Posts - PSP Association | HealthUnlocked

PSP Association

9,249 members • 11,346 posts

All posts for March 2018

CCGs being taken to Court?

At last poor and unlawful CCG practice is being challenged. "NHS organisations are facing legal action over discriminatory Continuing Healthcare policies, the...

At last poor and unlawful CCG practice is being challenged. "NHS organisations ...

•6 years ago

Pain and rigidity

Hi all, just wondering if anyone has experience pain in the hands along with rigidity, Colin can’t seem to hold things or he drops them, and telling me his...

Hi all, just wondering if anyone has experience pain in the hands along with rig...

•6 years ago

Thank you so much

To everyone for responding to my recent post about sis. I tried to respond back to everyone and hope I didn't miss anyone. I feel blessed to have come in...

To everyone for responding to my recent post about sis. I tried to respond back...

•6 years ago

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Miss you mum xxxx

It’s took me since Christmas to write this. My beautiful, wonderful , strong mum lost her battle just before Christmas. She fought well to the end but I’m so...

It’s took me since Christmas to write this. My beautiful, wonderful , strong mum...

•6 years ago

Feeling hopless

Hello all I prey you are all ok. My husband Charlie seems to be good ng down hill, we moved with our daughter she is doing everything to keep him going. We...

Hello all I prey you are all ok. My husband Charlie seems to be good ng down hil...

•6 years ago

How do you know that your are doing enough?

This probably should be a reply to @kevin_1 post on lambic system, https://healthunlocked.com/psp/posts/137634900/more-on-the-limbic-system-and-guilt, but I...

This probably should be a reply to @kevin_1 post on lambic system, https://heal...

•6 years ago

Botox

It is getting more difficult for my husband to open his mouth. He has to push any food in between his teeth. Has anyone had experience with Botox injections...

It is getting more difficult for my husband to open his mouth. He has to push a...

Greenkerrycounty

•6 years ago

More on the limbic system and guilt

I feel I am being too loud here. Apologies. I was asked to repost this reply as a stand alone. Hope that's OK. A little hubris? ouch! *** The limbic system...

I feel I am being too loud here. Apologies. I was asked to repost this reply a...

•6 years ago

The emotional roller coaster and how not to get overwhelmed

This post is with thanks to hubetsy and Kmacgamwell whose open hearted posts touched me quite a bit and which got me thinking about one of the hardest parts of...

This post is with thanks to hubetsy and Kmacgamwell whose open hearted posts tou...

•6 years ago

Don't know whats happening

We have been told that my father needs a feeding tube or he will die. He initially refused the feeding tube but is now considering it. I think this will just...

We have been told that my father needs a feeding tube or he will die. He initial...

•6 years ago

Toys For Us?

So T is finally home from a 6 week hospital-to-nursing home (mis) adventure! After a few days of slightly looking disoriented and confused he seems finally...

So T is finally home from a 6 week hospital-to-nursing home (mis) adventure! Af...

•6 years ago

New home-hospice patient

First time here. I am the spouse caregiver of 72 y.o. PSP patient who was officially diagnosed 3 years ago but has had symptoms for 12 years or more. His...

First time here. I am the spouse caregiver of 72 y.o. PSP patient who was offici...

•6 years ago

Australians

Like Hiebert, I'm curious to know how many Australians use this site. My husband has PSP and we live in Ballarat, Victoria.

Like Hiebert, I'm curious to know how many Australians use this site. My husband...

•6 years ago

Pressure sores

Hi all, update on my wife (CBD). For the past three years her left arm has been locked across her chest. Eight months ago she had some botox (botulinum toxin)...

Hi all, update on my wife (CBD). For the past three years her left arm has been ...

•6 years ago

Burning legs and feet; frustration with locum who suggested assisted suicide as a "Snap out of it" tactic :(

Greetings everyone: I have been reading many posts on here, but I haven't been responding much. Sis has really declined in the past few months. She had...

Greetings everyone: I have been reading many posts on here, but I haven't been r...

•6 years ago

My mother

My mother has just been diagnosed with psp today not sure what the future holds

My mother has just been diagnosed with psp today not sure what the future holds ...

•6 years ago

High fever,for no reason

Hi, all, I'm needing some input. Two days ago my mom with psp, suddenly started chilling and had a fever of 103' gave her Tylenol but that didn't bring her...

Hi, all, I'm needing some input. Two days ago my mom with psp, suddenly started...

•6 years ago

My darling has gone

My darling Valerie , wife,friend,soulmate for over 60 years has passed away. She went peacefully on Saturday night - all of our children and grandchildren were...

My darling Valerie , wife,friend,soulmate for over 60 years has passed away. She...

•6 years ago

First sign of confusion?

We have moved into a smaller house and there are some leaky taps which we have to fix. Ch woke up in the night and said "Why don't we just go to the agent?"...

We have moved into a smaller house and there are some leaky taps which we have t...

•6 years ago

Reforming CHC and Social Care

At last Parliament is hearing. CHC and Social Care (Provided by Social Services) are both on their knees with regards to staffing and resources. At last MPs...

At last Parliament is hearing. CHC and Social Care (Provided by Social Services...

•6 years ago

A little bit lost.

Hi all, sorry to see everyone's continual battles against such an awful and unfair illness. My dad's been ok the last few months, had 'parkinsons' for about...

Hi all, sorry to see everyone's continual battles against such an awful and unfa...

•6 years ago

Absolutely unbelievable - not in a good way!

Hi All, I apologise in advance for this rant, because I'm absolutely livid and don't know where else to air my frustration. I also apologise if none of this...

Hi All, I apologise in advance for this rant, because I'm absolutely livid and d...

•6 years ago

CHC again :(

Hello to you all, hope your weather is as good as it is here in Suffolk, England. It’s beautiful at the moment. Today I received a letter from CHC to say that...

Hello to you all, hope your weather is as good as it is here in Suffolk, England...

•6 years ago

Birthday Celebration with Family

Charles' birthday was yesterday. Brother and sister in law traveled across the country to celebrate and say goodbye. Afraid Charles will give up when they...

Charles' birthday was yesterday. Brother and sister in law traveled across the ...

•6 years ago

Canadians

Just curious how many Canadians are on this site? Which province?

Just curious how many Canadians are on this site? Which province?

•6 years ago

Thankyou...

I just want to say a big thank you for all the replies to my last post. Such kind messages & lovely words that really do bring much comfort. For those who...

I just want to say a big thank you for all the replies to my last post. Such kin...

•6 years ago

The PSP Chronicles Final Winter Update... hopefully.

Hi all. Still having issues posting the blog to this site. Here's the link address if you're interested in reading; wordpressco900.wordpress.com/

Hi all. Still having issues posting the blog to this site. Here's the link addre...

•6 years ago

Off the cliff - part three

Well we got all we needed in place - carers ,equipment ,etc - and then Tuesday I asked the doctor to visit and she dropped the bombshell ! She was so...

Well we got all we needed in place - carers ,equipment ,etc - and then Tuesday I...

•6 years ago

Refused CHC?

Hi folks I've had a slight relapse and have started reading up on CHC again. ;) I keep hearing about cases where people are refused CHC when they are dealing...

Hi folks I've had a slight relapse and have started reading up on CHC again. ;) ...

•6 years ago

Epileptic meds

Hi everyone I recently had a phone conversation with our specialist. I described the jerks my husband does on & off all day which usually is a single jerk....

Hi everyone I recently had a phone conversation with our specialist. I describe...

•6 years ago

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