Posts - PSP Association | HealthUnlocked

PSP Association

9,312 members • 11,374 posts

All posts for November 2017

Tired and sleeping much more

Charles is so very, very tired and sleeping so much more. He has one eye that closes involuntarily and his mouth droops. He still eats but it's not as much...

Charles is so very, very tired and sleeping so much more. He has one eye that c...

•6 years ago

DDT

I have read an article about DDT and how there is real concern that it could be the cause if a lot of neurological conditions. It seems even after it's use...

I have read an article about DDT and how there is real concern that it could be ...

•6 years ago

My sister has CBD

Hello, I am Christine, living in Australia. My sister lives in another state and was initially diagnosed by a podiatrist as having peripheral neuropathy, then...

Hello, I am Christine, living in Australia. My sister lives in another state an...

•6 years ago

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Conference Video and Notes - PSP+CBD Research Update and Practical Conference

A month ago, Brain Support Network and UCSF held an all-day conference on PSP and CBD. One attendee reflected on the conference this way: "Excellent...

A month ago, Brain Support Network and UCSF held an all-day conference on PSP an...

•6 years ago

Baclofen

My husband, who has CBD, is about to embark on a course of Baclofen. This is in the hope that it will ease off his spasticity. I know all sufferers are...

My husband, who has CBD, is about to embark on a course of Baclofen. This is in...

•6 years ago

Very sleepy

Hi all,my husband George has had a couple of days in bed just seems like he is exhausted,it happened about two months ago and the same before that,he has no...

Hi all,my husband George has had a couple of days in bed just seems like he is e...

•6 years ago

shouting out

Hi all my mother , was diagnosed with psp , three months ago . after five years of trying to find an answer . mum is now confind to bed , currently in...

Hi all my mother , was diagnosed with psp , three months ago . after five years...

•6 years ago

Improving vision - Lundy loops

I understand Lundy Loop glasses are helpful for holding the eyelids open, when these start to close. Does anyone know where I can get some? I have searched...

I understand Lundy Loop glasses are helpful for holding the eyelids open, when t...

•6 years ago

Hospice at last

Hi all, my dad is finally on his way to hospice this morning. Relieved but so sad. It took a while to persuade my mom that this was the right thing. She'd...

Hi all, my dad is finally on his way to hospice this morning. Relieved but so s...

•6 years ago

Saliva pump

The neurologist has referred John to a dr for Botox injections. I've been hassling for an early appointment but have now been told he has been referred to St...

The neurologist has referred John to a dr for Botox injections. I've been hassli...

•6 years ago

Chair for CBD

Hello everyone Please delete this post if it's not allowed. Before my family sell elsewhere, I thought I'd post it on here. My nan suffered from CBD and had a...

Hello everyone Please delete this post if it's not allowed. Before my family se...

•6 years ago

A replacement of Sinemet

Hi All, I didnt post here for long time as i was getting married and life was so busy but i always read all your posts so carefully. I feel sorry for all your...

Hi All, I didnt post here for long time as i was getting married and life was s...

•6 years ago

Christmas gift ideas for a CBD sufferer.

My Grandmother was diagnosed with CBD last year. She is at a stage where she really struggles using her hands, especially with eating. She is also becoming...

My Grandmother was diagnosed with CBD last year. She is at a stage where she rea...

•6 years ago

Vaginal bleeding

I noticed mum loosing blood this morning whilst helping her at the toilet. Has anyone else had any experience of this or could it be a totally different...

I noticed mum loosing blood this morning whilst helping her at the toilet. Has a...

•6 years ago

Another sad day

Well today when our daughter came around George wanted to say something to her, I had to listen and try to work out what he was saying, he was asking her if...

Well today when our daughter came around George wanted to say something to her, ...

Yvonneandgeorge

•6 years ago

swallowing problems

My mother has PSP and she has problems to drink water. She close the mouth and she doesn´t want to drink. She´s starting with kidney´s troubles. Do you have...

My mother has PSP and she has problems to drink water. She close the mouth and s...

•6 years ago

Explain more than sweating

My guy is sweating so much and like I don't have enough laundry. Another gift from PSP. Hypothalamus. ... The hormones from the hypothalamus govern...

My guy is sweating so much and like I don't have enough laundry. Another gift f...

•6 years ago

PSP

my 73-year old sister has been diagnosed with PSP 4 years ago. She is getting worse now - so weak that she can no longer walk without support from two helpers...

my 73-year old sister has been diagnosed with PSP 4 years ago. She is getting w...

•6 years ago

Respite

Morningre Well off on monday for a weeks r and r. Where did that twelve weeks go! Not going too far as things are worsening, managed to get a little cottage in...

Morningre Well off on monday for a weeks r and r. Where did that twelve weeks go...

•6 years ago

Alone with my dying father and I'm having panic attacks.

I'm obsessed with trying to figure out how long he has and if I can handle it. My Dad is 63 with metastsized esophageal cancer. I basically moved in with him 2...

I'm obsessed with trying to figure out how long he has and if I can handle it. M...

•6 years ago

Newbie to this site

Hi, I am new to this blog! I joined to get support from others whose loved ones also suffer from CBD. My MIL has been battling this disease for 5 years now....

Hi, I am new to this blog! I joined to get support from others whose loved ones ...

•6 years ago

Not a cloud in the sky for a whole seven days.........

It is now a week since I returned home from a wonderful holiday in Lisbon. With the help of my dear friend I manged the steep narrow cobbled streets, we made...

It is now a week since I returned home from a wonderful holiday in Lisbon. With...

•6 years ago

Chocking when taking Madopar

Hi, My mum is struggling taking her medicine. We have tried putting in water but that doesn’t help. It’s partly due to the medicine. And partly the amount of...

Hi, My mum is struggling taking her medicine. We have tried putting in water bu...

•6 years ago

Feeling very low.

Well we had our 1st CHC appeal meeting today. I am feeling very low and depressed because I have been tasked with `providing further evidence` despite the...

Well we had our 1st CHC appeal meeting today. I am feeling very low and depress...

•6 years ago

End-of-life

Hi everyone I always look on here to see how everyone is coping. I am sorry I haven't posted any interesting things. My husband Les is at end-of-liife care now...

Hi everyone I always look on here to see how everyone is coping. I am sorry I ha...

•6 years ago

Deprivation of liberty orders

Has anyone heard of these being used for PSP patients? I’m at my wits end. I can’t keep John safe. He gets up from chair and falls breaking things and hurting...

Has anyone heard of these being used for PSP patients? I’m at my wits end. I ca...

•6 years ago

5 years later...

Well, it has been 5 yrs next week since a proper diagnosis was made. I participated with writing posts and responding to others for the first couple of years,...

Well, it has been 5 yrs next week since a proper diagnosis was made. I participa...

•6 years ago

Newly Diagnosed? (? meaning we're not convinced of diagnosis at this point)

My Brother was first diagnosed with PSP, now we are being told it may be CBS instead. Wonder if anyone has had any luck using CBD oil for either of these...

My Brother was first diagnosed with PSP, now we are being told it may be CBS ins...

•6 years ago

Hope for the future..................

http://www.cam.ac.uk/news/stephen-hawking-endorses-new-ps50-million-centre

http://www.cam.ac.uk/news/stephen-hawking-endorses-new-ps50-million-centre

•6 years ago

At peace

Just to let you all amazing people I couldn have got through this without your support. Mum passed away yesterday so peacefully, she looked so lovely and pain...

Just to let you all amazing people I couldn have got through this without your s...

•6 years ago

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