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PSP Association

9,252 members • 11,348 posts

All posts for April 2012

South West London PSPA Support Group, next meeting to be held on Saturday 12 May in Wimbledon

The PSPA newly formed South West London Support Group held its first meeting on 14 April. Meetings will be held monthly going forward, the next one being on...

The PSPA newly formed South West London Support Group held its first meeting on ...

Kate42

•12 years ago

1 Reply

It's difficult to cope with PSP

My dear mother, who will be 89 in two weeks, was diagnosed with PSP on 30 April last year. Over the previous 3 years, she had increasingly suffered many...

My dear mother, who will be 89 in two weeks, was diagnosed with PSP on 30 April ...

Hidden

•12 years ago

10 Replies

Frank now at peace & free

Just to let our little community know that my husband Frank passed away peacefully at home on Monday night. He was literally surrounded by family & friends. We...

Just to let our little community know that my husband Frank passed away peaceful...

hazelb

•12 years ago

13 Replies

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PSP Awareness - Honk if you have PSP!

I've been trying to think of ways to share info about the realities of PSP...one way is to have had a poster up in my car rear window this last week with the...

I've been trying to think of ways to share info about the realities of PSP...one...

FranR

•12 years ago

2 Replies

How to stop someone with PSP pulling out the PEG constantly?

My sister is 4 years into PSP and she lives in a nursing home in Cali, Colombia. She can´t talk, she can´t walk, she can´t see properly, her left arm is...

My sister is 4 years into PSP and she lives in a nursing home in Cali, Colombia....

Marcela-Hughes

•12 years ago

8 Replies

pee pee (peter)

following my last post my stepdad has had three bad falls one on sunday i took him to A&E he fell face first on the disabled slope leading to the front door,...

following my last post my stepdad has had three bad falls one on sunday i took h...

emazros

•12 years ago

1 Reply

London Marathon.....

I posted last week about my daughter, Becca, who was running in the Marathon to raise much needed funds and awareness for PSP. Becca finished in a very...

I posted last week about my daughter, Becca, who was running in the Marathon to ...

Daria

•12 years ago

9 Replies

Any benefit from taking Mirapaxen and Madopar

My husband has been on Mirapaxen and an increasing dose of Madopar for the last 2 years with no sign of any improvement in his mobility. The Madopar has just...

My husband has been on Mirapaxen and an increasing dose of Madopar for the last ...

gp1943

•12 years ago

8 Replies

Awareness Week 2012 – ‘ A Million to beat PSP ‘

This Sunday is the start of Awareness Week 2012, and also the day when over 100 runners will take part in The London Marathon to raise funds for PSPA....

This Sunday is the start of Awareness Week 2012, and also the day when over 100 ...

PSPA_CameronW

•12 years ago

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Atropine Drops

Tony was recently prescribed Atropine drops under the tongue to help dry excessive secretions in the mouth. Having used them occasionally I can report that the...

Tony was recently prescribed Atropine drops under the tongue to help dry excessi...

SuzieQ

•12 years ago

2 Replies

The Neurologist

I just returned form seeing the neurologist. (4 hours drive) It was a waste of time! He said that Davunatide would not be available by perscription next...

I just returned form seeing the neurologist. (4 hours drive) It was a waste of...

LyndaEllis

•12 years ago

3 Replies

Would be interested to know if anyone with PSP uses a U step walker frame? if so has it been helpful and did you have to fund it yourself?

interested in funding in the UK

PSPA_JillL

•12 years ago

7 Replies

Brentwood Support Group - PSP Awareness Week

As our next Brentwood Support Group falls on Saturday 28 April, and falls at the end of PSP Awareness Week, we are going to have A Tea Party for PSP. We will...

As our next Brentwood Support Group falls on Saturday 28 April, and falls at the...

jennifer-nind

•12 years ago

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Any advice on sleeping flat or at an angle please

Mum is just recovering from her first bad bout of pneumonia. In hospital we were told that she should sleep with the bed head at a slight angle but now she is...

Mum is just recovering from her first bad bout of pneumonia. In hospital we were...

Swifty

•12 years ago

11 Replies

The story behind my daughters Marathon for PSP.

My daughter, Becca, is running in the London Marathon for PSP next Sunday. My father, Ray, suffered with PSP and passed away 7 years ago. He lived...

My daughter, Becca, is running in the London Marathon for PSP next Sunday. ...

Daria

•12 years ago

11 Replies

any info on trials using dopamine?

LyndaP

•12 years ago

4 Replies

More accidents and incidents

The last few weeks has seen more dear husband slip further into the grips of psp. His swallowing, coughing and chewing are all becoming more and more difficult...

The last few weeks has seen more dear husband slip further into the grips of psp...

Peter3

•12 years ago

7 Replies

Maureen Hurst

Just wanted to let everyone know we lost my beautiful brave mum on 12/02.2012 at home peacefully with us all with her although it wasnt expected at all. She...

Just wanted to let everyone know we lost my beautiful brave mum on 12/02.2012 at...

demii

•12 years ago

11 Replies

the move is finally happening to No 1

hi all i have finalhy got my date for movigninto the ground floor flat monday april 30th Out of my apt and Into the loca pub for 2 weeks....

hi all i have finalhy got my date for movigninto the ground floor flat ...

jillannf6

•12 years ago

28 Replies

unable to talk quietly

My husband's speech is becoming less clear but the most distressing part of the speech problems is his inability to talk at a normal level. If I dont...

