Posts - PSP Association | HealthUnlocked

PSP Association

9,728 members•11,604 posts

All posts for July 2011

My first birthday without dad

I haven't written a blog before but today I felt I wanted to share something with you and I hope you dont mind. Dad passed away 6 weeks ago now and since that...

I haven't written a blog before but today I felt I wanted to share something wit...

•13 years ago

We are not alone - thank goodness!

When Mum was diagnosed with PSP we were told that it was very rare and nothing was known about it. I read as much as i could find - then had to stop as i was...

When Mum was diagnosed with PSP we were told that it was very rare and nothing w...

•13 years ago

has anyone experienced the final stages of this horrible disease. please read below. thank you cathy

my mum is in final stages of this horrible disease. we have been told twice now to prepare for the worst but she has rallied round. she goes into really deep...

my mum is in final stages of this horrible disease. we have been told twice now ...

•13 years ago

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Speech Therapy

My husband has difficulty in articulating clearly. I would like to explore speech therapy for him, Any ideas?

My husband has difficulty in articulating clearly. I would like to explore spee...

•13 years ago

Does anyone know why the PSP patients moan continuously?

Dave moans all day and night, but he says "No" when I ask him if he is in pain. Is there anyway to help him with the moaning. I sing to him and ask him to...

Dave moans all day and night, but he says "No" when I ask him if he is in pain. ...

•13 years ago

How do other carers deal with the "difficult" days?

How do you deal with the bad days? Please can somebody tell me? The past few days things have been very trying for both my husband and myself. I try so very...

How do you deal with the bad days? Please can somebody tell me? The past few day...

•13 years ago

my email says i have a message from Annette in Colorado but cannot find it!

•13 years ago

All going nicely???????

Frank seems to have settled in to care home, the staff are very kind to him, and helped celebrate his 89th birthday. A hoist is no longer needed to get him...

Frank seems to have settled in to care home, the staff are very kind to him, and...

•13 years ago

Sad Day Today

Visit with neurologist today. Dave has two neurologists and one says he should have hospice, the other neurologist did not disagree. I was also told that we...

Visit with neurologist today. Dave has two neurologists and one says he should ...

•13 years ago

Thrashing about at night and restless sleep

My husband is having a great difficulty staying asleep and he thrashes about and is very agitated at night. He ends up pulling out his catheter most nights...

My husband is having a great difficulty staying asleep and he thrashes about and...

•13 years ago

Accepting help.

After resisting the offer of outside help I've finally admitted it would make things easier and from tomorrow someone will come in the mornings to get my...

After resisting the offer of outside help I've finally admitted it would make th...

•13 years ago

where can i get good qualiity wrap around sunglasses?

i have a probbelm with light sensistive eyes and now have 2 wear rmy specs all the time/ where can i get some sunglasses 2 wear over my specs (clip on ones...

i have a probbelm with light sensistive eyes and now have 2 wear rmy specs all ...

•13 years ago

Good days and bad days. Today is a bad day.

ARGHHHHHHHHHHH!!!!! - Just needed to let that out! Dad is still shaken from the big falls he's been having recently and so are the rest of us. It seems to...

ARGHHHHHHHHHHH!!!!! - Just needed to let that out! Dad is still shaken from th...

•13 years ago

You too could raise awareness in your area...

Former school friends of Dudley Moore staged a school reunion in Dagenham in honour of the comic legend, raising funds for PSPA To read more, please click...

Former school friends of Dudley Moore staged a school reunion in Dagenham in hon...

Partner•13 years ago

GUILT

My ex husband (we separated after 43 years -amicably) suffers with PSP. I have been his carer for the past two years but he is now in a residential home. He...

My ex husband (we separated after 43 years -amicably) suffers with PSP. I have ...

•13 years ago

Finding things difficult.

PSP has reduced my once difficult, opinionated and awkward husband to a passive, unmotivated man. He was physically strong, very capable in a wide range of...

PSP has reduced my once difficult, opinionated and awkward husband to a passive,...

•13 years ago

dorothy-thompson

Before my husband was diagnosed with PSP last year, the family noticed a gradual unexplained decline in him. In some diseases, diagnosis can lead to a cure...

Before my husband was diagnosed with PSP last year, the family noticed a gradual...

dorothy-thompson

•13 years ago

Is anyone from the USA?

This site seems to be intended for people in the UK but there are a few brave souls in the USA, so I have to ask. If you are from the USA, please let...

This site seems to be intended for people in the UK but there are a few brave so...

•13 years ago

Such sadness

Yesterday I attended the funeral of my dear friend Pat, who lost her fight for life suffering from CBD. Such wonderful tributes were made by her family both...

Yesterday I attended the funeral of my dear friend Pat, who lost her fight for l...

•13 years ago

Eyes closed - so frustrating!

I'm the sole carer for my Mum, and I wouldn't change it for the world. But there are moments when I just want to yell at her and shake her. The most...

I'm the sole carer for my Mum, and I wouldn't change it for the world. But ther...

•13 years ago

must learn to walk before i run...........

What a giant step forward, went to care home to visit Frank and there he was, looking as pleased as punch in a wheelchair!. First time i had seen him out of...

What a giant step forward, went to care home to visit Frank and there he was, lo...

•13 years ago

What an awful year it has been so far.

For about three years my husband has been having a range of difficulties including unexplained falls. The falls he has been experiencing have been getting more...

For about three years my husband has been having a range of difficulties includi...

•13 years ago

Getting in Touch

Before I logged onto this site I didnt realise how many people there were relatively close to me with PSP, and I am sure there must be others who have not...

Before I logged onto this site I didnt realise how many people there were relati...

•13 years ago

Is PSP a disease of European origin?

Just curious, but does this disease affect all races? P.S. I do not want to start a race riot, but I am curious about the origins of this disease, so if you...

Just curious, but does this disease affect all races? P.S. I do not want to sta...

•13 years ago

what happened next

My mum has been dead for 2 weeks now. It's beginning to dawn on me that I won't see her again, that we can't hug and laugh together any more. Already I have so...

My mum has been dead for 2 weeks now. It's beginning to dawn on me that I won't ...

•13 years ago

Holidaying is possible!

Since this disease brings so much suffering and sadness, I thought that I bring a ray of sunshine, and fight the disease back in my own way by writing that it...

Since this disease brings so much suffering and sadness, I thought that I bring ...

•13 years ago

Thank goodness you are all here!

Been up since 2a.m. Nothing unusual about that, my nighttimes are not night anymore. I wake up thinking about Mum. She has had PSP for about 8 years I want to...

Been up since 2a.m. Nothing unusual about that, my nighttimes are not night anym...

•13 years ago

Views on video-ing my Dad.

I'm thinking about doing some sort of video with clips of my Dad and the day to day struggles, like having a conversation with him & watching him having help...

I'm thinking about doing some sort of video with clips of my Dad and the day to ...

•13 years ago

NEUROLOGY CHECK UP

Just a update on my visit to the neurology clinic today its the first time i have been for a check up at the clinic for just over a year, I went in 20 mins...

Just a update on my visit to the neurology clinic today its the first time i hav...

ray-wiffen-1958

•13 years ago

I haven't blogged in a while; A little update!

Sorry about my lack of blogging recently! I've been moving house and not had much internet access and had some re-sits to do etc. I went home at the weekend...

Sorry about my lack of blogging recently! I've been moving house and not had muc...

•13 years ago

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