Faces and Voices

[daddyt]

youtube.com/watch?v=94FscxV...(Not working as expected?)

Tim

[LuisRodicioRodicio]

Dear friends,

It has been exciting to relive in 7 minutes the same stages, similar family photos, parallel feelings of the hard process that my partner, who was my partner for 54 years, suffered and with whom we built a family that remained around her until the end.

My emotional and grateful memory for my partner Maria and a big hug for all the chat companions who accompanied us on this PSP trip.

Thanks to Nadia for sharing her experiences and thanks to Daddyt for his initiatives and sweet suggestions.

Luis

[daddyt in reply to LuisRodicioRodicio]

Oh Luis, I am so sorry for the loss of of your dear Maria. A big man-hug and prayers for now, and going forward.

Tim

[LuisRodicioRodicio in reply to daddyt]

Thank you Tim.

A big hug and luck.

Luis

[Richard33 in reply to LuisRodicioRodicio]

Luis

You provide so much advice and support to everyone on this website. And it is amazing you do this when English is not even your main language! You have been so good to share all that information you gained when you looked after Maria for all those years. Thank you and love from all of us to you.

Richard 🙂

[LuisRodicioRodicio in reply to Richard33]

Thank you Richard33 for your kind words.

My goal has been and is to provide suggestions as much as possible for caregivers and patients of this difficult disease.

There was so much loneliness, ignorance and the unexpected appearance of a surprising variety of symptoms in the difficult journey with PSP that I decided to collect experiences that could suggest to other people involved with this disease where to start weaving their particular solutions or palliative actions.

As long as I can and feel that it is positive for caregivers and patients, I will try to continue collaborating.

There are many others who make magnificent contributions. Bless them.

A big hug to all colleagues.

Luis

[Richard33 in reply to LuisRodicioRodicio]

And we are privileged to have the benefit of all your knowledge.......🙂

[AliBee1]

Wow Tim. Trust you to find and post something as powerful as this. Thank you. That's how I felt when Nigel died - that he had won. Love AliBee

[daddyt]

Hello Ali.

Actually, I didn't find the post, I was involved in creating it. I'm the Co-Chair of the Advocacy and Support Committee for the Coleen Cunningham Foundation - CCF, of which I am also the Board Co-Chair. Additionally, I am the facilitator of the PSP awareness.com global weekly support group on Zoom. The Faces and Voices campaign is a collective effort on my part, as well as my Co-Chair Peter Firmin (Australia) and other committee members.

Nadia - a journalist, reached out to me about four years ago and asked if would be okay if her mother diagnosed with PSP-Laura, could email me. You know the answer to that. Natalie also wrote a blog post featuring me, and my PSP journey.

Enough said on that. Natalie's video, among others, is the crux of the Faces and Voices campaign. This is the kind of awareness that will put PSP-CBD, MSA and DLB at the top of most social media feeds. This has been made possible through a Google Adwords Grant in the amount of monthly $10,000 US... that's a whole lot of awareness. And you know, I always say awareness creates understanding, understanding creates support and support drives research towards treatment, and ultimately, a cure. There's never been a time in the past for the PSP-CBD, MSA and DLB communities to be as hopeful, as there is today.

My dear Ali, I know you have a story to tell, please, share yours. Faces and Voices is for all... caregivers - past and present, patients, family and friends to share their story. Visit pspawareness.com and click on the top banner under Faces and Voices to learn more.

As always, CHOOSE HOPE

Tim

[AliBee1]

Wow - an even bigger inspiration for us all xx Brilliant funding too. Well done. I will look at the website during the week and I am sure that a lot of others will too. I replied to a previous post to Pine Eater and mentioned funding in that. Love AliBee x