Posts - PSP Association | HealthUnlocked

PSP Association

9,266 members • 11,356 posts

All posts for August 2019

One year since...

It's been one year since I published my first book - The PSP Chronicles Volume 1. I'm now in the editing process of Keep On Keeping On - The PSP Chronicles...

It's been one year since I published my first book - The PSP Chronicles Volume 1...

daddyt

•5 years ago

18 Replies

Down We Go

Aging is such a joy. Larry had to pee yesterday. Raised his lift chair and pulled his short and disposable underwear down. Noticed the underwear was wet. Got a...

Aging is such a joy. Larry had to pee yesterday. Raised his lift chair and pulle...

Hidden

•5 years ago

30 Replies

My mum died of PSP and im scared i have it too!

I lost my mum 10 years ago to Psp. and i have been ill this last year, balance issues, memory problems , blurry eyes , extreme neck and spine pain , great...

I lost my mum 10 years ago to Psp. and i have been ill this last year, balance i...

AlliP

•5 years ago

17 Replies

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Jillannf6

Hi Jillann It's good to see you are still with us here. Thinking of you and sending hugs. Warmly Kevin

Hi Jillann It's good to see you are still with us here. Thinking of you and send...

Kevin_1

•5 years ago

27 Replies

My mother has had PSP for 6yrs.

My mother has had PSP for 6yrs.Unable to swallow on RT feeds.Extreme salivation with recurrent aspiration any help will be appreciated

My mother has had PSP for 6yrs.Unable to swallow on RT feeds.Extreme salivation ...

kumanan

•5 years ago

6 Replies

A beautiful day for my husband's send off

The day before yesterday here in Kent, was a day of torrential rain but yesterday, the day I would be sending my husband Roy off with final farewells,was...

The day before yesterday here in Kent, was a day of torrential rain but yesterda...

DenB

•5 years ago

30 Replies

Psp life expectancy

Just a bit of advice needed .what do people find the life expectancy of people with psp , we think dad as had it since 2015 , can still walk with aids , but...

Just a bit of advice needed .what do people find the life expectancy of people w...

Rocky3434

•5 years ago

27 Replies

PSP - distraction - inability to focus

Whenever it's time to get my husband up or get him to do anything, I have to turn off the TV. If there is any sound or anything moving, he focuses his...

Whenever it's time to get my husband up or get him to do anything, I have to tur...

journeyofjoy

•5 years ago

12 Replies

Sara Stedy - the best piece of equipment ever!

A few months ago, I asked for advice on what to purchase to help my husband transfer. After much research, we ended up purchasing a Sara Stedy and I may...

A few months ago, I asked for advice on what to purchase to help my husband tran...

journeyofjoy

•5 years ago

17 Replies

PSP swallowing issues. What to look for?

Sandy has always had seasonal allergies with some post nasal drip so I'm used to hearing him clear his throat mildly. Recently he has done a lot of much louder...

Sandy has always had seasonal allergies with some post nasal drip so I'm used to...

journeyofjoy

•5 years ago

11 Replies

Toothache

Hi All, A new hurdle! Anyone come across ones love one with PSP with a toothache. Sam can’t open his mouth anymore & has been on a feeding tube for over a...

Hi All, A new hurdle! Anyone come across ones love one with PSP with a toothach...

Krmaier6896

•5 years ago

7 Replies

Petition for change in ICU protocol for Neurological patients

On our father’s 2nd death anniversary, I have started this petition, with the hope to bring a change towards care given at hospitals for patients with...

On our father’s 2nd death anniversary, I have started this petition, with the h...

niti_v

•5 years ago

3 Replies

She’s SO LUCKY!!

Sunday afternoon winnings!!! She makes my heart smile!!!

bazooka111

•5 years ago

11 Replies

Martin Bell, I’m wondering

Have any of you see the UNICEF advert with Martin Bell of white suit fame ? I’m watching it, and seeing the stare in his gaze, the halting speech, which sounds...

Have any of you see the UNICEF advert with Martin Bell of white suit fame ? I’m ...

Ratcliffe

•5 years ago

2 Replies

Holiday insurance

Holiday insurance price came back at £119.00 for 5night holiday in lake district for 2 , with one person having copd and psp , if was travelling to Europe,...

Holiday insurance price came back at £119.00 for 5night holiday in lake district...

Rocky3434

•5 years ago

4 Replies

What a sense of accomplishment!

We can do anything we want to, if we stick to it long enough - Helen Keller What a great sense of accomplishment for Mom on our summer puzzle!! Stick to...

We can do anything we want to, if we stick to it long enough - Helen Keller Wh...

bazooka111

•5 years ago

7 Replies

What are the odds?

