Books

[terridaniel]

Good evening.

I am new here.Have been trying to find out about books concerning PSP.Does anyone have an idea where can I get some information(not using Internet) from?

Thank you all

[easterncedar]

So sorry. I don't know of any books, but the PSP organizations in the US and UK send packets of information, and folks have found them helpful.

[aliciamq in reply to easterncedar]

Amazon etc - lots of books!

[aliciamq in reply to aliciamq]

Sorry - they were Parkinson's books not PSP!!!!😬

[aliciamq in reply to aliciamq]

Someone on FaceBook keeps posting info from a good medical journal he may have paid for ~

[terridaniel in reply to aliciamq]

Can I have a link, please? Thank you

[rriddle]

Check out our list of top resources for PSP:

brainsupportnetwork.org/edu...

The three or four resources that detail the number of pages are all available in print. You can either print them out yourself or request a copy be mailed to you from the publisher.

[terridaniel in reply to rriddle]

Very useful.Thank you.

[skoe]

Hi Terri, I would suggest you go to pspassociation.com where you will find detailed information on PSP and CBD.

Regards

Simon

[terridaniel in reply to skoe]

The link does not work.Thank you

[Kevin_1 in reply to terridaniel]

Hi

Here is a link to that place which should work.

I have read much and find the articles here are just about the best.

Waiving

Kevin

pspassociation.org.uk/for-p...

[Tippyleaf]

Have you tried Last Dance at the Savoy by Katherine Leigh Scott. She is an actress and writer.and this tells of her husband's PSP journey. I listened to it as an audio book which she narrates. I have recently re-read and relate to even more of her story than previously.

Love Tippy

[enjoysalud in reply to Tippyleaf]

I bought it, read it, and did not like it. I found 90% of it a waste of time.

[laila123]

duddly moor has a book out found it helpfull

[skoe]

Sorry

pspassociation.org.uk

Simon

[terridaniel in reply to skoe]

Thank you.

I have read the whole site already.What I am looking for are real/paper books.

[Kevin_1 in reply to terridaniel]

The problem is that this PSP a fairly new thing and now it is in the spotlight the research is exceptionally fast moving.

Writing to publishing time means that any paper book is pretty out of date by the time it hits the press... fast track typically one year, usually longer.

What are you looking for?

If its care and symptoms PSP Assoc. and the collective information from this site are about the best.

If it is clinical then you need to seek out online clinical publications. They too are pretty behind.

There has been an international agreement amongst the major researchers. They met up and divided up the research areas so that there would be no duplication other than Scientific review by replication.

Additionally PSP has cross overs with Parkinson's and Alzheimer's. So their research is being considered too.

Fast moving.

If you can say precisely what you need information wise someone here might be able to help.

I do hope this helps

Kevin

[terridaniel in reply to Kevin_1]

It is mainly home care and food care that I am looking for. I want to help and make the life of my best friend diagnosed with PSP as easy as possible. Thank you

[Kevin_1 in reply to terridaniel]

Hi terridaniel

I understand. Seeing our loved ones through this and making sure they get every advantage and help is so important to us carers.

I respect where you are coming from.

For what it's worth: We are fortunate in having superb tertiary neurological care (international standard specialist unit for care and research) and very good primary care support locally.

However I have to say the best day to day advice and support comes from this forum.

It makes sense really. Carers here each have their own support network, neurologists and primary care input, across a few continents. Additionally they research and, when that is pooled it becomes a formidable source of information.

Well that's my take. I too read widely and sought out every niche bit of research and information I could find. It is a valuable thing to do.

I am sorry you and your loved one have this burden.

I wish you well.

I do hope you will come back and share your learning with us all.

Warmly

Kevin

[skoe]

Please contact the HELPLINE at PSP Association as below. Staff are there who can provide you with specific literature on PSP.

Helpline and Information Service

How to contact us:

Email: [e-mail]

Telephone: [phone]

[terridaniel in reply to skoe]

Will do that immediately.Thank you one more time.

[jillannf6]

IAGREE!

LOL JILL

XXXXX

[Hidden]

Hi Jill, So pleased to see you are still posting. I hope you are doing well and are a happy bunny as you always seemed to be when I was posting regularly. Lots of love to you. Anne xx