads on

my mother is in bed and has pads and pants on as she is incontinent im having to wash 2 sets of bedding and night wear each day as she keeps taking it off...

my mother is in bed and has pads and pants on as she is incontinent im having ...

•7 years ago

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Question early symptoms

I am wondering if anyone with CBD started drooling during the night in the early stages. I have attention difficulties can't multi task anymore sometimes...

I am wondering if anyone with CBD started drooling during the night in the early...

•7 years ago

CHC from hospital

Hi all..me again with another 'less than straightforwards' CHC question. My dad triggered the checklist in our authority when he was at home on 12th July. He...

Hi all..me again with another 'less than straightforwards' CHC question. My dad...

•7 years ago

Worrying time

Last few days hubby sleeping most of the time with Breathing becoming very shallow. Will open eyes for 10-15 minutes staring into space then back to sleep. DN...

Last few days hubby sleeping most of the time with Breathing becoming very shall...

•7 years ago

Advice needed

Hi all. After a bit of advice. Barry has rapidly declined. Had to call emergency doctor out on Monday. He said to have him admitted to hospital straight away,...

Hi all. After a bit of advice. Barry has rapidly declined. Had to call emergency...

•7 years ago

Feeding solution?

Hi folks Liz is having greater difficulty opening her mouth to take soft food. She has decided not to have a peg and yet she is otherwise fairly strong....

Hi folks Liz is having greater difficulty opening her mouth to take soft food. ...

•7 years ago

Give yourself a pat on the back ..

All your dear carers need to be acknowledged for the self less care you put into your loved ones. I have had a hard time these past few days and feel like I'm...

All your dear carers need to be acknowledged for the self less care you put into...

•7 years ago

SO MANY EMOTIONS TODAY............

This morning I got up early and drove down to the river and managed to capture the sunrise. In April 2003 I traveled up this tidal river in my narrowboat on my...

This morning I got up early and drove down to the river and managed to capture t...

•7 years ago

Feeding techniques and moving to PEG.

Hi Everyone, My mum has PSP for approx 7 years now. no speech and a lot of rigidity. She is getting to the stage where solid food is no longer an option....

Hi Everyone, My mum has PSP for approx 7 years now. no speech and a lot of rigid...

•7 years ago

Things to do

We also found PT, OT, speech therapy and a few Parkinson's exercise classes (dance, yoga, etc) helpful in the initial phase - something to do and until he bad...

We also found PT, OT, speech therapy and a few Parkinson's exercise classes (da...

•7 years ago

Big hugs!

So sorry to hear of your sisters psp! My mom was 76 when diagnosed last year, which makes the prognosis even less predictable than for someone like your sister...

So sorry to hear of your sisters psp! My mom was 76 when diagnosed last year, wh...

•7 years ago

Newly Diagnosed PSP

My sister, 57, is recently diagnosed with PSP. She was showing signs and symtopms since almost two years. At the same time she was going through some family...

My sister, 57, is recently diagnosed with PSP. She was showing signs and symtopm...

•7 years ago

Drink Me

All chores done hubby asleep. Opened fridge and a bottle says Drink Me. So I take small glass of wine into he garden and get some vitamin D. Feel...

All chores done hubby asleep. Opened fridge and a bottle says Drink Me. So I tak...

•7 years ago

Roma Wheel chair assist power pack

I have found all the bits which go with this motor - recharger fixing brackets etc The battery is good as we only used it for a while as the mobility...

I have found all the bits which go with this motor - recharger fixing bracke...

•7 years ago

Is there any point ...

Giving a 5 year PSP sufferer high blood medication when there is literally so much else they can die of. I would like to hear your opinions please. Althea 💛🙏

Giving a 5 year PSP sufferer high blood medication when there is literally so mu...

•7 years ago

Nursing home/hospice??

Hi everyone. My dad has psp and has been living in private residential care for a year. (He sold his house and 2/3rds of the money has already gone on care...

Hi everyone. My dad has psp and has been living in private residential care for ...

•7 years ago

Feeling so tired

Hi everyone, just hate PSP, George is coughing and choking all the time, it is horrible to see, this happening so many times a day. The agitation is back, he...

Hi everyone, just hate PSP, George is coughing and choking all the time, it is h...

Yvonneandgeorge

•7 years ago

Clinical trail

Hi everyone as some of you I have been looking for a good clinical trial for my husband Charlie he has had PSP for 11 years now. Why do they have trials if...

Hi everyone as some of you I have been looking for a good clinical trial for my ...

•7 years ago

Thought I'd share

We had these special tops made for mum because her stiffness has got so bad that putting conventional clothes on is very difficult. The picture shows the back...

We had these special tops made for mum because her stiffness has got so bad that...

•7 years ago

Guilt is to the past As Worry is to the future

I heard this in my CR group tonight and wanted to share it. I don't think it needs explaining but may I offer it as a solace who feel the guilt that maybe they...

I heard this in my CR group tonight and wanted to share it. I don't think it nee...

•7 years ago

My home made life

Well heres how I get Aunt Bev into truck. What ever works I always say and for now this works. So off to the pool we go. Lots of hugs

Well heres how I get Aunt Bev into truck. What ever works I always say and for ...

•7 years ago

Suggestion required on liquid diet

My mom is suffering from psp sinsce 2012, now she cant move on her own, she dont speak, and cant open her mouth, and even cant blink her eyes, She is on...

My mom is suffering from psp sinsce 2012, now she cant move on her own, she don...

•7 years ago

I feel so useless

How do you get over that feeling of being totally powerless to help the one that needs you the most? Mum is so scared of the unknown yet so brave that she...

How do you get over that feeling of being totally powerless to help the one that...

•7 years ago

Sore knees

MIck has his six monthly check with his neurologist tomorrow, he has had painful knees this last week.he is still mobile and doing well but is taking ibuprofen...

MIck has his six monthly check with his neurologist tomorrow, he has had painful...

allotmentartist

•7 years ago

M & M

We are adding methadone to help with the pain in Charles' jaws. We will still use the morphine as well. I wasn't aware that PSP patients had this much pain and...

We are adding methadone to help with the pain in Charles' jaws. We will still us...

•7 years ago

PSP and iron

Wondering if anyone else has iron balance problems in their family? My dad has the H63D genetic mutation, which is strongly associated with neurodegenerative...

Wondering if anyone else has iron balance problems in their family? My dad has t...

•7 years ago

Who lives in Toronto, Canada?

It is very difficult to find a PSP support group in Markham, Ontario, Canada.

It is very difficult to find a PSP support group in Markham, Ontario, Canada.

•7 years ago

Im back been unable to log in

Many Hugs to all I have missed you and hope all is well. My Aunt Bev is still hanging in there, I still get the middle finger when she does not like what im...

Many Hugs to all I have missed you and hope all is well. My Aunt Bev is still h...

•7 years ago

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