Posts - PSP Association | HealthUnlocked

PSP Association

9,312 members • 11,374 posts

All posts for March 2021

Just joined this morning CBS psp

Hi I'm maxwell from east kilbride I have both psp and cbd I have alot of trouble with the condition

Hi I'm maxwell from east kilbride I have both psp and cbd I have alot of troub...

Rangers55champions

•3 years ago

New Diagnosis and Struggling

Hi Everyone, my Dad was diagnosed last summer with PSP both my parents live with me and to be honest this is the hardest think we have ever dealt with, it is...

Hi Everyone, my Dad was diagnosed last summer with PSP both my parents live with...

•3 years ago

Redness on legs

Hi everyone. My mum is in her seventh year of PSP. She has developed redness on her legs, mainly around the knees. Like a spider web. Her GP says it a PSP...

Hi everyone. My mum is in her seventh year of PSP. She has developed redness o...

•3 years ago

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Touching Base

Hello friends -- I appreciate those of you that have reached out to me; this touches my heart deeply. I have been off the grid for a while. Transparency --...

Hello friends -- I appreciate those of you that have reached out to me; this tou...

•3 years ago

Bazooka111

Anyone heard from Kim at Bazooka111 lately?

Anyone heard from Kim at Bazooka111 lately?

•3 years ago

Clonazapam vs. Lorazepam

I have noticed several posts or comments about anxiety medications. My husband’s hospice doctor has prescribed 0.5 mg Lorazepam. I asked his nurse about the...

I have noticed several posts or comments about anxiety medications. My husband’s...

•3 years ago

MEDICAL BED wants a new home

We have a fully functional medical bed (with wooden effect boards - rather than the more clinical looking metal ones). Purchased for when nursing dad at home,...

We have a fully functional medical bed (with wooden effect boards - rather than ...

•3 years ago

Upcoming PSPA Local Group Meetings

PSPA has a range of support groups available to help connect you with people who are living through the same experiences as you. Upcoming Zoom meetings......

PSPA has a range of support groups available to help connect you with people who...

Administrator•3 years ago

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Getting a PEG tube - psychological setback

My mum has had PSP for 6 years now and I'm finding discussions and experiences shared on this forum very relevant and calming for me. Mum does not need a PEG...

My mum has had PSP for 6 years now and I'm finding discussions and experiences s...

•3 years ago

Corticobasal Degeneration

Hi there, My mum has sadly been diagnosed with CBD 😞 the diagnosis came with such a shock, and at present feeling overwhelmed and lost in what our future...

Hi there, My mum has sadly been diagnosed with CBD 😞 the diagnosis came with su...

•3 years ago

"I joined the Evening Helpline team to people who have lived through the same challenges."

"I decided to volunteer for PSPA about ten years ago when my husband was first diagnosed with PSP. We were given so little information by the neurologist and...

"I decided to volunteer for PSPA about ten years ago when my husband was first d...

Administrator•3 years ago

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Wet room design for PSP

Hi All, Can you put your thinking caps on. We have just agreed to purchase a bungalow as we need single floor living for my wife's PSP. However there is a...

Hi All, Can you put your thinking caps on. We have just agreed to purchase a bu...

•3 years ago

Gait Worsening

Good morning, I feel like I'm writing on this board more and more (which scares me a little), but I feel like I'm noticing more each week. So here's what I've...

Good morning, I feel like I'm writing on this board more and more (which scares ...

•3 years ago

A race night with a difference!

This week our #MondayMotivation is Linda McGillivary. Last year, before the restrictions were brought in, Linda got together with members of her community to...

This week our #MondayMotivation is Linda McGillivary. Last year, before the rest...

Administrator•3 years ago

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My Mom Passed Away

This is the post I’ve been dreading for years. My Mom passed away 24 hours ago. She’s had PSP for 15 years. I will miss her terribly and I will love her always...

This is the post I’ve been dreading for years. My Mom passed away 24 hours ago. ...

