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PSP Association

9,962 members•11,768 posts

All posts for June 2017

The PSP Chronicles June 2017

https://wordpressco900.wordpress.com/2017/06/30/the-psp-chronicles-june-2017/

https://wordpressco900.wordpress.com/2017/06/30/the-psp-chronicles-june-2017/

•8 years ago

To all our Readers!

Hi, my name is Anne, on here, known as Heady. My husband was diagnosed with PSP back in 2013, he lost his fight with this evil disease six months ago. I can't...

Hi, my name is Anne, on here, known as Heady. My husband was diagnosed with PSP...

•8 years ago

Dry Eyes and Mouth

Hubby in advanced stages of PSP and has been prescribed Hypromellose for eyes and Glandosane for mouth. Does anyone have experience of these items working....

Hubby in advanced stages of PSP and has been prescribed Hypromellose for eyes an...

•8 years ago

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Employing Private Carers v Council/Agency

Hi everyone Would anybody be able to offer any advice/experience regarding employing a private carer or personal assistant and any funding streams available to...

Hi everyone Would anybody be able to offer any advice/experience regarding emplo...

•8 years ago

Number of years of each stage

My mother in law has been diagnosed with psp this may at stage 2 ,we don't know when it started.she is using walker and wheelchair .on good days she walks some...

My mother in law has been diagnosed with psp this may at stage 2 ,we don't know ...

•8 years ago

Our Welsh 3 Peaks Challenge

Last weekend my husband and I completed the Welsh 3 Peaks Challenge in aid of PSPA. So far we have almost £700 for the charity and my company have kindly...

Last weekend my husband and I completed the Welsh 3 Peaks Challenge in aid of PS...

•8 years ago

Notes...

I stopped looking for CBD changes; I do try to take note of things that come up. I keep notes, not a journal. I print them and give them to the doctors when we...

I stopped looking for CBD changes; I do try to take note of things that come up....

•8 years ago

dmitch5858

My wife Mary recently diagnosed with CBS! we are looking for any studies or trials to participate im while she is still mobile and healthy? Looking for any...

My wife Mary recently diagnosed with CBS! we are looking for any studies or tria...

•8 years ago

New to site

Hi I'm a district nurse working in Dorset . I have a great friend who is suffering with PSP so I'm hoping to gain more of an inside to her condition

Hi I'm a district nurse working in Dorset . I have a great friend who is sufferi...

•8 years ago

Botox injections for excessive saliva and dystonia

I just wanted to find out if any of your loved ones have had Botox for excessive sativa or dystonia. My Mum is really struggling with both. Spluttering and...

I just wanted to find out if any of your loved ones have had Botox for excessive...

•8 years ago

Hospital bed

i have found and purchased a hospital bed, but I'm having a tough time mentally with it. It just bring the whole PSP thing to reality . He is falling daily and...

i have found and purchased a hospital bed, but I'm having a tough time mentally ...

•8 years ago

What has happened to Daily Post?

Dear all Am I the only one who no longer gets Daily Digests? All I have is a constant advert to download an Apple app. Firstly I don't have an iPhone and...

Dear all Am I the only one who no longer gets Daily Digests? All I have is a c...

•8 years ago

Plateau

Hello, has anyone else experienced a plateau with PSP. My husband had a bad fall and went onto morphine, he was so ill and since he has come off the morphine...

Hello, has anyone else experienced a plateau with PSP. My husband had a bad fall...

•8 years ago

a june 2017 person

My husband of 50 years this Saturday has PSP and Prostate cancer... We deal with Falling, me needing someone to talk to, about things like falling and toilet...

My husband of 50 years this Saturday has PSP and Prostate cancer... We deal with...

•8 years ago

Fuming

Just had an appointment cancelled for the second time ,athe least they gave us a days notice this time the last time it was the day before .are they waiting...

Just had an appointment cancelled for the second time ,athe least they gave us ...

allotmentartist

•8 years ago

discussing PSP with kids

My father, who will be 60 this year, has been finally correctly diagnosed with PSP. Its very hard on all of us, as you know, but I'm wondering how to best...

My father, who will be 60 this year, has been finally correctly diagnosed with P...

•8 years ago

CBD oil for PSP

Hi All Over the past 2 years my father has been struggling with this horrible condition. Recently I have been hearing a lot about CBD oils and was wondering if...

Hi All Over the past 2 years my father has been struggling with this horrible co...

•8 years ago

Psp

I have been advised by a neutritionist to stop taking my medication as it was doing me more harm than good. .Has any body got any thoughts about this and what...

I have been advised by a neutritionist to stop taking my medication as it was do...

•8 years ago

I am on holiday......... in Northern Portugal.

Everything is going well and luckily it is not too hot.......... the week before I got here it was in the 40's but now a perfect 25 degrees. All I have to...

Everything is going well and luckily it is not too hot.......... the week before...

•8 years ago

Body for research

Hi all Not been on for a while due to various reasons.... Anyway out of the blue Mum has just said to me I want my body to be used for research, have I told...

Hi all Not been on for a while due to various reasons.... Anyway out of the bl...

•8 years ago

Sleeping so much

Hi everyone my brother is into PSP about 7years now progressing very fast the last 6 month, just wondering if any of your loved ones are sleeping a lot he...

Hi everyone my brother is into PSP about 7years now progressing very fast the l...

•8 years ago

Have wheels ...

Thought I might vault gate using crutches but then thought my daughter would be cross with me .

Thought I might vault gate using crutches but then thought my daughter would be ...

•8 years ago

Tears have all dried up

Wrote a post and lost it, so here goes again. Well yesterday was our granddaughters 15 birthday she was so excited, we were all going out to dinner, which we...

Wrote a post and lost it, so here goes again. Well yesterday was our granddaught...

Yvonneandgeorge

•8 years ago

Jaw Pain

Charles has such jaw pain it's making things very difficult. Our last ditch effort is steroids and the morphine helps, but he can't eat much because of it....

Charles has such jaw pain it's making things very difficult. Our last ditch eff...

•8 years ago

On a lighter note.....

Yes even in the darkest times there is always a chink of light so I think it is beholden of me to tell you of my exploits on a mobility scooter . There is a...

Yes even in the darkest times there is always a chink of light so I think it i...

•8 years ago

I'm new here ...

Hello, I'm new here. This week my brother was diagnosed with Progressive Supranuclear Palsy and Vascular Dementia. I joined the PSP Association on hearing...

Hello, I'm new here. This week my brother was diagnosed with Progressive Supr...

•8 years ago

cannabis does it help PSP I'm new here

does anyone have experience of cannabis drops to help freezing ? I seem to see it mentioned a lot lately but no real evidence of actual usage wonder how...

does anyone have experience of cannabis drops to help freezing ? I seem to see i...

•8 years ago

Another Newbie

Have monitored the site for some while and have found a wealth of information. Hubby was diagnosed with PSP in 2013 and now in advanced stages in this...

Have monitored the site for some while and have found a wealth of information. ...

•8 years ago

The Long Goodbye

Since V has returned from the hospice where she stayed whilst I got myself sorted after breaking my leg , there has been a steady decline . Even whilst in the...

Since V has returned from the hospice where she stayed whilst I got myself sort...

•8 years ago

Finding a carer for Mum who will lift her

Hi all, my Mum, who is 82 was diagnosed with CBD two years ago and my Dad is her carer, he is also 82. We have looked into private carers to come and help Dad...

Hi all, my Mum, who is 82 was diagnosed with CBD two years ago and my Dad is her...

•8 years ago

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