I am new here, my mum recently diagnosed w... - PSP Association

PSP Association

7,026 members9,585 posts

I am new here, my mum recently diagnosed with PSP.

kerriegol
kerriegol

Hello Everyone,

My 76 year-old mum was recently diagnosed with PSP, but I believe she may have had this disease for quite a few years already. She does not have all the symptoms I have read about, which made diagnosis tricky, but she does have difficulty walking (she now walks with a frame), has had many falls, and is very muddled in her thinking process.

There does not seem to be much information on the internet regarding this disease, so I look forward to being able to share with you all here.

Thanks,

Kerrie

16 Replies
oldestnewest

I joined PSP group a few days ago and have gleaned some good advice so far. It's good to know you are not alone in this. Support is imperative 💛

kerriegol
kerriegol in reply to Althea-c

Thank you Althea-c. It's very sad that we are all on this site in the first place, but it's so good to know that support is here. x

Welcome to the best site ever, my husband was diagnosed in 2014, sure he had it a few years before, it has been a difficult road, but we have managed to adapt everything to suit him, he is now in a wheelchair all the time. Welcome and a big hug coming your way. Yvonne xxxx

Thank you so much Yvonne! X

Welcome.

My husband was diagnosed 2013.

You will find plenty of support here.

love, Jean x

kerriegol
kerriegol in reply to doglington

Thank you Jean. Sorry to hear about your husband, I hope you are coping ok x

doglington
doglington in reply to kerriegol

Its a struggle as I have to do everything for him. The most difficult thing is that he can rarely talk now so make the most of any communication you have !

love, Jean

Althea-c
Althea-c in reply to doglington

💛🙏

Kerrie, my advice

Be patient, be loving, lots of loving. If you get cross as you will, when it seems your loved one is not taking care and putting themselves into situations that are dangerous for them. Just remember. They can't help it

You do develop the patience of Job, but make the most of them while you have them.

It's such a cruel condition. Wouldn't wish it on your worst enemy

Xxx Gilli

kerriegol
kerriegol in reply to GilliW

Thank you so much Gilli, I will go back and re-read your message whenever I need to hear this. Really appreciate it. Kerrie xx

Althea-c
Althea-c in reply to GilliW

💛🙏

Hi Kerrie and welcome to the best advice centre for PSP although I'm sorry about your mum. My husband was diagnosed in 2014. I think you will find out more about PSP here than anywhere else.

Nanny857xx

kerriegol
kerriegol in reply to Nanny857

Thank you Nanny! So sorry to hear about your husband xx

Hidden
Hidden

This site seems to be the only way to get real life advice and understanding. This disease is a rollercoaster... thinking of u. My dad also has it.

kerriegol
kerriegol in reply to Hidden

Thank you Punk-in. So sorry to hear about your dad.

Althea-c
Althea-c in reply to Hidden

💛🙏

You may also like...