My mother

[Catlover1]

My mother has just been diagnosed with psp today not sure what the future holds

[Yvonneandgeorge]

Welcome to the best site ever, you will get answers from amazing people, my husband was diagnosed in 2015, without these amazing people I don’t know where I would be. Sorry to have to welcome you to this horrible illness, but there will always be someone here to see you through this horrible journey . Yvonne xxxx

[Catlover1 in reply to Yvonneandgeorge]

She is already showing very slow eye movement and stiffness she's had some bad falls which has affected her confidence a lot as well as choking when she swallows her spit we are waiting on some medication that will help her with her stiffness she's been told to come back to the consultant in 6 months time but he said it's going to get a lot worse over time

[crab2093]

First you need to research, ask questions, talk to others on this site because they understand, find out about services in your area, look out for equipment depending on how far down the track your mother is, be patient and keep calm. Good luck. .. Val

[Yvonneandgeorge]

My husband also has the coughing and choking, no more falls, he is in a wheelchair now. Where do you live? So sorry you are going through this. If you are worried ask to go back and see the consultant, what about your GP also get the district nurses involved. Yvonne xxxx

[raincitygirl]

Dear Catlover,

You will find so much information in the historic posts on this site. I constantly look at the older posts (7+ years worth) to get information that helps me. If you don't know how to find historic posts, just let us know - we'll show you the way.

Also, one of the best things about this site is the community of supportive people who have experienced exactly what you are going through right now! They are in the very same place, or have progressed further down the line, or have completed the journey and still check in and offer wisdom. We will all encourage you to share your fears, questions, and any background you want to.

Welcome!

Anne G.

[easterncedar]

The diagnosis is a shock, and then you start learning how to cope. You will. This is a wonderful community for helping with it all. Please stay in touch. We are here for you. Peace, Easterncedar

[JA10]

Hi Catlover1

I am also on this forum as a carer for my mum, I don't always comment but always read and the members are amazing and know so much. If you are ready to look at the future, the PSPA has a good website, if you are in the UK. They have packs that they will send to you that contain lots of information about symptoms, managing and the future. In the US there is curePSP, I have not looked at that site but I have heard it is good.

It can take a while to come to terms with everything, my sister has only just got to the point where she can talk about the future, after Mum's diagnosis a few years ago.

Best wishes.

[BandT]

Hi, I am sorry you have had to join this site. However, it's a great community, full of supporting people. Take some time to come to terms with the diagnosis. It's not the end, just the start of a new chapter......full of challenges and changes. But your mum will remain your mum, she just may need a bit more assistance. B xx

[Hidden]

Welcome Catlover to a group no one wants to belong to, wealth of knowledge and experiences here.

Ask away,cry,scream,what ever helps you through this journey.

Dee in BC

[Kenfa]

I'm sorry to hear that you are dealing with this nightmare of a disease.