Posts - PSP Association | HealthUnlocked

PSP Association

9,252 members • 11,348 posts

All posts for April 2018

I made it to Lanzarote...........

Walked to the park this morning........ 70 degrees with a warm breeze. This taken when a cloud came past. More pictures later XXX Patrick.

Walked to the park this morning........ 70 degrees with a warm breeze. This take...

Bargiepat

•6 years ago

30 Replies

CBD oil and more frustration

I received Provocan CBD oil with great anticipation. I weaned Dan off of his morning daily dose of Carb/ levodopa. Although we never saw much change with...

I received Provocan CBD oil with great anticipation. I weaned Dan off of his m...

Karynleitner

•6 years ago

25 Replies

Eating is optional for my sister

My 52-year-old sister has been in a nursing home since July 2017 when she couldn't be cared for at home with her PSP. In December 2017 she began receiving...

My 52-year-old sister has been in a nursing home since July 2017 when she couldn...

Pagesofwords

•6 years ago

51 Replies

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PSP mostly affect Men

Do you agree with info from different PSP associations on line saying that PSP affect mostly men?

Do you agree with info from different PSP associations on line saying that PSP ...

SuzanneA

•6 years ago

8 Replies

Cure PSP Family Conference in Rochester

just wondering if anyone in the U.S. is planning to attend this conference on PSP/CBD/MSA at the end of June? I am seriously considering it and would love to...

just wondering if anyone in the U.S. is planning to attend this conference on PS...

taihde

•6 years ago

13 Replies

Recognising PSP

Sadly I lost my identical twin sister with PSP. We cannot get the disease recognised on the death certificate. Heart failure was the only recorded illness. We...

Sadly I lost my identical twin sister with PSP. We cannot get the disease recogn...

Tunupup

•6 years ago

23 Replies

Diet and illness

There is a huge amount of work being done now on diet as a key factor in illness. I know quite a few folk here know quite a lot about this... I'm a bit...

There is a huge amount of work being done now on diet as a key factor in illness...

Kevin_1

•6 years ago

3 Replies

Applying for CHC now? - You need the old Decision Support Tool. + Some tips about why you need it and how to use it.

Have you got an assessment for Continuing Health Care coming up? The Gov. website has taken down the outgoing Continuing Health Care Framework and the DST...

Have you got an assessment for Continuing Health Care coming up? The Gov. websi...

Kevin_1

•6 years ago

9 Replies

NHS funded nursing care - If you can't get CHC you should be offered this.

A request for Continuing Health Care should always be the first route to try. If you fail do consider appealing. If six months have gone by since the...

A request for Continuing Health Care should always be the first route to try. If...

Kevin_1

•6 years ago

11 Replies

Occupational Therapist

Hi All, My Father was finally diagnosed with PSP on Friday, for 4 years I have known that something was drastically wrong with him and I was seeing him...

Hi All, My Father was finally diagnosed with PSP on Friday, for 4 years I have k...

Kerrywhite75

•6 years ago

8 Replies

Changes at Beacon CHC Advocacy Service - It's getting better - Drink tea.

Hi Folks The Beacon NHS (arms length) Advocacy service has just won another contract from the NHS. I'm not quite sure what this means - but they have added...

Hi Folks The Beacon NHS (arms length) Advocacy service has just won another cont...

Kevin_1

•6 years ago

1 Reply

CHC changes are coming... Keep calm and drink tea.

Hi folks There has been an attempt to clean up the confusion in the CHC process. The new, modified, National Service framework has to be adopted by the...

Hi folks There has been an attempt to clean up the confusion in the CHC process...

Kevin_1

•6 years ago

19 Replies

power of attorney

has anyone had dealings with power of attorney I have been reluctant to do this as I felt I was taking decisions out of geoffs hands but now one or two...

has anyone had dealings with power of attorney I have been reluctant to do this...

wheelrace

•6 years ago

19 Replies

Don't want to join this group! (Ranting about diagnosis)

We saw the neuro today, at the end of a four-week levodopa trial to see if my husband has regular Parkinson's vs CBD or other atypical parkinsonism, and I was...

We saw the neuro today, at the end of a four-week levodopa trial to see if my hu...

LostinHeadSpace

•6 years ago

17 Replies

Slow Progression PSP-P and MR Parkinsonism index predicts vertical supranuclear gaze palsy in patients with psp-parkinsonism

Hi. well we went to neuro opthalmologst and after having a look said what made them make a diagnosis of PSP? "There is no indication of PSP and tends towards...

Hi. well we went to neuro opthalmologst and after having a look said what made t...

daffodil48

•6 years ago

24 Replies

Clearing a nose when someone cannot blow

Dear All I had a break from decluttering for the anticipated move and took Nigel to the Hampshire PSPA meeting where we had a marvellous talk by a Speech and...

Dear All I had a break from decluttering for the anticipated move and took Nigel...

AliBee1

•6 years ago

4 Replies

CHC funding .... almost accepted 😁

Just had my assessment to see what they can provide Mum. They are putting forward 5 nights and 1 hour per day for washing, dressing and administering...

Just had my assessment to see what they can provide Mum. They are putting forwar...

