Posts - PSP Association | HealthUnlocked

PSP Association

9,625 members•11,552 posts

All posts for June 2021

Mum's progression of PSP

Hi everyone, my Mum was diagnosed with PSP in 2018 and the time has now come where she needs full time care, so she is moving to a care home in 2 weeks time....

Hi everyone, my Mum was diagnosed with PSP in 2018 and the time has now come whe...

Spiderwebb21

•3 years ago

11 Replies

Hi, has anyone else had a problem with nursing homes pressuring you into getting a peg fitted, and saying she may be asked to leave if not?

Psp, peg, swallow

sodthis

•3 years ago

11 Replies

Advice Wanted from Occupational Therapist - for 79 year old with PSP since 2018, re planning ahead for likely household needs. Thanks!

Advice wanted from OT? for forward planning in life, as in household needs and changes. I am 79, with PSP diagnosed 30 months ago, and so far coming on...

Advice wanted from OT? for forward planning in life, as in household needs and c...

timbowPSP

•3 years ago

7 Replies

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This is ME

Momma loves going through her old family photos — she studies them … forms words of family names, as she reviews every part of the image. Tears, smiles,...

Momma loves going through her old family photos — she studies them … forms words...

bazooka111

•3 years ago

11 Replies

Curing rare diseases

FYI - fascinating article. Brain diseases are briefly mentioned as possibly benefiting from this procedure....

FYI - fascinating article. Brain diseases are briefly mentioned as possibly bene...

Ettavb

•3 years ago

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Leaning

Sorry I was wondering if anyone on here has done this or can tell me what causes it. Rick doesn’t do it all the time but when he does it’s like he can’t stand...

Sorry I was wondering if anyone on here has done this or can tell me what causes...

Hidden

•3 years ago

10 Replies

Wet bed

My husband peed the bed for the first time last night, I’m hoping it is a one time thing.

My husband peed the bed for the first time last night, I’m hoping it is a one ti...

Hidden

•3 years ago

22 Replies

Shortness of breath - help please

My wife was diagnosed with PSP two months ago. She has suffered shortness of breath for some while, getting significantly worse from last November onward....

My wife was diagnosed with PSP two months ago. She has suffered shortness of bre...

Epsilon12

•3 years ago

6 Replies

Trouble with mucus

My husband John was diagnosed in Aug 2019 with PSP, complete with the hummingbird. We believe he has been showing the symptoms since 2016, when he began to...

My husband John was diagnosed in Aug 2019 with PSP, complete with the hummingbi...

ladydog255

•3 years ago

5 Replies

I just want it to end now

So I wrote a few weeks ago saying the end was close for mum as we were in palliative care stage. Over the weekend mums been put on the syringe driver and it’s...

So I wrote a few weeks ago saying the end was close for mum as we were in pallia...

sparkle63

•3 years ago

29 Replies

Neck Rigidity relief??

Hi All, I’m hoping someone might me able to help. My dad was diagnosed with PSP in March this year, he has lots of other health issues (diabetes, kidney...

Hi All, I’m hoping someone might me able to help. My dad was diagnosed with PSP ...

HipsterChick

•3 years ago

8 Replies

Thank you

I rarely post anything anywhere but I’m compelled to thank everyone on this site - the info, ideas and mostly your loving support has gotten myself and my...

I rarely post anything anywhere but I’m compelled to thank everyone on this site...

Hidden

•3 years ago

22 Replies

Hummingbird tattoo

I’m thinking of getting a tattoo in memory of my lovely Mike. I seem to remember that others on this site have done this. Can anyone send me photos ? We’re...

I’m thinking of getting a tattoo in memory of my lovely Mike. I seem to remember...

Caro2132

•3 years ago

9 Replies

PSPA Support Grants help 23 people

"The iPad is amazing he uses it all the time. He is using puzzles on it and enjoys watching train journeys on youtube. The process of applying for the grant...

"The iPad is amazing he uses it all the time. He is using puzzles on it and enj...

HelenPSPA

Administrator•3 years ago

Be the first to reply

Carers are amazing

Hi, i don't often post on here, but some of the recent posts have been so amazing i felt compelled just to say - huge respect!!! The care and love this forum...

Hi, i don't often post on here, but some of the recent posts have been so amazin...

Leander12

•3 years ago

4 Replies

Toolkit for Caregivers

Hi, Fellow Caregivers, just found a great resource-Toolkit for Caregivers: Tips, Skills and Wisdom to Maximize Your Time Together by Deidre Edwards. It...

Hi, Fellow Caregivers, just found a great resource-Toolkit for Caregivers: Ti...

Bojszi

•3 years ago

1 Reply

Imagine... Reimagined

https://www.youtube.com/watch?v=B3aufCxPhU0&t=33s There seemed to an issue with the link - I've reposted. Tim

https://www.youtube.com/watch?v=B3aufCxPhU0&t=33s There seemed to an issue wit...

daddyt

•3 years ago

12 Replies

Imagine... Reimagined

For my extended PSP-CBD family. Awareness never ends. https://www.youtube.com/watch?v=B3aufCxPhU0&t=25s Tim x

For my extended PSP-CBD family. Awareness never ends. https://www.youtube.com/wa...

daddyt

•3 years ago

Be the first to reply

Moving Day

Hi All, Not sure when I posted last, but Mom's progression has continuously gone downhill. At first I wasn't sure I was making the right decision, but I know I...