I've been dealing with late stage PSP with my husband who has had the misfortune to have not one but two rare diseases! When he was born he had Hirschprung's...

I've been dealing with late stage PSP with my husband who has had the misfortune...

Jkhakh2

•5 years ago

18 Replies

Palliative/Hospice Care

Larry is in the later stages of PSP. He’s in remarkable good health to date but he is declining. I have been asking the primary care doctor about hospice care...

Larry is in the later stages of PSP. He’s in remarkable good health to date but ...

Hidden

•5 years ago

64 Replies

Tea anyone?

Finished my sewing project. On to the next paint by number thing. OMG I have to stay busy!

Finished my sewing project. On to the next paint by number thing. OMG I have to ...

SewBears

•5 years ago

16 Replies

Out of his suffering and at peace

I have not posted for some time. Unfortunately my husband Edward Hunter, who had progressive supranuclear palsy passed away on the 22 July 2019. He is at peace...

I have not posted for some time. Unfortunately my husband Edward Hunter, who had...

Hidden

•5 years ago

68 Replies

Journey has ended

Today is the 6 month anniversary of my dad’s death from PSP. It is also the 1 year mark of a significant decline. From this time last year until his death on...

Today is the 6 month anniversary of my dad’s death from PSP. It is also the 1 ye...

tlovins

•5 years ago

7 Replies

What a great bunch you are

I only posted yesterday for the first time and your response has lifted my spirits no end. Thanks to; raincitygirl, hilsandR, dadshelper, willow_rob, AJK2001 &...

I only posted yesterday for the first time and your response has lifted my spiri...

DE4EE

•5 years ago

6 Replies

I'm new and Wanting to just put down my thoughts...

Hi , My mum has been diagnosed with PSP and to be honest, i don't really know what to think about it all. The hardest thing I find is dealing with the change...

Hi , My mum has been diagnosed with PSP and to be honest, i don't really know wh...

sparkle63

•5 years ago

21 Replies

Rest easy!

My Beautiful man passed on Monday 5th August, I know that he is free now ,but he was taken way to young. Iam heartbroken and feel so lost at the moment. It is...

My Beautiful man passed on Monday 5th August, I know that he is free now ,but he...

demlac

•5 years ago

31 Replies

Mobility

Hi All Just wondering about the kids of mobility. Hubby has CBD. Shuffles at times but can stride when agitated. Unfortunately, that has caused lots of falls &...

Hi All Just wondering about the kids of mobility. Hubby has CBD. Shuffles at tim...

beau1988

•5 years ago

22 Replies

Last days with mum

Hi all you lovely people I can hardly believe I am writing this but our turn is finally here. My lovely little mum has had enough and as hard as it is I've had...

Hi all you lovely people I can hardly believe I am writing this but our turn is ...

dollydott

•5 years ago

36 Replies

Makes her feel so special

One on one time is the way to go! We’ve had family coming over to visit for years — but with Moms current health - one on one visits rock! This is mom...

One on one time is the way to go! We’ve had family coming over to visit for year...

bazooka111

•5 years ago

23 Replies

The Dash

I don’t know if any of you have come across the following poem. It resonates with me, particularly when we all appreciate how precious life is and how it can...

I don’t know if any of you have come across the following poem. It resonates wi...

Toddet

•5 years ago

4 Replies

At peace now

Mum passed away at 1.52 am today, she's free from this dreadful disease, we love you Mum ,you will be very much missed xx

Mum passed away at 1.52 am today, she's free from this dreadful disease, we love...

Jimjam22

•5 years ago

63 Replies

Roar!

LOL!

SewBears

•5 years ago

14 Replies

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Posts - PSP Association | HealthUnlocked

PSP Association

All posts for August 2019

One year since...

Down We Go

My mum died of PSP and im scared i have it too!

Jillannf6

My mother has had PSP for 6yrs.

A beautiful day for my husband's send off

Psp life expectancy

PSP - distraction - inability to focus

Sara Stedy - the best piece of equipment ever!

PSP swallowing issues. What to look for?

Toothache

Petition for change in ICU protocol for Neurological patients

She’s SO LUCKY!!

Martin Bell, I’m wondering

Holiday insurance

What a sense of accomplishment!

What are the odds?

Palliative/Hospice Care

Tea anyone?

Out of his suffering and at peace

Journey has ended

What a great bunch you are

I'm new and Wanting to just put down my thoughts...

Rest easy!

Mobility

Last days with mum

Makes her feel so special

The Dash

At peace now

Roar!

Search posts

Latest poll

What are your main concerns as a carer?

Topics

Archive