Cure PSP Family Conference in Rochester - PSP Association

PSP Association

9,176 members11,301 posts

Cure PSP Family Conference in Rochester

taihde profile image
13 Replies

just wondering if anyone in the U.S. is planning to attend this conference on PSP/CBD/MSA at the end of June? I am seriously considering it and would love to meet other people dealing with the same issues (CBD).

Written by
taihde profile image
taihde
To view profiles and participate in discussions please or .
13 Replies
Karynleitner profile image
Karynleitner

I received the information in a mailing last week. It looks like an incredible and informative seminar. Mayo is also an amazing place.

I am keeping it in mind, but doubt that it will be possible for me to attend.

I’m sure everyone on this sight will be happy to hear any new information . I hope you are able to attend and meet up,with others from this site .

Artteach10 profile image
Artteach10 in reply to Karynleitner

Didn’t know about it either. Can’t leave the house with Gene’s diarrhea. All tests are coming back normal. I am getting pretty anxious wondering if it is PSP and no hope for improvement. I hope someone can share information from the seminar. Take care Nancy

salem16 profile image
salem16 in reply to Artteach10

Do you have any information?

Mikey12345 profile image
Mikey12345

This is the first I've heard about it, but unfortunately I won't be able to go to Rochester.

I hope you can go and meet others who post here. I'm sure it will be interesting.

Liz

DeDeDickson profile image
DeDeDickson

Hi Taihde, I would so love to go. We are actually heading to Mayo tomorrow for my husband’s appointment on Wednesday. Although he expressed he wasn’t particularly interested in going to the conference, I told him I would save the flyer in case he changes his mind after our visit there this week. I will let you know.

xoDorie

taihde profile image
taihde in reply to DeDeDickson

Good luck at Mayo. It's quite impressive. I was thinking the conference would be a good opportunity to meet other people with these diseases because I find myself getting frustrated by how little support there is available locally.

DeDeDickson profile image
DeDeDickson

True that! Fortunately, this site has given me a new local friend, for whom I am so grateful!

Did you go to Mayo for your husband’s PSP? I’m curious which doctor you saw and how did you like him/her? We went last year when Bob’s dx was “only” Parkinson’s, so I’m not sure what to expect now that we have the hummingbird MRI.

salem16 profile image
salem16 in reply to DeDeDickson

What doc gave information? Can you provide information?

taihde profile image
taihde

Actually I am the one with CBD.

I saw a female doctor at Mayo. Anwar Hassan. She was very knowledgeable and spent quite a bit of time with us.

Debralyn profile image
Debralyn

We are considering it. We went to curePSP conference in Chicago last year. Jack went to group with others that were diagnosed with PSP, CBD and MSA. And at the same time I went to caregivers group. Just like this site, it is uplifting to meet with people who are going through the same daily issues as you are.

All the speakers were knowledgeable and there was a wealth of information available.

Rochester is quite far though so we will see as it gets closer.

Rochester is a great town! You can stay at hotels that are attached to Mayo Clinic through an underground system or just walk across the street at ground level.

taihde profile image
taihde

I hope you can make it. I found a very reasonable suite within walking distance so my husband and I are definitely making the trip. My consult at Mayo was in December in freezing weather so I'm looking forward to seeing it in warmer weather.

Debralyn profile image
Debralyn in reply to taihde

Lol. Yes jack was diagnosed at mayo,feb 2017. It was warm enough to walk around but I’m sure June will be better.

DenB profile image
DenB

When I read the title your post, I thought wow! A conference on CBD in Rochester, where I live, just a couple of miles from. Then I read on and realised that it was in Rochester,U.S, not Rochester, kent in UK......just a bit far for me to go! X

You may also like...

CurePSP Family Conference in Rochester, MN

If anyone is interested I just received notification that the videos of the conference are now...

PSP Conference - Attending Tomorrow

I'm attending the PSP Conference here in Raleigh, NC. It's the national PSP USA conference and will

PSP Conference Day One

diagnosed. It was emotional but very good. PSP staff has been lovely. Caring and kind. Tomorrow...

Just joined this morning CBS psp

I'm maxwell from east kilbride I have both psp and cbd I have alot of trouble with the condition

Cure PSP Information Session

where they will be addressing questions regarding PSP. I'm sure it will be very informative....