Sarah1972

•6 years ago

12 Replies

Daughter of newly diagnosed PSP patient

Hi, I'm new here and welcome any advice or recommendations on PSP, my dad is 75yrs old and recently diagnosed after a 12 week stint in hospital with a delirium...

Hi, I'm new here and welcome any advice or recommendations on PSP, my dad is 75y...

Concerneddaughters

•6 years ago

11 Replies

Photo of Christine47 and Enjoysalud at UCLA today

Hi, Christine47 and I (Enjoysalud) discovered that we live within 90 minutes of each other (given the traffic in Los Angeles). Today we met half way at UCLA....

Hi, Christine47 and I (Enjoysalud) discovered that we live within 90 minutes of ...

enjoysalud

•6 years ago

30 Replies

Are carers needed for a hoist?

My father has PSP and is currently in hospital following an aspiration pnuemonia. He was able to walk around whilst holding someone's hand / arm or a frame...

My father has PSP and is currently in hospital following an aspiration pnuemonia...

pink_flamingo20

•6 years ago

34 Replies

Can physical symptoms just take a sudden turn for the worse?

Dear all, seeking some understanding of mum’s sudden deterioration. Last few days Mum has not been good she has shown symptoms as if she has had a stroke but...

Dear all, seeking some understanding of mum’s sudden deterioration. Last few da...

Greens

•6 years ago

9 Replies

Unable to clear mucus from throat

My husband coughs non stop, his throat muscles are too weak to bring anything up. I have heard that travel sickness patches can help dry up mucus and also...

My husband coughs non stop, his throat muscles are too weak to bring anything up...

Rocksbeb

•6 years ago

11 Replies

Time scale

My Wife, in her mid 70's was diagnosed with Parkinsons some 4 years ago but earlier this month was re diagnosed with PSP so we are on another learning curve....

My Wife, in her mid 70's was diagnosed with Parkinsons some 4 years ago but ear...

PSPA

•6 years ago

12 Replies

George

Well another night with not being able to sleep, George chest sounds awful, he is coughing, but asleep, sounds horrible, don’t want him to suffer like this....

Well another night with not being able to sleep, George chest sounds awful, he i...

Yvonneandgeorge

•6 years ago

53 Replies

Soursop and causing Parkinsons and PSP

I have read quite a few articles on the belief that drinking and eating the Soursop fruit can contribute to Parkinsons and PSP. Tonight I was watching a...

I have read quite a few articles on the belief that drinking and eating the Sour...

daffodil48

•6 years ago

6 Replies

Weight loss 2 and a very big thank you.

Hi all Thank you for your wonderful support to my post about Liz's weight loss. I passed all of you love and well wishing onto Liz. She raised an eyebrow and...

Hi all Thank you for your wonderful support to my post about Liz's weight loss. ...

Kevin_1

•6 years ago

23 Replies

CHC - DST meeting advice

Good Evening Everyone, It has been a very long time since I posted, my earlier posts of being in shock over my dear Dad's diagnosis seem a long time ago now. I...

Good Evening Everyone, It has been a very long time since I posted, my earlier p...

Didalju

•6 years ago

1 Reply

You Can Never Love Enough

This is what I've learned through this long PSP journey. I get medical professionals from Hospice and family saying they know I love my husband but I'm too...

This is what I've learned through this long PSP journey. I get medical professi...

Cuttercat

•6 years ago

48 Replies

General Anesthesia for surgery can cause or worsen cognitive problems

Read this article about how anesthesia can affect cognition in elderly patients and people with neuro degenerative illnesses. My husband had gallbladder...

Read this article about how anesthesia can affect cognition in elderly patients ...

daffodil48

•6 years ago

10 Replies

Caring for a male with PSP

Looking for tips on the care of a male with PSP. Looking for way to ease his day promote healthy living .

Looking for tips on the care of a male with PSP. Looking for way to ease his day...

mfratto

•6 years ago

4 Replies

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Posts - PSP Association | HealthUnlocked

PSP Association

All posts for April 2018

I made it to Lanzarote...........

CBD oil and more frustration

Eating is optional for my sister

PSP mostly affect Men

Cure PSP Family Conference in Rochester

Recognising PSP

Diet and illness

Applying for CHC now? - You need the old Decision Support Tool. + Some tips about why you need it and how to use it.

NHS funded nursing care - If you can't get CHC you should be offered this.

Occupational Therapist

Changes at Beacon CHC Advocacy Service - It's getting better - Drink tea.

CHC changes are coming... Keep calm and drink tea.

power of attorney

Don't want to join this group! (Ranting about diagnosis)

Slow Progression PSP-P and MR Parkinsonism index predicts vertical supranuclear gaze palsy in patients with psp-parkinsonism

Clearing a nose when someone cannot blow

CHC funding .... almost accepted 😁

Daughter of newly diagnosed PSP patient

Photo of Christine47 and Enjoysalud at UCLA today

Are carers needed for a hoist?

Can physical symptoms just take a sudden turn for the worse?

Unable to clear mucus from throat

Time scale

George

Soursop and causing Parkinsons and PSP

Weight loss 2 and a very big thank you.

CHC - DST meeting advice

You Can Never Love Enough

General Anesthesia for surgery can cause or worsen cognitive problems

Caring for a male with PSP

Search posts

Latest poll

What are your main concerns as a carer?

Topics

Archive