Posts - PSP Association | HealthUnlocked

PSP Association

9,960 members•11,768 posts

All posts for January 2025

Messages of Hope

To the Atypical Parkinsonism community—patients, caregivers, family, friends, and the public— You are not alone. Every challenge faced, every moment of...

To the Atypical Parkinsonism community—patients, caregivers, family, friends, an...

daddyt

•3 months ago

1 Reply

PSP and catheters!

Dad, 80, (PSP for approx 4 years) had a catheter fitted in hospital in Sept. This was huge relief for both Mum and Dad. The last time the district nurses came...

Dad, 80, (PSP for approx 4 years) had a catheter fitted in hospital in Sept. Thi...

SurreyK

•3 months ago

10 Replies

For the Caregiver

https://l.facebook.com/l.php?u=https%3A%2F%2Fpspawareness.com%2Fblogs%2Fpsp-q-a%2Fthe-dual-facets-of-love-sorrow-and-strength%3Ffbclid%3DIwZXh0bgNhZW0CMTEAAR0FS

https://l.facebook.com/l.php?u=https%3A%2F%2Fpspawareness.com%2Fblogs%2Fpsp-q-a%...

daddyt

•3 months ago

1 Reply

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Love and Loss

https://l.facebook.com/l.php?u=https%3A%2F%2Fpspawareness.com%2Fblogs%2Fpsp-q-a%2Fthe-unseen-journey-of-love-and-loss%3Ffbclid%3DIwZXh0bgNhZW0CMTEAAR3GsZ_rmnfyA

https://l.facebook.com/l.php?u=https%3A%2F%2Fpspawareness.com%2Fblogs%2Fpsp-q-a%...

daddyt

•3 months ago

5 Replies

Support groups in London

Hello, My mother has been diagnosed with PSP, 3-4 years ago. Fortunately the disease has been progressing slowly but other conditions make it increasingly...

Hello, My mother has been diagnosed with PSP, 3-4 years ago. Fortunately the d...

dario73

•3 months ago

8 Replies

PSP Variants

And now you know... more....

daddyt

•3 months ago

5 Replies

Hello

I am thankful to have stumbled upon this community. My 72-year old father was recently diagnosed as probably PSP after many months on Parkinson's medication...

I am thankful to have stumbled upon this community. My 72-year old father was r...

KellieGlessner

•3 months ago

3 Replies

Fast Track CHC Funding

Dear all, After the last two positive CHC checklists were rejected by the ICB, my Mum has today been awarded fast track CHC funding as she is end of life....

Dear all, After the last two positive CHC checklists were rejected by the ICB, ...

GeorgeMMXVI

•3 months ago

6 Replies

Pain management - how much …

dad has late stage CBD and is 81. He is still very much there, his memory and understanding of what is going on is not affected. Everything else is in a...

dad has late stage CBD and is 81. He is still very much there, his memory and un...

Harshacceptance

•3 months ago

17 Replies

Trying to learn more about PSP and its symptoms

Hello everyone! I take care of MIL and she was recently diagnosed with PSP. It has become increasingly hard to understand this disease there always seems to be...

Hello everyone! I take care of MIL and she was recently diagnosed with PSP. It h...

Teerae95

•3 months ago

10 Replies

Speech problem nearly completely Non verbal

My husband has PSP and am wondering if any one has recommendations for help with communication. It’s too late for voicebanks. We have an alphabet board...

My husband has PSP and am wondering if any one has recommendations for help with...

Morag1952

•3 months ago

15 Replies

Mr waxman hi im maxwell I have ftd

Hi im maxwell I have cortical basal syndrome aytipical parkinsons and ftd times are hard seeing the physiciatrist on tues not sure what he can hoping this...

Hi im maxwell I have cortical basal syndrome aytipical parkinsons and ftd times...

Rangers56

•3 months ago

3 Replies

Gold standard palliative care

Hi, I've seen a couple of items on here regarding the palliative care and making sure its on medical records.My husband was diagnosed 16th December 2024 with...

Hi, I've seen a couple of items on here regarding the palliative care and making...

Birdie04

•3 months ago

26 Replies

Struggling to get a diagnosis still and 4 years in and currently in hospital again

I am the daughter of Christine We are battling to get a diagnosis and have had no support from Anyone despite being 4 years in My mum cannot mover her...

I am the daughter of Christine We are battling to get a diagnosis and have had ...

Karen1981

•3 months ago

29 Replies

hello, I’m new here. Please help if you can

I am the daughter of Christine We are battling to get a diagnosis and have had no support from Anyone despite being 4 years in My mum cannot mover her...

I am the daughter of Christine We are battling to get a diagnosis and have had ...

Karen1981

•3 months ago

10 Replies

Youtube video: Updates on PSP and CBD

If you have PSP or CBD, or care for someone who has these diseases, you may be interested in the following video by Dr Nikolaus McFarland who is Associate...

If you have PSP or CBD, or care for someone who has these diseases, you may be i...

MullerRice

•3 months ago

1 Reply

Faces and Voices

Faces and Voices. Join the growing numbers of caregivers, patients and loved ones willing to share their stories to raise PSP-CBD, MSA and DLB awareness. Be...

