saying hi

[Kell83]

hi my mum has been diagnosed with PSP, it’s taken me some time to reach out, so thought this group would be a massive help for me to deal with this.

[wolfdogs]

Hi,

I'm so sorry that your mum has been diagnosed with this horrid disease!

Welcome to the forum, you will find tons of support and plenty of information and answers to questions as you go along this journey.

I am also in the UK, my mother has PSP and we are in approx year 6.

There is also a very good Facebook group for support and advice. You will only find good advice and warm support with love from fellow group members.

This can be a hard journey and very lonely sometimes, but it's also a good place to vent frustration where everyone understands.

[Kell83 in reply to wolfdogs]

Thanks so much for your warm welcome, I will be reaching out to you all.

[MGLB in reply to wolfdogs]

Please can you share the link to the Facebook group?

[Kelmisty]

Hi,

From a daughter of Mum with PSP and CBD in the UK, welcome to the group no one wants to be part of.

It’s a tough journey both physically and mentally supporting and caring for your parent, whilst also dealing with your own emotions and life.

Feel free to reach out this group is helpful and Facebook groups are too.

X

[Millidog]

Hi Kell83, like others have said welcome and do use this site for anything you need... ask as many questions as you need. It's also worth searching through old posts, reading daily posts to help you gleen lots of useful info and you can search by subject to get quick answers to questions you may have.

If you haven't already ..do call the PSPA helpline for a chat. Don't worry if you don't have anything specific to ask . When my husband was diagnosed I rang them and said "I don't know what I need to know can you help?" They are great and are happy to chat through any concerns, give you specific advice on things you can do, things to set up, services to contact etc

[Kell83 in reply to Millidog]

That’s great, thanks I’ll contact them too.

[marychiz68 in reply to Millidog]

Thank you for your words.

[WifeLilyRose]

My late husband died of PSP in 2022 and I totally agree with Millidog re. the amazing, unique support the PSPA offers. I was my husband's full-time carer and the emotional and factual support helped me so much to cope with this little known condition. All sorts of useful leaflets are available to pass to various health professionals with whom one will interact, who very often know very little about PSP and also helped me to cope with the unpredictability of the PSP journey. I wish you strength. You are not alone.

[Kell83 in reply to WifeLilyRose]

Thanks so much, and thanks to everyone for taking the time to reach out to me

[marychiz68]

dear Kelli. Though I was diagnosed in 2022.. my legs were stolen many years before that. I reach out to you…

Thank you, chiz.

[Birdie04]

Hi I too am also in the UK. Im so sorry to hear about your mum 🙏 my husband was diagnosed with CBD mid December "24, he is 60. Like you, it took me awhile to reach out, but know we are all here to listen, lean on vent frustrations to and more than ever support one another through this uncertain time.🙏♥️