PSP Conference Day One

[Cuttercat]

The first afternoon has been Support Groups. Some of us widowed and veterans of the disease helped newcomers and newly diagnosed. It was emotional but very good.

PSP staff has been lovely. Caring and kind.

Tomorrow will be more focused on clinical trials and caregiving as well as scheduling and doctors.

This website was mentioned so be prepared for more input. And please, those who have lost their loved ones, stay on. They really need us. I’m glad I went but.....anyway I’m glad I have all of you.

Cuttercat

[enjoysalud]

Thank you for the share. I appreciate your time and consideration.

I hope tomorrow when they talk about clinical trials they will give information about the latest results of some of the trials that are finished.

Los Angeles, CA, USA

[bazooka111]

Thank you for sharing

[Kevin_1]

Strength to you Cuttercat!

Looking out for your posts.

Great stuff.

[Willow_rob]

I will certainly stay on this site when our time comes to part. The strength it has given me must be shared with an unfortunate people who are cursed with this illness. Rob and Mary

[georgeg25]

I have stayed and will continue. I do not post very often but this forum has kept me sane and given me the strength to keep on keeping on. Thank you and God Bless you all. xxxx

[Hidden]

Thank you for going & sharing... You are strong & compassionate... l know this is difficult for you & yet you march on in hopes of helping others & spreading the word about PSP as you go... Sending Hugs & Love... Granni B

[Ratcliffe]

Thanks for posting Cuttercat. I’m still here, but I go through phases where I find it very hard to read and post because it brings things back, but I’m fully intending to stay, as we can hopefully help everyone who is still going through it.

I also do little volunteering and fundraising efforts, small scale, just stuff like volunteering to cheer on the runners at the London Marathon.

I think many of us post PSP if you like find it hard to be on here sometimes, so I just go quiet until I am ready to post again.

I’ll definitely be there on the 28th though 👍

[Heady in reply to Ratcliffe]

Saw you in the PSPA mag, waving your clapper things!

I think lots of us are here, quietly reading, chipping in when it's something we think can help with.

Looking forward to seeing you on the 28th.

Lots of love

Anne

[doglington]

It sounds interesting but exhausting. I am looking forward to the next instalment !

X

[ncgardener799]

Hi Cuttercat, I was at the conference-it was amazing. Not sure which one of the wonderful supporters you are, but thank you for coming. You can private message me if you want to clarify identity.

[Dalyma]

I was also at the conference with my friend who's mother has been newly diagnosed with Lewy Body. There is a lot of overlap of information she was able to use for her journey. I found it extremely interesting, but exhausting. I got home yesterday and slept most of the day. Mary