PSP Association
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Hi its my 73 year old mum who has this evil cruel condtion she was diagnosed about 3 years ago.At the moment shes in a care home after breaking her pelvis six weeks ago and last week her hip.She really has been through the mill lately what with one and the other.But one of the things that doesnt help is the complete lack of knowledge that the medical profession seems to have.Every body thinks its dementia its a help having a site like this for guidence.cheers Al

8 Replies

Al, the Pspa have some very good publications and leaflets they can send you which can be passed to carere and medics etc. I found them hard to read at first but ultimately really helpful. Chrissie


I downloaded all the information I could.and gave it to nurses and the manager. Also the practice manager at mums gp surgery as there were 7 gps and we needed someone consistent who understood and could help negotiate with other professionals. I also kept a brief run down of needs in mum's room. Also necessary is to take basic info with mum on visits and hospital stays and revisit care plan with staff at least monthly due to the progression of the illness. I can send you info if you are having trouble finding what you need.


It's so good that you continue to help so many other daughterno1. You half a wealth of experience .

I have been doing a similar thing . Keeping up to date with records , which isn't always easy . Trial and error !

When my husband went into hospital I took all written information blow by blow . I thought they might think me a busy body but it was the opposite They were very grateful and said it made their job so Much easier down to th physics and occupational therapists .


Great that u rvboth doing so much !

Lolo jill :-)


Hi Wendal,

I can only reiterate what daughter no1 and cabbagecottage say. I too give information to any new health care professional we come into contact. When my husband went into hospital last year,I made a list of every thing he would need and explained that he understood everything being said to him, however, he would have problems answering and that staff needed to give him time. This worked very well and the care he received was very good.

So much of my time is spent telling people what this condition is about, but I work on the basis, the more who know the better it will be in the long run for others.


Hi - I am sorry to hear about your mother but (although this doesn't help much) be assured that you are not alone in finding that the medical profession and care staff have a 'mental block' when it comes to knowledge of PSP. My 90 year old mother was diagnosed with PSP in April 2011 and, four months later, she had another fall which, on that occasion, resulted in a broken neck. She was in hospital for over four months during which time I lost count of the number of medical professionals - from the consultant downwards - who had never heard of PSP let alone knew how to treat a patient with this ghastly illness. Upon discharge from hospital, I reluctantly had to agree to her moving to a nursing home because, by this time she was on a PEG feeding tube and her mobility was considerably less than when she was admitted to hospital. The nursing home staff had little or no knowledge of PSP and it appears to me that the care (as opposed to nursing) staff treat her as if she has dementia which she does not. During the last two years, her level of mobility has reduced to nil, she is no longer able to speak and, in the past few weeks, her condition has worsened in that she is in bed 24/7 and has difficulty getting rid of secretions which means that the staff have had to use suction to clear her throat. The information I have received from the PSPA has been a great help and I have passed relevant literature to the nursing home and the GP as well as leaving the small cards from the PSPA in my mother's room. PSP is a cruel and lingering way for anyone to end their life. I visit my mother frequently and it remains heartbreaking to see a once happy lady, who always presented a friendly smile to everyone she met, just lying there unable to eat or drink or to show any emotion or sign of recognition.


Haven't heard from gill recently hope you are ok


Nobody Knows the Trouble....go the words in this well loved Gospel song. NOBODY KNOWS!

And that's what I've heard all thru' my brides PSP malady from MD's all over .

All today's messages are about nursing staff, Doctors, the whole medical profession who live in ignorance of PSP/CBD. Yes, its an orphan disease, no cure ,no treatment yet, but hope. You who leave booklets ,flyers, cards, info about PSP are on the right track to getting the word out. And our wonderful PSP Associations are happily providing us all with much ammunition to spread the news.

The PSP Association in London recently held a Worlwide Conference on PSP....Marvellous,Excellent...When will the US association do likewise? And the Europeans?

Like MLKing I have a dream...I can see the time come when we'll have a PSP National Day given over to this devastating malady. That Public Television will talk about it. That all Neurologists will spot PSP at a glance.

Who knows, all this talk may also stimulate Big Pharma to spend on researching an antidote!

Well,I can dream can't I?

best to all,b


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