Posts - PSP Association | HealthUnlocked

PSP Association

9,569 members • 11,525 posts

All posts for July 2017

Suction Machine Advice

My mum is having a Peg fitted tomorrow. We're in hospital and she began choking on very thick saliva in her sleep. It was impossible to get her to a state that...

My mum is having a Peg fitted tomorrow. We're in hospital and she began choking ...

•7 years ago

Our Mother with PSP

Hello. My sisters and I were searching for a support group and so glad that I stumbled upon this. Our mother was diagnosed with PSP in March after several...

Hello. My sisters and I were searching for a support group and so glad that I st...

•7 years ago

Our Beautiful Angel!

Our mother was diagnosed with Progressive Nuclear Palsy in April. Us girls thought all this time she had dementia. Our Dr. Noticed her eye movements and...

Our mother was diagnosed with Progressive Nuclear Palsy in April. Us girls thou...

•7 years ago

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New here - my father has PSP

Hello, I’ve just joined this board. I don’t expect easy answers, but just wanted somewhere where people know what it’s like. My father has PSP & my mother is...

Hello, I’ve just joined this board. I don’t expect easy answers, but just wanted...

•7 years ago

Mom is not breathing good, unable to speak and

My mother will turn 75 years old and has been battling with PSP for probably 7 years. She has had pneumonia twice and can barely be understood when she tries...

My mother will turn 75 years old and has been battling with PSP for probably 7 y...

•7 years ago

What questions for new Dr.

We have an appointment in a couple of days to see a new neuro. After being on this site and learning so much that NO Dr ever told us - I'm angry. I feel like...

We have an appointment in a couple of days to see a new neuro. After being on t...

•7 years ago

Sad news the 8 yr battle is over.

F left us early this morning. I am glad I was able to care for him at home and he was here till the end. It's been a hard week with many moments of despair but...

F left us early this morning. I am glad I was able to care for him at home and h...

•7 years ago

Granny

I would like to join PSPS I am a 73 year old grandmother of 2 girls and 2 boys. My husband and I have been married for nearly 50 years and have 2 daughters....

I would like to join PSPS I am a 73 year old grandmother of 2 girls and 2 boys. ...

•7 years ago

Catheters and school

Hi I'm new on here - first post! Does anyone have any advice regarding school and allowing TA's to be trained to do CIC? There's currently 3 TA's trained and...

Hi I'm new on here - first post! Does anyone have any advice regarding school a...

•7 years ago

My Amazing Mum

My Mum passed away peacefully on Sunday 9th July, she had deteriorated very quickly in just a few days. I'm not sure how I feel......numb, shocked, empty are...

My Mum passed away peacefully on Sunday 9th July, she had deteriorated very quic...

Julieanne25arobinson

•7 years ago

Good news for the future?

Dear all, Christine's post reminded me of something I had read. It appears in Cambridge UK they have decoded the molecular structure of a substance that is a...

Dear all, Christine's post reminded me of something I had read. It appears in ...

•7 years ago

Recruiting Clinical trial

This was just posted by CurePSP. Sites are in the US and Canada. Brief Description: The goal of this study is to build a clinical research consortium to test...

This was just posted by CurePSP. Sites are in the US and Canada. Brief Descript...

•7 years ago

palliative care suggesting new meds

Dad's neurologist had him see palliative care for evaluation, basically they said there is nothing medically they can do. The doctor in palliative care was...

Dad's neurologist had him see palliative care for evaluation, basically they sai...

•7 years ago

Don't know what to do

My mum has gone from eating last Sunday in a restaurant to having a temporary NG tube and having a Peg fitted on Tuesday. She has been sleeping the last 3 days...

My mum has gone from eating last Sunday in a restaurant to having a temporary NG...

•7 years ago

My rock... my hero... my dad

To all of u out there battling with loving someone thru PSP I send big hugs. What a frustrating and confusing illness this is. So happy to have found this site...

