Alzheimer's Association

A Reason to Hope Breakfast Video

by Emily in Film

Spoke Your Mind has been collaborating with the local Alzheimer’s Association chapter over the past three months to help with a short documentary project they’re screening at Benaroya Hall in Seattle next month. The event is called “A Reason to Hope”, and this video will highlight four stories (including the Larkin family) to spotlight the humanistic and hopeful side of Alzheimer’s disease.

This process has been rewarding because it’s helped keep up the momentum for our own documentary, and I’ve gotten to know some incredible people. Elise Ricci is the main force behind the documentary segment, and the two of us have been meeting regularly to discuss the purpose and feel for this piece. Aside from filming our own story, Max and I filmed the Nornes family and through that befriended another local COYOD named Arlene. Arlene’s father Pete is a retired commercial fisherman and is now living with Young Onset Alzheimer’s.

Me, Arlene and Pete Nornes eating smoked crab

Elise and I met up with Arlene and Pete down at the Fisherman’s terminal in Ballard back in December to film the “Annual Holiday Smoked Crab” event. I felt a strange sense of belonging down at that terminal- hanging with a bunch of Norwegians (I’m part Norwegian myself) and eating seafood that I thought, “I love how filming can carry people to so many random and beautiful situations…” I am confident this documentary piece will indeed be hopeful.

For more information on the breakfast, visit this link.

November is National Alzheimer’s Disease Awareness Month

by Emily in

A local UPS grad made this short clip that shines light on Young Onset Alzheimer’s.

Check it out:  “My name is Lisa”.

Leaving DC

by Maxim in Hosting, Virginia

Today we are packing up, putting on our raingear and pedaling out of Washington D.C. After spending 5 weeks in the Northeast, it is time to venture into the South. Our destination is Richmond, Virginia. Previously, my Northwest mind would never had considered Virginia a southern state, but upon realizing that Richmond was the capital of the Confederate States our Southern adventure is upon us quicker.

DC has treated us very well. We have met very wonderful and powerful people within the Alzheimer’s movement. We have captured a number of diverse stories including, a woman with Young Onset Alzheimer’s, an 11 year old daughter of a man with Young Onset Dementia and two Music and Art therapists.

Us, our pigs and the monument

We owe a huge thanks to Brett, Nina, James, Sonya, and Vito for letting us house and Vito sit while they were on vacation.  It was a tremendous help in giving us a base to move around the city. I have bonded with Vito and he will be in my heart forever. It is hard to say goodbye, but I have memories to get me through the longing.

Max and Vito

Thank you to the Alzheimer’s Association here in the capital area for connecting us to the right places and to everyone else who has helped us so far.

Katie, George and Em

P.S. Here is a photo of Katie, a high school friend who let us stay with her for a couple of days. Next to her is George, who is a fellow cyclist who we met on a bike path. He recently got back from a 400okm tour from Athens to London. He gave us a cycling tour of the city.

The Sparks family

by Emily in COYOD, Frontotemporal Dementia (FTD)

We once again have been graced by an active Alzheimer’s Association here in the greater DC area. Max and I went to the National Capitol Area Chapter last Thursday to meet with Tammy Reardon, who immediately began scheduling us interviews during our stay. We also learned that we were in town for the welcome home party for Kendal Sparks from The Unforgettable Journey, a project that involved a cross-country bicycle tour to raise money for the Alzheimer’s Association. I heard about Kendal from Keri Pollock with the Western Washington Alz. Assoc. chapter just as we arrived into Portland during Leg 1. I talked to Kendal on the phone back in May, and we were hoping our trips would overlap. Turns out our timing was right and we went to his party and met his wonderful family and friends. Kendal, along with his cousin Amelia who joined him for part of the tour, told many stories of meeting friendly people along the way and what life was like on the road. There were many parallels between their experience and ours, especially how refreshing it is to be greeted by Americans in all parts of the country who are genuinely willing to help. Kendal also has an American flag on the back of his bike like Max, and we both felt that through our experiences we felt a strange sense of patriotism that we never had before touring. So often you hear and read about the terrible things that happen between people, and the acts of kindness rarely make the headlines. It was a real treat having the opportunity to relate to so many things with Kendal and celebrating his completion of an “Unforgettable Journey”.

Max, Kendal, Me and Amelia

The two influences for Kendal’s trip were his grandmother who died from Alzheimer’s and his uncle in Alabama who is living with Frontotemporal Dementia (FTD). Kendal’s cousin and cousin-in-law flew in from Alabama for his party, so we got to meet these “COYOD” briefly. They told us they saw our video on The Wedekings, and that it was a very difficult to watch considering their dad is still in the earlier stages of FTD- whereas Vaughn Wedeking was much further along. However, they also said that as hard as it was to see the progression of FTD in Vaughn, it began conversation around planning within the family. As Max and I listened to their situation, we were amazed that a family in Alabama was using our video in some capacity to learn more about their own father. But it was tough to stand there and know that the video also created negative emotions because of course it’s not easy to watch later stages of a disease when you’re not yet there with your own parent. We just hope the videos, and the videos that we will make post-tour, will encourage action and bring understanding. All-in-all it was an incredible evening and we were thankful we were in town for it.

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.

NYC Chapter

by Emily in

We were forewarned by other chapters that the NYC Alzheimer’s Association office is a “Mover and Shaker”. Yesterday Max and I were greeted by the staff and spent nearly all day learning about their fantastic programs. In one day alone, we had an hour-long discussion with the staff about Spoke Your Mind, interviewed a woman who has Young Onset, and attended a support group for spouses of Young Onset Dementia. We were sent off after an amazing day with a packed schedule this week full of opportunities for Spoke Your Mind, and two books on dementia: “Still Alice” and “Partial View”.  No doubt they moved and shook us. We are so thankful!

Last few days at home and now… Boston!

by Emily in

July in Seattle flew by with celebration after celebration. We celebrated two weddings, some birthdays, a newborn baby and positive news on Max’s aunt who’s battling cancer. It was a joyful visit packed with love.

This last Thursday Max and I stopped by the local Alzheimer’s Association office to visit the brilliant and compassionate faces who have offered so much support for Spoke Your Mind. Here’s a pic below:

(Back row) Patricia Hunter, Keri Pollock, Max; (Front) Emily, Elise Ricci, Nancy Dapper, Linda Whiteside

We had all day Friday to pack our stuff to get ready for our flight the next morning. Max boxed the bikes and bob trailers while I uploaded footage and backed it up on the hard drive. It takes real time to upload, and we needed to free up space on the computer for this leg. That’s all boring stuff- but what’s exciting is how Max managed to carry all our stuff to the van cab in Boston. What a man!!

Now we’re getting ready to interview Dr. Graboys on Wednesday and speak at an event held by the MA/NH Alzheimer’s Association chapter on Thursday. Although we had anxiety before leaving this time considering our lack of funds for leg 2, it feels good to be in Boston and we’ve already met some wonderful people. Keep the good vibes coming…