Psp

[Sunnyday68]

My wife has PSP.Wanted to hear from other people with similar experiences

[Hidden]

Welcome. Any thing specific you wanted to know about?

Everyone has a different experience with this disease which if you have started to read the posts you will have seen.

[Christine47]

Ask us anything.

[Martha_k_uk]

Welcome, and I'm sorry that you have the need to use this forum 😔

My advice...read, read, read and read some more. There is scarily little knowledge out there about PSP, especially amongst the 'professionals'.

Research all you can, utilise this site, search the posts and ask all the questions. We all understand and someone amongst us usually has the knowledge to help.

Wishing you lots of luck and strength x

[enjoysalud]

Hi, I agree with all the other replies. Start reading the sharing and postings. Get acquainted with the site and how to use it. For example...the bar SEARCH PSP ASSOCIATION......put in a subject and it will bring up past sharing.

I think it would be helpful if you were to tell us a little bit more about yourself. What city and country do you reside? How old are you and how old is your wife? When was your wife DX? What symptoms do you see?

There is no pattern as to when or how the symptoms present themselves. I lost my 55 year old son to PSP, May, 2017. I posted PARKINSONS TO PSP. It gives you a simple sequence of when and how the symptoms developed. I live in Los Angeles, CA, USA.

There have been shares by caretakers of their loved ones participating in either the BIOGEN or Abb-Vie clinical trials. I encourage you to read their shares....very encouraging and promising.

Best to you

[Hidden]

Oops - Sorry I posted under Liz's log in - will repost under my own.

Deleted this.

Kevin, Liz's husband.

[Kevin_1]

Hello Sunnyday

My wife has PSP and she wrote about her experience of it.

Remember that everyone is a little different and her symptoms are highly likely to be different from those your wife might expect.

There are many other posters who are afflicted.

But here are her posts.

healthunlocked.com/user/lizab

Better to start with the older ones. PSP is in reverse order

When we first got 'our' diagnosis we were in shock. We didn't know what to expect. So we posted our worries and concerns and this wonderful community gently steered us through.

You've read the PSP Assoc. articles? They are very good.

It's good to have an idea of what might happen so that you can stay one step ahead of the illness. Preparing ahead is very important both emotionally and in practical terms.

I do hope this is of some help. A PSP diagnosis is not the end. There are still good times to be shared and good memories to be made.

Best to you both.

Kevin

P.S Liz is still going - She is troublesome and tells me off still - I love it!

We still share good things even at this late stage and the love and sharing doesn't stop.

We were preparing for the 'soon to come Neurologist appointment' today... I asked her about her capacity to understand... She gave me such a dirty look! I ticked the box a little sheepishly!

[LuisRodicioRodicio]

Hi Sunnyday!,

I am sending by internal-private mail our experiences with PSP hoping could be usefull

Hug.

Luis

[LostinHeadSpace]

Sunnyday, I'm also one of the newbies, but let me tell you, the people in this community are incredible. So supportive, and they know more than the doctor about the day-to-day real concerns.

[raincitygirl]

Welcome Sunnyday,

I'm one of the CBD-spouse members. Looking forward to hearing more from you, and hope you find this site as helpful as we all have. If there's anything we can help with, let us know!

Welcome to the Tribe

Anne G.