My husband's speech is becoming less clear but the most distressing part of the ...

gp1943

•12 years ago

8 Replies

The Belfast PSPA Support Group is on Tuesday 24th April from 14.00 to 16.00

The group is for people affected by PSP or CBD, their families, friends and carers to meet, give support and have the opportunity to chat informally, make new...

The group is for people affected by PSP or CBD, their families, friends and care...

PSPA_DeborahW

•12 years ago

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New PSPA Support Group in Wimbledon takes place on Saturday 14th April 2012 from14.45 to 16.45

This is a new group led by Kate Weston and Marisa Robertson, both of whom have personal experience of PSPA and are active PSPA members The group is for people...

This is a new group led by Kate Weston and Marisa Robertson, both of whom have p...

PSPA_DeborahW

•12 years ago

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Camberley PSPA Support Group is taking place on Thursday 26th April 2012 from 10.30 to 12.30

Please come along and support this group which is for people affected by PSP or CBD, their families, friends and carers to meet, give support and have the...

Please come along and support this group which is for people affected by PSP or ...

PSPA_DeborahW

•12 years ago

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Coventry PSPA Support Group is taking place on Wednesday 25th April 2012 from 13.00 to 15.00

Our PSPA Nurse Specialist, Kat Haines is leading the group, and the aim is to give support to carers, families and anyone with PSP or CBD. You have the...

Our PSPA Nurse Specialist, Kat Haines is leading the group, and the aim is to gi...

PSPA_DeborahW

•12 years ago

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Leicester PSPA Support Group is on Tuesday 24th April 2012 from 11.00 to 13.00

PSPA Nurse Specialist, Kat Haines is leading this group which is for people affected by PSP or CBD, their families, friends and carers to meet, give support...

PSPA Nurse Specialist, Kat Haines is leading this group which is for people affe...

PSPA_DeborahW

•12 years ago

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Pocklington PSPA Support Group in on Saturday 14th April from 10.00 to 12.00

The group is for people affected by PSP or CBD, their families, friends and carers to meet, give support and have the opportunity to chat informally, make new...

The group is for people affected by PSP or CBD, their families, friends and care...

PSPA_DeborahW

•12 years ago

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anyone in or near blackpool with or care for someone with psp? would be nice to meet up x

emazros

•12 years ago

2 Replies

peter or peepee as my daughter calls him xxx

my mum finally fell head over heels in love only 2 years on peter was diagnosed with parkinsons, nearly 4 yrs ago diagnosed with psp,he was my mums boss at...

my mum finally fell head over heels in love only 2 years on peter was diagnosed ...

emazros

•12 years ago

3 Replies

Is there anything that helps with hallucinations?

My father suffers from hallucinations lately.For about a week he asks us continuously to help him stand up.Then he walks to the door and he tries to go out...

My father suffers from hallucinations lately.For about a week he asks us continu...

john_z

•12 years ago

10 Replies

I have PSP THE doc has diagnosed.I have PSP for the last 8 months.My eye closes and I have a feeling that Ihve fallen sleep

I have cough and spondylisys Are cough and spondylisis because of PSP. Can ahyone though light on these issues

I have cough and spondylisys Are cough and spondylisis because of PSP. Can ahyo...

kpsmail

•12 years ago

7 Replies

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Posts - PSP Association | HealthUnlocked

PSP Association

All posts for April 2012

South West London PSPA Support Group, next meeting to be held on Saturday 12 May in Wimbledon

It's difficult to cope with PSP

Frank now at peace & free

PSP Awareness - Honk if you have PSP!

How to stop someone with PSP pulling out the PEG constantly?

pee pee (peter)

London Marathon.....

Any benefit from taking Mirapaxen and Madopar

Awareness Week 2012 – ‘ A Million to beat PSP ‘

Atropine Drops

The Neurologist

Would be interested to know if anyone with PSP uses a U step walker frame? if so has it been helpful and did you have to fund it yourself?

Brentwood Support Group - PSP Awareness Week

Any advice on sleeping flat or at an angle please

The story behind my daughters Marathon for PSP.

any info on trials using dopamine?

More accidents and incidents

Maureen Hurst

the move is finally happening to No 1

unable to talk quietly

The Belfast PSPA Support Group is on Tuesday 24th April from 14.00 to 16.00

New PSPA Support Group in Wimbledon takes place on Saturday 14th April 2012 from14.45 to 16.45

Camberley PSPA Support Group is taking place on Thursday 26th April 2012 from 10.30 to 12.30

Coventry PSPA Support Group is taking place on Wednesday 25th April 2012 from 13.00 to 15.00

Leicester PSPA Support Group is on Tuesday 24th April 2012 from 11.00 to 13.00

Pocklington PSPA Support Group in on Saturday 14th April from 10.00 to 12.00

anyone in or near blackpool with or care for someone with psp? would be nice to meet up x

peter or peepee as my daughter calls him xxx

Is there anything that helps with hallucinations?

I have PSP THE doc has diagnosed.I have PSP for the last 8 months.My eye closes and I have a feeling that Ihve fallen sleep

Search posts

Latest poll

What are your main concerns as a carer?

Topics

Archive