To all of u out there battling with loving someone thru PSP I send big hugs. Wha...

•7 years ago

Keeping the shirts dry

My mom and I are at a loss for how to keep my dad's shirts dry from the constant drool. He's on Meds which lessen the amount of drool, he's just unable to...

My mom and I are at a loss for how to keep my dad's shirts dry from the constant...

•7 years ago

My Brother can't talk much

My brother has just been diagnosed with PSP after 2 years of messing about with the NHS. Not that that makes much difference as I think we had worked it out...

My brother has just been diagnosed with PSP after 2 years of messing about with ...

•7 years ago

It 's as if........................................

Charles has taken a turn, agitated (tearing diapers off at night), aggressive and choking. It's as if he isn't here with me anymore.! I'm so sad. Hospice...

Charles has taken a turn, agitated (tearing diapers off at night), aggressive an...

•7 years ago

Unprepared

I am sorry to say I have joined the brave army of PSP caregivers whose loved one has lost the battle.God has been preparing me for this for some tome but still...

I am sorry to say I have joined the brave army of PSP caregivers whose loved one...

•7 years ago

CHC annual review

Just heard that we have an annual review for CHC next week at the nursing home. Has anyone had good - or bad - experience of this review ? I want to know what...

Just heard that we have an annual review for CHC next week at the nursing home. ...

•7 years ago

My father's last days

He was doing well and hospice decided to give him seraquil. They knew what this would do to a 85 year old. Then they left the pack to be administered by his...

He was doing well and hospice decided to give him seraquil. They knew what this...

•7 years ago

Sweet dreams

Hi Sarah All ok looking at his chair and he's not there. This is the hardest part sorting out what pennies you can claim for and it takes too long. Picking up...

Hi Sarah All ok looking at his chair and he's not there. This is the hardest par...

•7 years ago

Thankyou from Georgepa

Thank you for all the kind and supportive words ,they have been a huge comfort to me .I wont pretend I am doing very well as I am not ,keep being overwhelmed...

Thank you for all the kind and supportive words ,they have been a huge comfort t...

•7 years ago

feeling broken

It's been a bad day, week ,year. Finally bought a hospital bed for my guy.it is working better then I thought it would but it the dinamic of the change, so...

It's been a bad day, week ,year. Finally bought a hospital bed for my guy.it is ...

•7 years ago

Feel like I wasted precious time being angry

Just about two years ago, my husbands and I were seeing a therapist because of (what I believed to be a problem with our relationship. The therapist after...

Just about two years ago, my husbands and I were seeing a therapist because of ...

•7 years ago

we finally asked..."is there an organization for this rare disease?"

hugs to you...I am soooooo happy to find you....just received my 5th series of botox at MAYO Clinic in Rodchester, Mn., and have a hankering to connect with...

hugs to you...I am soooooo happy to find you....just received my 5th series of b...

•7 years ago

A comfortable happier husband

Hi all My husband was referred to a continence appliance nurse adviser by the hospice, and has resulted in being fitted for convenes, they are brilliant, no...

Hi all My husband was referred to a continence appliance nurse adviser by the ho...

•7 years ago

Leg raiser

Hi all, Has anyone bought or used a leg raiser to protect heels and calf muscles? I am thinking of buying one for my husband when he is in bed, as he moans and...

Hi all, Has anyone bought or used a leg raiser to protect heels and calf muscles...

•7 years ago

Question on aspiration pneumonia

Background - Dad isn't doing good at all - he keeps sleeping ALL THE TIME, screams when made to sit on his wheel chair complaining of pain everywhere, no...

Background - Dad isn't doing good at all - he keeps sleeping ALL THE TIME, screa...

•7 years ago

Funding/No funding

The letter said we had not got CHC, but joint funding with the NHS, for nursing care. Our care provider was told they would pay for half the care needed....

The letter said we had not got CHC, but joint funding with the NHS, for nursing ...

•7 years ago

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