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PSP Association

9,371 members • 11,411 posts

All posts for October 2018

Ankle swelling

I was taking admantadine for six months I stopped it because I developed swelling of the ankles well one ankle... But my ankle still swelling I thought it was...

I was taking admantadine for six months I stopped it because I developed swellin...

Rosabellazita

•6 years ago

7 Replies

Dystonia

Dystonia My brother has been having several episodes can’t think of a word to call it but it is like he zones out for a while his legs go straight out his arms...

Dystonia My brother has been having several episodes can’t think of a word to ca...

Tttp

•6 years ago

2 Replies

Rigid hips

My FIL yesterday complained of his hips feeling stiff the dystonia episodes are coming most days at least once. He has stiffness of his neck. We were only...

My FIL yesterday complained of his hips feeling stiff the dystonia episodes are ...

Pooches

•6 years ago

4 Replies

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More "Good News/Bad News"

This seems to be a common thread here lately: My wife is currently in the Bio-Gen study (not the similar Abbvie study). It is a double-blind study of a...

This seems to be a common thread here lately: My wife is currently in the Bio-Ge...

Dickwin

•6 years ago

19 Replies

Anyone else fed up with giving instructions ?

Wow I have never know such a tiring/trying desease every day I have to tell my husband how to move “take the step” “bottom in “ “don’t lean forward “ “slow...

Wow I have never know such a tiring/trying desease every day I have to tell my h...

Dance1955

•6 years ago

61 Replies

Doctors!!

Had a telephone appointment with the doctor to ask some tablets to help with muscle spasms. She said are you sure it's not your condition are you still having...

Had a telephone appointment with the doctor to ask some tablets to help with mus...

Mamapiggle

•6 years ago

12 Replies

Some positive news but tinged with increasing issues.......

Hi, Today an electrician came and fitted a pull switch next to my bed that will open the basement door to the entrance of my apartment block. He also fitted a...

Hi, Today an electrician came and fitted a pull switch next to my bed that will ...

Bargiepat

•6 years ago

23 Replies

Ridgidity and pain and bending

Dan was feeling pain in his very rigid leg last night. Is this common, and what can I do for him, I gave him ibuprofen. He eventually seemed to rest so I hope...

Dan was feeling pain in his very rigid leg last night. Is this common, and what...

Karynleitner

•6 years ago

30 Replies

Left to its own devises.

The garden has gotten short shift this year more than ever before. I have neither the time nor energy to deal with it. It is mostly reverted to weeds. After a...

The garden has gotten short shift this year more than ever before. I have neithe...

Hidden

•6 years ago

16 Replies

Some good news

Good morning all, I haven’t posted for a while and when I did I was so touched by all of your lovely messages. Things have improved slightly for my lovely...

Good morning all, I haven’t posted for a while and when I did I was so touched b...

Hiking13

•6 years ago

16 Replies

Saga goes on....

After sending in a formal complaint this morning with photos as evidence the home has given Mum a week notice due to my behaviour and have said they may limit...

After sending in a formal complaint this morning with photos as evidence the hom...

Spiralsparkle

•6 years ago

58 Replies

Tasigna (nilotinib) and clinical trials

Rigorous clinical trials are essential in order to reliably establish both the safety and efficacy of new drugs for the treatment of a particular condition....

Rigorous clinical trials are essential in order to reliably establish both the s...

pspa-helpline

PSPA•6 years ago

3 Replies

Hospital Check up

We have attended my FIL three month check up with neurology under Dr Knopp a very kind gentleman. He listened and heard how the last three months have changed...

We have attended my FIL three month check up with neurology under Dr Knopp a ver...

Pooches

•6 years ago

6 Replies

Urinary Incontinence

Questions for my forum friends: Seems like this has come on fast. It started with a little dribbling on the way to the toilet, like he waited too long to go,...

Questions for my forum friends: Seems like this has come on fast. It started wi...

Khartt

•6 years ago

13 Replies

Sleep or lack of!!

Dear All We are hitting a new era of agitation in the daytime and at night. Daytime I am managing but the nights are exhausting. So looking to the experts (...

Dear All We are hitting a new era of agitation in the daytime and at night. Day...

