Posts - PSP Association | HealthUnlocked

PSP Association

9,625 members•11,552 posts

All posts for March 2022

Lack of sleep and PSP stage?

Hi everyone. This is a combo kind of post. I’m just trying to make some sense of it all… So I thank you for your comments… I’ve read a few times that many...

Hi everyone. This is a combo kind of post. I’m just trying to make some sense o...

•3 years ago

Hampshire Support Group update

The Hampshire Group meeting planned for Wednesday 30 March has been changed to a Zoom meeting. Invites are being circulated this morning but if you have any...

The Hampshire Group meeting planned for Wednesday 30 March has been changed to a...

Administrator•3 years ago

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CBD and coughing

My husband Alan is bed bound and mainly immobile. He is sleeping around 18 hours in 24.He is troubled by coughing both whilst eating and drinking and...

My husband Alan is bed bound and mainly immobile. He is sleeping around 18 hours...

•3 years ago

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Distressing week -Covid & CBD

Hello, I have posted a couple of questions on here before, This is a bit different, I am hoping writing this post will be therapeutic. As a family we have been...

Hello, I have posted a couple of questions on here before, This is a bit differe...

•3 years ago

PSPA Podcast for carers

Did you know PSPA has a podcast? Nine episodes are available for you to listen to on a range of topics related to caring for a loved one with living with a...

Did you know PSPA has a podcast? Nine episodes are available for you to listen t...

Administrator•3 years ago

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I'm "it" to!

My husband has had PSP for at least 6 years and I'm the only caretaker he has. His 3 kids are 600 miles away, and don't call or visit. I don't leave him for...

My husband has had PSP for at least 6 years and I'm the only caretaker he has. ...

•3 years ago

Weight loss

My husband has lost so much weight, he still eats lunch and dinner with a snack . You can see his ribs it is just so sad. Is this normal once he starts to...

My husband has lost so much weight, he still eats lunch and dinner with a snack ...

•3 years ago

Grateful Heart in offering Independence

A wonderful good morning smile — Oh the independence she feels when she can feed herself. Small fork that just fits her challenged left hand, and she can go at...

A wonderful good morning smile — Oh the independence she feels when she can feed...

•3 years ago

Ignorance!!

My husband seems ignorant of the way his illness is going to go. He does not talk about it and does not try to help himself. He watches television all day and...

My husband seems ignorant of the way his illness is going to go. He does not tal...

•3 years ago

Eye not wanting to open

My.lpved one whomive been taking care of for 7 years yesterday couldn't open her eyes. She says it started 2 months ago but no care givers have witnessed this....

My.lpved one whomive been taking care of for 7 years yesterday couldn't open her...

Stephanielayell82

•3 years ago

Hemorrhoids and PSP

Hello. It’s been a while since my last post. With constipation comes hemorrhoids… what to do about them? Nela (my mother in law) has had them for a few weeks...

Hello. It’s been a while since my last post. With constipation comes hemorrhoid...

•3 years ago

Urgency to open bowels

Hi, My dad has CBD & over the last couple of months or so he has the feeling he needs to open his bowels. Despite being on bowel medication he doesn't always...

Hi, My dad has CBD & over the last couple of months or so he has the feeling he...

•3 years ago

MUSIC THERAPY FOR ALIEN HAND

My husband who suffers from CBD is increasingly plagued by his hand clenching and clawing, especially at night. We have tried different objects, such as a...

My husband who suffers from CBD is increasingly plagued by his hand clenching a...

•3 years ago

Cherished moments

Human touch is so very important- and although Momma cannot verbalize, she sure can hug tight! I told her last night, during this goodnight hug —- “Momma your...

Human touch is so very important- and although Momma cannot verbalize, she sure ...

•3 years ago

CHC Decision

Does anyone have experience of being told verbally that they were being recommended for CHC funding after the dst but then it being refused by the panel?

Does anyone have experience of being told verbally that they were being recommen...

•3 years ago

Wheelchair renting

NHS couldn’t offer us a specialised wheelchair for my Dad so we contacted The Care Team (Manchester area). Someone comes out and measures up for a suitable...

NHS couldn’t offer us a specialised wheelchair for my Dad so we contacted The Ca...

•3 years ago

Declining

Good morning, I was told yesterday by the hospice nurse that my husband may not be here next year. Ricky started holding his spit in his mouth not swallowing...

Good morning, I was told yesterday by the hospice nurse that my husband may not ...

•3 years ago

PSP treats for patient

What kind of treats can I give to PSP patient

What kind of treats can I give to PSP patient

•3 years ago

Not sleeping

My mum has PSP which is very hard in itself to take care with. Sleeping has become a big issue. The other week I didn't get any sleep for four days straight...

My mum has PSP which is very hard in itself to take care with. Sleeping has beco...

•3 years ago

shampoo alternatives

Not showering hubby every day, anyone have any experience with dry shampoo products that don't leave hair sticky or dull looking. His hair is thin now and gets...

Not showering hubby every day, anyone have any experience with dry shampoo produ...

•3 years ago

Always room for some fancy …

Sometimes it’s just takes a fancy glass that makes it feel special —- a new way to sip cranberry juice — Happy Momma! Um - reality .. UTI prevention!

Sometimes it’s just takes a fancy glass that makes it feel special —- a new way ...

•3 years ago

Steroid withdrawal syndrome

Also known as ‘red skin syndrome’. Does anyone know anything about it? It’s a terrible response to extended use of topical steroids for eczema.

Also known as ‘red skin syndrome’. Does anyone know anything about it? It’s a te...

•3 years ago

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Any ideas with CBD

My dad was diagnosed with CBD in 2021. After many assessments and consultations with different nurses and neurologist. Although, his symptoms began around...

My dad was diagnosed with CBD in 2021. After many assessments and consultations ...

•3 years ago

Any Sikh religion person speaking punjabi with PSP able to help?

My dad was diagnosed 3 years ago and my mum who can't speak English very well still doesn't understand the disease. Is there anyone who can speak to my mum to...

My dad was diagnosed 3 years ago and my mum who can't speak English very well st...

•3 years ago

Q10 1200mg for PSP?

Hi everybody. It is my first time posting on this group. My mother in law was diagnosed PSP 1 year ago and she is not responsive to Levodopa med. Dr. says only...

Hi everybody. It is my first time posting on this group. My mother in law was di...

•3 years ago

Looking for Carn Euny!

Carn Euny .... I was in contact with you recently about Bowen therapy options, but now cannot find you! Please respond/make contact if you read this. (I am not...

Carn Euny .... I was in contact with you recently about Bowen therapy options, b...

•3 years ago

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Tender Moments

My recent Facebook post, and I thought I would share this with all of you. I’m certainly preaching the choir by sharing this, but the tender moments I share...

My recent Facebook post, and I thought I would share this with all of you. I’m ...

•3 years ago

PSP and blindness

My 74 year old husband has had PSP for several years and has suddenly lost his sight today. Is this normal for PSP?

My 74 year old husband has had PSP for several years and has suddenly lost his s...

•3 years ago

Bathroom Refit Advice

Hello. We are now at the stage with mum where we need to refit the bathroom to accommodate wheelchair showering, ease of access to sink and also toilet. Due to...

Hello. We are now at the stage with mum where we need to refit the bathroom to a...

•3 years ago

It’s the little things …

Tiptoe through the tulips with me! Happy girls are the prettiest! - Audrey Hepburn I decided to bring the sign of spring into our home, and the smile that...

Tiptoe through the tulips with me! Happy girls are the prettiest! - Audrey Hepb...

•3 years ago

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