Hi All, Not sure when I posted last, but Mom's progression has continuously gone...

ARutzen

•3 years ago

21 Replies

Young carers wanted for the PSPA Podcast

Thank you to everyone who has downloaded and listen to our first two PSPA Podcast episodes. The next episode talking about misdiagnosis will be available in...

Thank you to everyone who has downloaded and listen to our first two PSPA Podcas...

HelenPSPA

Administrator•3 years ago

Be the first to reply

Letting drinks dribble out

We feed my mother soft, cut-up food and thickened liquids, with some regular water, and she can manage that. The water does often cause coughing and...

We feed my mother soft, cut-up food and thickened liquids, with some regular wat...

Martina_MP

•3 years ago

13 Replies

Can an ipad aid communication?

My mum is loosing the ability to talk verbally and finding it difficult to spell/write. With communication a common difficulty with PSP my parents are...

My mum is loosing the ability to talk verbally and finding it difficult to spell...

NetballMagic

•3 years ago

18 Replies

Appliance for support chin?

Hello there everyone. I wonder if anybody can help. My beautiful mum has had PSP for 7 years now. She is at the stage where she has to be fed very soft...

Hello there everyone. I wonder if anybody can help. My beautiful mum has had P...

Dollybert

•3 years ago

5 Replies

PSPA Podcast for carers now available

Today we're really excited to be launching our PSPA Podcast for carers. The podcast will aim to help inform and connect carers supporting a loved one with PSP...

Today we're really excited to be launching our PSPA Podcast for carers. The podc...

HelenPSPA

Administrator•3 years ago

2 Replies

Excessive sleeping and bowel incontinent

Hi everyone a new development with my husband Brian , he has started sleeping on and off all day or sitting with his eyes closed sometimes asleep sometimes...

Hi everyone a new development with my husband Brian , he has started sleeping o...

Lord77

•3 years ago

5 Replies

One way drinking straws

I have just brought for my husband not cheap one way drinking straws, any thing to help him doing it himself. The straw suggests no more coughing or coking, it...

I have just brought for my husband not cheap one way drinking straws, any thing ...

Poppypolo

•3 years ago

9 Replies

Drinking/eating aids?

Dear all, I don't post much on here, but just wanted to begin by thanking everyone that contributes to this forum, it has been a constant source of information...

Dear all, I don't post much on here, but just wanted to begin by thanking everyo...

SilP

•3 years ago

18 Replies

Orthostatic Hipotension (OH): Is there any known association between OH and PSP?

Hi, I’ve checked my blood pressure during a couple of hours: when standing up and during a 2 km walk (using a portable measuring device). I’ve concluded that...

Hi, I’ve checked my blood pressure during a couple of hours: when standing up an...

BluesHealer

•3 years ago

2 Replies

Unbalance when starting moving forward again after stopping : One more symptom of PSP?

by middle of November 2020 I was diagnosed with a Parkinsonism suggestive of PSP . My only claim was “freezing of gait” only when rotating (no problem when...

by middle of November 2020 I was diagnosed with a Parkinsonism suggestive of PSP...

BluesHealer

•3 years ago

10 Replies

Dysphasia cookbooks

Have any of you tried one of the dysphasia cookbooks that are out there? What are your thoughts? Barry’s swallowing is becoming much more difficult, and I am...

Have any of you tried one of the dysphasia cookbooks that are out there? What ar...

WindyGirl

•3 years ago

8 Replies

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Posts - PSP Association | HealthUnlocked

PSP Association

All posts for June 2021

Mum's progression of PSP

Hi, has anyone else had a problem with nursing homes pressuring you into getting a peg fitted, and saying she may be asked to leave if not?

Advice Wanted from Occupational Therapist - for 79 year old with PSP since 2018, re planning ahead for likely household needs. Thanks!

This is ME

Curing rare diseases

Leaning

Wet bed

Shortness of breath - help please

Trouble with mucus

I just want it to end now

Neck Rigidity relief??

Thank you

Hummingbird tattoo

PSPA Support Grants help 23 people

Carers are amazing

Toolkit for Caregivers

Imagine... Reimagined

Imagine... Reimagined

Moving Day

Young carers wanted for the PSPA Podcast

Letting drinks dribble out

Can an ipad aid communication?

Appliance for support chin?

PSPA Podcast for carers now available

Excessive sleeping and bowel incontinent

One way drinking straws

Drinking/eating aids?

Orthostatic Hipotension (OH): Is there any known association between OH and PSP?

Unbalance when starting moving forward again after stopping : One more symptom of PSP?

Dysphasia cookbooks

Search posts

Latest poll

What are your main concerns as a carer?

Topics

Archive