Tippyleaf

•6 years ago

27 Replies

Peg

Just back from hospital appt to discuss a peg .Our doc quite keen but surgeon thinks we should wait as Duncan still eating quite well though choking quite a...

Just back from hospital appt to discuss a peg .Our doc quite keen but surgeon th...

Westerngirl

•6 years ago

3 Replies

Living nightmare

Hi all So it was 5 weeks yesterday since Mum was placed into 'temporary' nursing bed. It has been a living hell and I don't know where to turn to next. On...

Hi all So it was 5 weeks yesterday since Mum was placed into 'temporary' nursin...

Spiralsparkle

•6 years ago

45 Replies

Some members of the group might identify with this procedure.

Excerpt The PSP Chronicles Volume 1 Yesterday, I read a report from my Speech and Swallowing Test from October 2015, outlining some of the difficulties I’d...

Excerpt The PSP Chronicles Volume 1 Yesterday, I read a report from my Speec...

daddyt

•6 years ago

12 Replies

MRI and blood tests

Hello to all. We waited three months to get into a Neurologists office for first evaluation. Doctor said MRI and blood tests were "normal" - but he also said...

Hello to all. We waited three months to get into a Neurologists office for first...

Debspottery1

•6 years ago

7 Replies

George

Well after George got a chest infection, about 3-4 days later he has a urine infection, it has really knocked him out, his temperature has been 39-40 really...

Well after George got a chest infection, about 3-4 days later he has a urine in...

Yvonneandgeorge

•6 years ago

69 Replies

Corticobasil Degeneration Advice Needed?

My father has been put in a nursing home because, he has CBD he can’t walk, transfer for his wheelchair, his left side of his body is useless, today he had a...

My father has been put in a nursing home because, he has CBD he can’t walk, tran...

Purple_peace

•6 years ago

18 Replies

Unresponsive Episode

Hello - I am new to this group and very thankful that it exists. My mother was officially diagnosed with PSP 6 years ago - and misdiagnosed for at least 2...

Hello - I am new to this group and very thankful that it exists. My mother was ...

rs25

•6 years ago

10 Replies

Summer’s over

The swallows and house martins have left for warmer climes and for me that means summer is over . I too have “ migrated” but I have headed north visiting my...

The swallows and house martins have left for warmer climes and for me that means...

Georgepa

•6 years ago

26 Replies

CBD hereditary?

Hello everyone. I have a question that I’ve been wondering for so long since my nanna passed away from CBD. Does anyone else think it could be hereditary?...

Hello everyone. I have a question that I’ve been wondering for so long since my ...

Keiramurphy

•6 years ago

10 Replies

CBD

My mom is suffering from CBD since 8 months ...would like to join this group to support her ...

My mom is suffering from CBD since 8 months ...would like to join this group to...

Momdee

•6 years ago

4 Replies

Frozen?

Today I found my husband, sitting at the lunch table like he was frozen in time. His hands were in the air, above the plate like he was holding a sandwich, but...

Today I found my husband, sitting at the lunch table like he was frozen in time....

Gingerw3

•6 years ago

10 Replies

What’s your tipping point ?

Hi there, every day i think I’ve reached my tipping point, but I don’t really know what that is or will be. For those of you whose loved one is already in...

Hi there, every day i think I’ve reached my tipping point, but I don’t really kn...

Caro2132

•6 years ago

26 Replies

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Posts - PSP Association | HealthUnlocked

PSP Association

All posts for October 2018

Ankle swelling

Dystonia

Rigid hips

More "Good News/Bad News"

Anyone else fed up with giving instructions ?

Doctors!!

Some positive news but tinged with increasing issues.......

Ridgidity and pain and bending

Left to its own devises.

Some good news

Saga goes on....

Tasigna (nilotinib) and clinical trials

Hospital Check up

Urinary Incontinence

Sleep or lack of!!

Peg

Living nightmare

Some members of the group might identify with this procedure.

MRI and blood tests

George

Corticobasil Degeneration Advice Needed?

Unresponsive Episode

Summer’s over

CBD hereditary?

CBD

Frozen?

What’s your tipping point ?

Search posts

Latest poll

What are your main concerns as a carer?

Topics

Archive