Cure PSP Family Conference in Rochester

[taihde]

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).

[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 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 in reply to Artteach10]

Do you have any information?

[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]

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 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]

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 in reply to DeDeDickson]

What doc gave information? Can you provide information?

[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]

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]

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 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]

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