•3 years ago

Saw Dad after 3 months

Dad has PSP and has been falling frequently since last year. Had the worst one on new years day where he had been hospitalised for 2 week. Since then he’s been...

Dad has PSP and has been falling frequently since last year. Had the worst one o...

•3 years ago

Send Easter love in a hummingbird notelet

This April, send your Easter wishes to friends and family in a beautiful hummingbird notelet. Not only will people love to receive a note in the post, you will...

This April, send your Easter wishes to friends and family in a beautiful humming...

Administrator•3 years ago

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Help

Hi everyone, need some help. My husband had started getting anxious right after dinner time, then I spoke to the hospice nurse and she said well give him...

Hi everyone, need some help. My husband had started getting anxious right after ...

•3 years ago

Council tax reduction uk

Are you aware you can claim a 25% reduction in council tax for severe mental impairment, that includes people with cbd/psp. How many have successfully claimed,...

Are you aware you can claim a 25% reduction in council tax for severe mental imp...

•3 years ago

Working

Retired in February to take care of my husband 24/7 he can not be left at home. I have a chance to work one day a week from 1130/530, I would have someone...

Retired in February to take care of my husband 24/7 he can not be left at home. ...

•3 years ago

Pain relief for CBD Patient

Good afternoon everyone, My mom woke me up this morning with a lot of pain in her mouth and I got her to the dentist a few hours later, but she does have an...

Good afternoon everyone, My mom woke me up this morning with a lot of pain in he...

•3 years ago

Walking for Dave

Wishing Matt Morey lots of luck as he begins his #WalkingforDave challenge today, on his birthday 🥳 Matt is walking 130 miles in a month in honour of his dad,...

Wishing Matt Morey lots of luck as he begins his #WalkingforDave challenge today...

Administrator•3 years ago

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Help in preventing UTIs

My wife has been living with familial FTD for the last 10 years and was diagnosed with PSP 2 years ago. For the last 18 months she has been plagued with UTIs...

My wife has been living with familial FTD for the last 10 years and was diagnos...

•3 years ago

Irregular jaw movement - CBD

Good afternoon from Atlanta, GA I was given a suggestion by doctors to always monitor my mom's progression each month and take note of any changes I've seen....

Good afternoon from Atlanta, GA I was given a suggestion by doctors to always mo...

•3 years ago

Play in the 10,000 Voices Raffle for a chance to win £500

Help raise awareness of PSP & CBD and be in with a chance of winning £500 by playing in our 10,000 Voices raffle. Playing in the raffle will help to ensure:...

Help raise awareness of PSP & CBD and be in with a chance of winning £500 by pla...

Administrator•3 years ago

Medication swallowing

Good morning My mother has advance PSP. She only weighs 48 kilos and is having great difficulties in swallowing anything. Two nights ago the nursing home...

Good morning My mother has advance PSP. She only weighs 48 kilos and is having ...

•3 years ago

Local MP meeting with PSPA supporter this Friday

A big thank you to Ellie Charles who last week wrote to her local MP, Julia Lopez, in support of the #10000Voices campaign. Ellie's MP has written back...

A big thank you to Ellie Charles who last week wrote to her local MP, Julia Lope...

Administrator•3 years ago

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"I wanted others to know they’re not alone"

"When a diagnosis of PSP devastated my family we felt confused and bewildered by this unknown condition. PSPA provides a source of information and assistance....

"When a diagnosis of PSP devastated my family we felt confused and bewildered by...

Administrator•3 years ago

Jaw pain with PSP?

My husband was only diagnosed with PSP two weeks ago and is already on hospice care. He was in hospital and rehab and just came home yesterday. Now his jaw...

My husband was only diagnosed with PSP two weeks ago and is already on hospice c...

•3 years ago

Strength in Numbers

Sunday Feb. 28th was Worldwide Rare Disease Day. I received a friendly response to the Symptoms by the Numbers YouTube video -some 1200+ views by the end of...

Sunday Feb. 28th was Worldwide Rare Disease Day. I received a friendly response ...

•3 years ago

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