Aug
21
Some NYC highlights
by Emily in
(Not in order of importance.)
#1. Walking around the city
Times Square
#2. Meeting local COYOD
Max, Michael and Em
We met Michael Tuesday night and learned about his story. Michael’s dad was diagnosed with Frontotemporal Dementia (FTD) in February. We spent the evening sharing COYOD stories, capturing it on film, and eating Indian food. We were lucky we were eating during the crazy thunder storm that blasted through the area we were in and took out 100 trees in Central Park.
#3. The Metropolitan Museum of Art (the “Met”)
Looking at the Roxy Paine installation at the Met museum.
On Wednesday we interviewed Deborah Gaffe, a museum educator who helps run a program specifically for people with dementia and their caregivers called “Met Escapes”. After the interview we walked around the gorgeous galleries for hours.
#4. Being an NYC Alzheimer’s Association groupie
Paulette Michaud, Max, Em, Jason, Karen and Lynn
Someone joked that they’ll need to add a desk for us soon. We spent most of Thursday at the office. Paulette Michaud, the director of early stage programs, scheduled us an interview with a woman diagnosed with Young Onset Alzheimer’s named Karen (pictured above). Karen is a huge advocate for people with Alzheimer’s, and speaks to various audiences with Paulette. They call themselves the “Paulette and Karen” show. After we joined Paulette and Karen in a “Memory Works” class for people in the early stage of Alzheimer’s. Paulette leads the class with different memory and brain activities. It was a riot. The humor and camaraderie among the group is contagious. Even though we were only observing, the exercises were tough even for Max and I. As Karen mentioned in the interview, she looks forward to this weekly class because it allows her to feel “normal”.
After a quick lunch we popped into a training for non-family caregivers led by Nancy Hendley. Max and I told the group about the project, and it wasn’t until midway through the conversation that someone stopped us to clarify that we were on our bicycles. This was incomprehensible, and the reaction was priceless. After lots of laughter we got to learn a technique that’s called “hand-in-hand”. It’s difficult to explain in words, but will share it soon on film.
#5. Attending a discussion about the HBO Alzheimer’s Project with Producer John Hoffman
Em, John Hoffman, Max
Our finale to Thursday was going to the public library’s auditorium for a Q&A with HBO producer John Hoffman and Alzheimer’s Association’s Matt Kudish. We briefly met John, who learned about our project from Matt Kudish. John’s own father had Alzheimer’s, and he expressed that at first he was initially hesitant to do this project because of his fears of facing such a depressing disease. But as he was working with the NIH (National Institute of Health) on another HBO documentary, the scientists there pushed for an Alzheimer’s special because so there’s so much advancing in the area. So ultimately John could no longer run away from Alzheimer’s and dove straight in with the HBO series. He explained that the process of producing the project and learning about the “momentum in science” offered him hope. We thanked both John and Matt for their incredible work.