CurePSP at Mayo Clinic

[DeDeDickson]

Would love to know if anyone is here in Rochester at Mayo Clinic for the CurePSP Seminar tomorrow.

xoDorie

[Abrecheisen53]

Hi Dorie,

Just found out about the seminar this past Tuesday during our monthly Cure PSP support group. Not enough time to make arrangements. Did you go?

Alice

[taihde]

We are here, my daughter and I. Just arrived tonight and staying at a very basic hotel downtown. Hope we make it tomorrow as there's not a single clock in our "suite" - thank goodness for cell phones.

[Abrecheisen53 in reply to taihde]

You’ll have to let us know about it!

[DeDeDickson in reply to taihde]

I kept looking around to see if I could identify a woman and her daughter. Sorry we didn’t connect. What did you think? It was pretty cool, wasn’t it?

[taihde in reply to DeDeDickson]

It was very good. Except for the Chinese doctor who was way over my head. Especially enjoyed the mindfulness presentation. Pretty cool that they will be posting everything online also. Just wish that there were a few more hopeful signs as far as a treatment/cure.

[DeDeDickson in reply to taihde]

Totaling agree. I definitely got lost with his presentation. The man who asked a question regarding his mom having MSA was sitting at our table, so I was glad someone was listening. 😉

And, yes, the mindfulness presentation was so positive!

[crab2093]

Wish we were ... but

1- we did not know

2- we live in North Eastern Australia

Is there a link? There are so many questions and so many unknowns.

We would love to hear about it all...

When you have time!

... V & Ch

[Sayer]

Be very aware of anyone who say they can 'cure' PSP.

[johns65]

Would be interested in knowing what you learn at this meeting in Rochester. I know it is to late for me to go as my husband Jim passed away in March from PSP, and I only live a short 40 miles from Rochester, Mn. When he first started to have symptoms, we went to Mayo - never got any help. I'm And went to the MN VA and they found his PSP right away and then lived in hell for two years before leaving us. Wishing you good luck. Joyce in Minnesota

[Karynleitner]

We were there three times last year for Dans testing and diagnosis. I was excited and would of loved to have gone. It has become more difficult too travel. PleAse bring back any information you can.

[Greenkerrycounty]

I’ll give another thumbs up for you to share the information as much as possible. I hope it is a good conference. Anything hopeful would be wonderful news

[DeDeDickson]

The conference is now four+ hours over and I rated it “very good”. It is still so heavy in my mind but I assure you that I will process all of the information (gathering the slides from the presentation) and share it here. My thoughts, at this point, are to mention that Bob and I had attended a Parkinson’s seminar just last week at the Medical College of Georgia and I honestly felt disconnected from those suffering from that disease. As for me, I don’t relate to Parkinson’s ... a disease that one can medicate and live comfortably for a number of years. Instead, today I felt like I was home ... one of those comfortable situations where you knew you are with people who get what you are going through.

xoDorie