My story

[Flowers2024]

My beautiful sister in law has after a long journey been diagnosed with PSP initially a Parkinson diagnosis a year ago after many falls, but in February a consultant neurologist confirmed this awful disease. She is now at the Palliative care stage. It's heart breaking watching her decline.

[messier]

I’m sorry you find yourself here with your sad news. I hope this diagnosis helps you and her family to better understand and support her. This forum is a remarkable group of people, who share our experiences, and ask the questions that no one else can answer other than people here who are walking in our footsteps. Please take time to search old posts as there’s a wealth of advice.

[Sun-flowerwearer]

hello Flowers2024. I’m sorry you’ve had to join us but it’s a wonderful resource for information and support. Ask any questions you want and you will receive experienced advice.

The PSPA is a brilliant resource if you haven’t found it yet and they will welcome phone calls and advice too. They have booklets full of valuable information and a great website.

My husband was diagnosed with Parkinson’s plus in August 2022. The GP recognised it was something more so referred us to neurology. We went privately initially due to long waiting lists and my husband got his formal diagnosis of probable PSP in May 2024. I joined this group and contacted the PSPA at that time. There is a lot to understand as it’s a very unpredictable and complex disease.

Reach out to GP for referrals to OT, Speech and Language and physio now even if you don’t think your sister is at that stage. The more phone numbers you have the better!

[ElMarsam in reply to Sun-flowerwearer]

I just shared info about a book of poetry on PSP, which besides offering poems that are very poignant about this disease, it contains lots of facts about the disease and useful links too. It is available on Amazon - title is Hummingbird - Poetry on PSP & Parkinson's. Author's name is Simpson.

[45purple]

Hello Flower 2024 sorry to hear of your sister in laws diagnosis. It’s a hard journey for her and her loved ones. You are not alone 💜💜

[Flowers2024 in reply to 45purple]

Thank you but it seems a very lonely place for her. Bless her x

[45purple in reply to Flowers2024]

I feel the same with Karol he just seems to be at a loss. Vacant looking as if not sure where he is.😢💜

[AliBee1]

I am so sorry to hear this. I think messier has summed it up very well. It is an international 'family' x I am pleased to hear that she is receiving palliative care as she should then get consistency of professionals. She's obviously so lucky to have a lovely sister too. Love Ali Bee x