Jim`s story

[BEST7]

Hello everyone reading this, thank you first of all for taking time to do as as we all know how precious and valued our time is. I have joined here hoping to connect to other families affected by PSP and CBD, and to any in Northern Ireland where we are as currently there is no support group here. Dad was diagnosed in October 2018 with PSP after a Parkinson`s diagnosis and an Alzheimers diagnosis 4 years previous to that. So if anyone has any questions I am here, I may not get back straight away but my mum and I feel there will be more support from a forum such as this to help our family on their journey. Blessings x

[Hidden]

Welcome. Yes this is the place to get information. Ask any question. Vent when you need to get it out.

[BEST7 in reply to Hidden]

Thank you

[Nanny857]

Hi Jim, I'm in NI. I care for my husband who was diagnosed with PSP in 2014. I'm glad you found this forum as you will receive excellent advice/ help/ information and support from those who have been through and are going through what you are now experiencing. It's sad that the support group in NI folded which we attended and found very helpful. Hopefully it will get up and running again in the not so distant future. Best wishes Nanny857

[BEST7 in reply to Nanny857]

Thank you

[LuisRodicioRodicio]

Hi BEST7!

I'm sorry PSP has entered your family.

The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.

This disease manifests itself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.

I am not a phisicyan.

During the 7.5 years in which we lived with PSP I have been collecting our own experiences and that of other members of the chat to offer this notes as a suggestion to PSP patients and caregivers.

The information is made with good will and with the best technical criteria that I could contribute, thinking above all in the support of the caregivers

Wishing the best for you and your family and if the document with our experiences and our solutions can be useful, do not hesitate to let me know to send it by private mail through this chat.

Hug and luck.

Luis

[BEST7]

Hello Luis, yes we are grateful to receive any documents and are happy to share our experiences and knowledge too if it can be of any help at all.

Blessings

Julie

[Hidden]

I have found this forum to be full of understanding, informative & compassionate friends. Welcome to our group & visit whenever you feel the need & have the time.

Sending hugs. . .Granni B

[BEST7 in reply to Hidden]

Thank you Granni B...x

[teresa1988]

Hi Best7,

I care for my husband who was diagnosed with PSP 2 years ago, following a diagnosis of Parkinson's the year prior. We live in the USA.

You will find the members of this group to be informative, helpful, and caring.

Best wishes to you.