Faces and Voices. Join the growing numbers of caregivers, patients and loved o...

daddyt

•3 months ago

Be the first to reply

Faces and Voices

Faces and Voices. Join the growing numbers of caregivers, patients and loved ones willing to share their stories to raise PSP-CBD, MSA and DLB awareness. Be...

Faces and Voices. Join the growing numbers of caregivers, patients and loved one...

daddyt

•3 months ago

2 Replies

CHC Funding

After 4 months of waiting, we finally had our care needs assessment and carer’s assessment today. My husband, who has PSP, was unable to engage as he was...

After 4 months of waiting, we finally had our care needs assessment and carer’s ...

Darlingtonian

•3 months ago

12 Replies

profile mattress

Has anyone any experience of replacing the mattress on an NHS profile bed? My wife can’t get comfortable on her bed, gets up several times during the night and...

Has anyone any experience of replacing the mattress on an NHS profile bed? My wi...

Pspuser

•3 months ago

14 Replies

Hydrotherapy

Hi. Just wondered has anyone used hydrotherapy as a movement enhancer or to help with pain. My husbands mobility is pretty good at the moment and was thinking...

Hi. Just wondered has anyone used hydrotherapy as a movement enhancer or to help...

Birdie04

•3 months ago

11 Replies

Hypnotherapy to alleviate symptoms in PSP

Hi, I started trying hypnotherapy to alleviate pain and Freezing of Gait, but not feel any benefit, may be due to having only two sessions. Did anybody of you...

Hi, I started trying hypnotherapy to alleviate pain and Freezing of Gait, but n...

BluesHealer

•3 months ago

2 Replies

Carer experience

Hi I am Warren from Melbourne Aust. My wife Pam is approaching the severe stages of PSP. Twice in the last 18 months she was woken me up in the early morning...

Hi I am Warren from Melbourne Aust. My wife Pam is approaching the severe stages...

Healey303

•3 months ago

8 Replies

At Peace

Mum passed last Tuesday aged 85, very peacefully and without pain in her bed at home. Her death certificate shows cause of death as cortico basal syndrome....

Mum passed last Tuesday aged 85, very peacefully and without pain in her bed at ...

Araucana

•3 months ago

20 Replies

Toilet trouble

Hi all can I ask some advice from you wonderful people. My mum is a PSP warrior diagnosed 3 years ago (possibly had symptoms for 5 years) she is generally...

Hi all can I ask some advice from you wonderful people. My mum is a PSP warrior ...

DebHep

•3 months ago

10 Replies

A physical support group in the UK

Hi, I am currently in the UK and I am in search of a physical support group for PSP for my mum, if you have any idea for support around Leeds, that would be...

Hi, I am currently in the UK and I am in search of a physical support group for ...

Candor8

•3 months ago

2 Replies

Caregiving, Physiotherapy, Destressing and Romance

For quite sometime, I have been feeling that perhaps I should write herein a love story I know of that centers on a husband who cares 24×7 for his wife...

For quite sometime, I have been feeling that perhaps I should write herein a ...

PineEater

•3 months ago

10 Replies

Behaviour advice

Hi Mum was diagnosed with PSP in late 2023 and has gone downhill since then. She is now in a care home and for the last few months has had an increasing...

Hi Mum was diagnosed with PSP in late 2023 and has gone downhill since then. S...

Catvegas

•3 months ago

8 Replies

Faces and Voices

PSP-CBD, MSA and DLB awareness. Faces and Voices Campaign - Share your story and make a difference towards raising awareness, understanding and support for...

PSP-CBD, MSA and DLB awareness. Faces and Voices Campaign - Share your story an...

daddyt

•3 months ago

6 Replies

HELP MEDICATION ENQUIRY

V best friend in Seville, Spain..with PSP end stage...there is NO palliative care avail..i am senior pall care nurse from UK.Recent DRUG CHANGES..VIA PEG TUBE...

V best friend in Seville, Spain..with PSP end stage...there is NO palliative car...

Tobias1234

•3 months ago

5 Replies

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Posts - PSP Association | HealthUnlocked

PSP Association

All posts for January 2025

Messages of Hope

PSP and catheters!

For the Caregiver

Love and Loss

Support groups in London

PSP Variants

Hello

Fast Track CHC Funding

Pain management - how much …

Trying to learn more about PSP and its symptoms

Speech problem nearly completely Non verbal

Mr waxman hi im maxwell I have ftd

Gold standard palliative care

Struggling to get a diagnosis still and 4 years in and currently in hospital again

hello, I’m new here. Please help if you can

Youtube video: Updates on PSP and CBD

Faces and Voices

Faces and Voices

CHC Funding

profile mattress

Hydrotherapy

Hypnotherapy to alleviate symptoms in PSP

Carer experience

At Peace

Toilet trouble

A physical support group in the UK

Caregiving, Physiotherapy, Destressing and Romance

Behaviour advice

Faces and Voices

HELP MEDICATION ENQUIRY

Search posts

Latest poll

What are your main concerns as a carer?

Topics

Archive