PSP conference in New York

This past weekend my husband and I attended the PSP conference in Flushing, New York, sponsored by Curepsp.

The first afternoon opened with a reading and book signing by Kathryn Leigh Scott, an actress who has a new book 'Dancing at the Savoy' coming out shortly - about her experience caring for her husband through his journey with PSP.

We then broke into patients and caregivers for support groups. It was the first opportunity my husband had had to meet other sufferers. Some were newly diagnosed, others had progressed further than him. There were about 10 in his group. Communication was obviously difficult for some, but wonderful for the all to find others walking the same walk. (Not literally!)

The support group for care givers was much larger as many with PSP were not able to participate and some had more than one family member with them. It was great to be able to talk face to face with so many in the same boat and share resources and ideas and frustrations.

The next day was more informational and research based with a lot of focus on current studies. The one really positive note I came away with was that scientists and researchers believe that understanding PSP could be the key to unlocking many neurological diseases, including Alzheimer's, so more importance will start being given to these studies. They seem very willing to include as many as they can who fit into the perameters.

Everyone we met was truly delightful, so I believe that PSP only occurs in really nice families!

There were also some vendors selling wonderfully helpful items: pads and underwear for incontinence, easy-on shoes with the whole heel opening up and clothing with zippers in every seam.

It was a 5 hour drive each way and of course I'm the only driver, but was well worth it. Thank goodness for gps!

Finoni

8 Replies

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  • Thanks, Finoni, for posting this. I wish I had been there. Maybe next time! I'd be glad of a heads up for that, if there is an opportunity. I think you must be right about the nice people: it's true that I have met through this site a large group of really wonderful and caring folks. It's not a small silver lining! Love, Ec

  • It sounds like a really positive experience. I hope your husband felt the same. Well done for driving all that way.

    X

  • Thank you so much Finoni for letting us know about the goings on at the conference in Flushing. Sounds as if it was very positive and worthwhile. That's really heartening !!!

    Take care , Elise

  • Thank you for the post. Iam glad someone here on this site got to go there! what did your husband think of it. Did he have questions; Did you? were those qs answered?

    I do hope you had a wonderful time....we are about 18 hrs from NY

    AVB

  • As you can imagine, it was a mixed bag for J. It was good to talk to others on a similar journey, but not easy seeing those who were farther along. He has actually been more resigned to his condition since having a massive heart attack at Christmas. He now knows he can just stop his heart meds when things have progressed beyond his endurance. He suffers a lot of pain from other ailments, so I cannot blame him.

  • Thanks for posting. I really should have made more of an effort to try to stand, as I serve on the committee at CurePSP that arranges these family conferences. But my wife is just not strong enough to travel any great distance and I can't leave her with someone else for more than 8 hours. Did they talk about each of the specific clinical trials underway? Such as C2N? That was the one I was trying to get my wife in. I haven't heard of any recent findings on any of these trials going on currently. I know they probably aren't supposed to divulge until the trial is fully completed, but seems like somebody would spill the beans if they were seeing positive results. Thanks again for attending and for posting your feedback. I will share this with my fellow committee members.

    Ketchupman

  • Hi Ketchupman, good for you for serving. They did say how badly they need volunteers, but also stressed that if you are currently a caregiver, they understand that all is you can manage at this stage in your life. It is those who have lost loved ones that they are looking to to start support groups etc.

    The docs were all out of Columbia Medical Center, so those are the studies they are recruiting for. They did not say how the current studies are going as they are all still recruiting. someone asked about Methyline Blue and was told there was no evidence of it doing any good.

    There was a plea to donate PSP-injured brains, as they are the key to the basic research.

  • That's really positive, the researchers looking into PSP to find answers for other diseases. I had hoped, in UK, the money going into finding a cure for Alhzlmers, would help us. But this makes far more sense. Understanding PSP, would be a HUGE step into the workings of the brain.

    Lots of love

    Heady

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