Posts - PSP Association | HealthUnlocked

PSP Association

9,341 members • 11,393 posts

All posts for September 2017

Sent home from respite.

I thought I had found a good nursing home placement for J's rolling respite. The manager came round to assess him and I went to look round and was pleased with...

I thought I had found a good nursing home placement for J's rolling respite. The...

•7 years ago

LDN

Hi all, is any loved on or been on a little known generic drug Low Dose Naltrexone (LDN)? Although CBD/PSP not mentioned, it is used for Autoimmune,...

Hi all, is any loved on or been on a little known generic drug Low Dose Naltrexo...

•7 years ago

Help in the USA

We in the USA seem to pay everything out of pocket. I have a very fine health insurance policy through the teachers union (at least I thought it was very...

We in the USA seem to pay everything out of pocket. I have a very fine health ...

•7 years ago

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I'm really struggling

we found out my husband has CBD in April and has probably not been well around 4 years. He has recently had to finish work as he couldnt carry on any longer....

we found out my husband has CBD in April and has probably not been well around 4...

•7 years ago

Laxido

If the person taking laxido goes 2 or 3 times in a day do they have to have it or wait till stop going again

If the person taking laxido goes 2 or 3 times in a day do they have to have it o...

•7 years ago

Dry eyes with PSP

My husband complained of dry eyes - I tryed to get drops in them but he clamps them shut tight!!!!!????!!!!? Sorry if there was a recent post - I haven't...

My husband complained of dry eyes - I tryed to get drops in them but he clamps t...

•7 years ago

Register now - Sat, Oct 28, PSP/CBD Research Update + Family Conference, San Francisco Bay Area

Registration is now open! Brain Support Network will host the: PSP/CBD Research Update and Family Conference Saturday, October 28, 2017 Crowne Plaza Foster...

Registration is now open! Brain Support Network will host the: PSP/CBD Researc...

•7 years ago

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In the U.K. Court decision no longer required in right-to-die cases, judge rules

I do hope this isn't upsetting to anyone... It may make a lot of difference for some:...

I do hope this isn't upsetting to anyone... It may make a lot of difference for ...

•7 years ago

South African contacts...

A month ago I asked if anyone knew of South Africans on the forum. I would like to thank heady for her encouragement re their Doctor here. Thank you Sawa...

A month ago I asked if anyone knew of South Africans on the forum. I would lik...

•7 years ago

WHAT NEXT??!!

Euphoria of funding was short lived. PALS manager has just called me and said there is NO capacity AT ALL for my dad to have 4 visits a day at home and that we...

Euphoria of funding was short lived. PALS manager has just called me and said th...

•7 years ago

Appealing CHC decision

I posted here a few weeks ago when my father was in hospital with pneumonia. He’s now in a care home with nursing, but was refused CHC. I’m appealing, but this...

I posted here a few weeks ago when my father was in hospital with pneumonia. He’...

•7 years ago

Dad advice please

Hi. My dad is in an EMI nursing part of a care home. Advanced stages of psp. He has hit another resident and triggered an emergency meeting to assess safety...

Hi. My dad is in an EMI nursing part of a care home. Advanced stages of psp. He ...

•7 years ago

Legs giving way...

Hi all, my dad is suffering with psp. Lots of falls or near falls but twice now he says his legs have just given way. Standing one minute, legs gone from...

Hi all, my dad is suffering with psp. Lots of falls or near falls but twice now ...

•7 years ago

Incontinence Problems

My husband seems to have such a high volume of urine in the middle of the night. During the day he can wear a guard and not soak through his clothing so...

My husband seems to have such a high volume of urine in the middle of the night....

•7 years ago

Fast track success!

Having spoken to Beacon again, I just called the CCG to ask for their reasons for refusal. Long delay in taking the call....then I was told that there have...

Having spoken to Beacon again, I just called the CCG to ask for their reasons fo...

•7 years ago

Crappie September so far

My guy is still is on the decline but we are keeping our head above water. Lost a brother in law on September 5 and my baby brother on the 16.sister in law...

My guy is still is on the decline but we are keeping our head above water. Lost ...

•7 years ago

Diet and an eye out for PSP

For what its worth I am reading up on diet and have PSP on my mind as I read. There have been some quite astonishing studies post 1940's showing that cutting...

For what its worth I am reading up on diet and have PSP on my mind as I read. Th...

•7 years ago

CHC fast track refused

Ok...someone talk me down...turns out that the CHC fast track application was sent to Staffs CHC from Telford hospital on 11th. During the following week we...

Ok...someone talk me down...turns out that the CHC fast track application was se...

•7 years ago

Homeopathic medicines for PSP

Has anyone tried the homeopathic medicines for any neurodegenerative disease? Did it help in anyway?

Has anyone tried the homeopathic medicines for any neurodegenerative disease? D...

•7 years ago

A rare glimpse into my mother's world

This condition (cbd) never ceases to amaze and confuse me. Having not had more than the very occasional word from my mother for over a year, last week she...

This condition (cbd) never ceases to amaze and confuse me. Having not had more t...

•7 years ago

Another piece of the puzzle ...

Barry SEEMS to go in and out of understanding and can't verbalize IF he has understood. Then he will talk incoherently and will expect an acknowledgement. I...

Barry SEEMS to go in and out of understanding and can't verbalize IF he has und...

•7 years ago

More to wrap your brain around

Attached is a link to a series of six You Tube Videos from CurePSP from their Chicago Family Conference in June 2017. A good update. At the end of the first...

Attached is a link to a series of six You Tube Videos from CurePSP from their Ch...

•7 years ago

PAP GROUP'S?

Hi all Are there any group's near West Midlands or anyone nearby dealing with PSP? Doesn't seem to be much support around 😢

Hi all Are there any group's near West Midlands or anyone nearby dealing with PS...

•7 years ago

CHC Fast track - not so fast...

Hi all, my dad is STILL in hospital, 9 weeks after being admitted through care home neglect. He's been medically fit for discharge for 3 weeks now, minor...

Hi all, my dad is STILL in hospital, 9 weeks after being admitted through care h...

•7 years ago

Back with all the professional muppets

Hi all Well we are back at our 2nd home It seems 2 week home then a week with the pro muppets that is the pattern we have had for 6 weeks Archie is back in...

Hi all Well we are back at our 2nd home It seems 2 week home then a week with t...

•7 years ago

Met my first PSP patient in person (other than my wife )

I briefly met a couple in San Francisco at the UCSF clinic from Minneapolis .The gentleman had PSP , they were in the lobby ...we spoke very briefly ..Because...

I briefly met a couple in San Francisco at the UCSF clinic from Minneapolis .Th...

•7 years ago

PIP ASSESSMENT

Hello everyone I am more of a reader than poster on this page but thought I'd write this. I know people on here will understand my frustrations on his matter....

Hello everyone I am more of a reader than poster on this page but thought I'd wr...

•7 years ago

Fast Track CHC/End of Life Care

Hi everyone, dad was admitted on Tuesday night as he had been choking on excess saliva for over 9 hours at home, eventually after ringing 111 four times and...

Hi everyone, dad was admitted on Tuesday night as he had been choking on excess ...

•7 years ago

Second opinion appointment this afternoon

I've been trying to change my user name and instead of changing to what I want I get a worst version of what I started with. It's 4 months since I got a...

I've been trying to change my user name and instead of changing to what I want I...

•7 years ago

A bitching post.

Larry is getting on my nerves. Helping him move around I am nearly losing control of him. He isn't any help. We are going to fall one of these times. Last...

Larry is getting on my nerves. Helping him move around I am nearly losing contro...

•7 years ago

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