Seattle

Cast Your Vote!! (Neuro Film Fest)

by Emily in Film, Neuro Film Festival

We submitted a video titled “The Music in Hugh: A Look at Young Onset Dementia” to the Neuro Film Festival. There’s a contest for audience favorite, and we’d love your vote! Please see below for details.

Voting Has Begun! Cast Your Vote for Fan Favorite

The entries for the 2010 Neuro Film Festival are in and public voting for “Fan Favorite” begins February 17, 2010. The Neuro Film Festival is a contest by the American Academy of Neurology Foundation to help raise awareness through video about brain disorders and the need to support research into preventions, treatments and cures. The entries highlight compelling videos from patients and their families and caregivers about living with a neurologic condition. Voting closes on March 17, 2010.

Voting is easy:

• Step 1: Visit youtube.com/neurofilmfest and log in using your YouTube username and password to view entries. If you don’t have an account yet, sign up now, it’s quick and easy! Gmail users can sign in using their Google username and password as well.
• Step 2: Once logged in, rate each video in the playlist using the star system in the lower left corner, near the play button. Comments have been turned off to allow each video to stand alone and ensure fairness in judging.

The winner of the Fan Favorite award will receive a $500 prize. Two other winners will also be awarded for their filmmaking skills and creativity, as decided by the festival’s jury. A selection of the top videos will be screened at the Neuro Film Festival in Toronto during Stop Brain Disorders Week beginning Sunday, April 11, 2010, in conjunction with the Academy’s 62nd Annual Meeting, the world’s largest meeting of neurologists.

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.

New Blog Focus

by Emily in photos

We originally set up this blog for the “Spoke Your Mind Bicycle Tour” to share stories from the road. And so with the end of our tour last September, also came an end to our active blog posts.

However, despite our stagnant blog, we have been very active offline here in Seattle. And now with a new place and name for this blog, we will share all things relating to Young Onset Dementia from here on out.

We encourage those who are curious what we’ve been doing the past few months to watch our latest SpokeTube video “Spoke Your Mind: In a Nutshell”.

Updates to come…

-Emily and Max (pictured below with our dads)

Stay tuned…

by Emily in COYOD

It’s been a month since our last posting on the blog. In that month Max and I quickly found paying jobs and a place to live, and finally feel bit organized in West Seattle. We’re now able to upload our footage and begin sorting through some of the COYOD stories we collected.

We’re currently working on a video update that will explain Spoke Your Mind’s past, present and future. So stay tuned for that sometime in November…

World Alzheimer’s Day

by Emily in World Alzheimer's Day

Yesterday was World Alzheimer’s Day.

I encourage everyone to watch this simple and powerful clip by Alzheimer’s Disease International.

Sarah’s influence on the birth of COYOD

by Emily in COYOD

We first met Sarah Krueger back in January due to a happenstance that ended up being pivotal for Spoke Your Mind’s mission. Last December Max and I spent a day in the downtown Seattle REI bicycle section doing research and figuring out what the hell we all needed for this (at the time) idealistic endeavor. The poor victim that day was salesperson Robert, who patiently listened to all my outlandish questions that painted “amateur” on my forehead. After asking Robert advice for how to carry and protect a semi-pro camera and computer, he raised his brow and asked why we needed all this junk for a bike ride. I explained the purpose, which at the time was focused just on Young Onset Alzheimer’s. After jotting down notes and prices, we said thank you to Robert and left.

The very next day, I needed a new bike tire because I rolled over a screw. So I popped back into REI, and dear friend Robert was there. He helped me with my tire selection and as he was ringing me up he said, “You know, I was thinking about your project after you left. My girlfriend’s mom has dementia. It’s not Alzheimer’s, but let me give you her info because I know she’d love to talk with someone.” And that was the beginning of COYOD (Children Of those with Young Onset Dementia). In conjunction with the Sarah discovery, we had a conversation with Max’s mom Beth about the labeling of Alzheimer’s disease because nothing is absolutely certain until autopsy. So why narrow it to only Alzheimer’s? When the reality is the symptom of dementia impacts families the same regardless which disease is diagnosed. Beth also helped us think of focusing on a specific population to serve, giving the example of a woman who started a site called “Alzheimer’s Spouse”. After thinking about it, we realized we want to find other young adults in our situation. From this, we broadened our mission to Young Onset Dementia, and narrowed the target population to children. And voila, Spoke Your Mind.

So we met up with Sarah back in January, and after hearing her story over lunch Max and I left feeling uplifted and more clear than ever on the purpose of Spoke Your Mind. Sarah is an inspiration. Being an only child, the responsibility of taking control of her mom’s life situation fell on her shoulders. Sarah was living in Seattle with Robert when her mom began to show symptoms of dementia. Her mom was living with and taking care of Sarah’s grandmother who has Alzheimer’s in Memphis, TN until Sarah moved them up to their current beautiful dementia care home in Lynwood, WA. When we met Sarah in January the doctors diagnosed her mom with Frontotemporal dementia, but the latest is now Alzheimer’s.

This last Monday we met up with Sarah and drove out to visit her mom and grandmother in Lynwood to capture some footage. We had a great time getting to know Caroline and Deborah. Here’s a pic below.

Caroline, Max, Emily, Sarah and Deborah

Sarah’s story is powerful and will undoubtedly help others going through a similar situation. We are so grateful we connected with her while we were back this month. Thank you Sarah!

Crossing the Columbia

by Maxim in

Friday May 8th, Emily and I woke up on the north bank of the Columbia River with ambitions to forge. We took to our bicycles and began to climb the Lewis and Clark bridge. The bridge carried us over the river, a much easier task than done previously by the pioneers for which the bridge is named. Nonetheless, the shoulder of the bridge was small and pieces of wood and bark blown from the passing logging trucks scattered our path. The wind blew with might, as did the trucks that roared passed us only feet away. The bridge not only brought us over the water but into the state of Oregon where we pedaled later that day into Portland.

Mile 100

by Emily in mileage

Mile 100 from Spoke Your Mind on Vimeo.

Tip of the day

by Emily in Bike tip

Pick out glass shards from your tire with a dentist pick… it avoids this. Thanks Cameron from REI!

Olympia Hospitality

by Emily in Hosts

The trek from Tacoma to Olympia was less eventful than day one. But we experienced a drastic shift between tranquil Steilacoom to the practicing shooting brigade at Fort Lewis.

We were greeted by Max’s aunt and uncle Jane and John Wingfield, in Olympia last night with a van to carry our sloppy bob trailers and bikes to their warm home. Yes, we cheated for a few miles…

After cleaning up we ate more than our usual portions of chicken and pasta salad. Then around 7pm a group of about 10 lovely people showed up to hear about Spoke Your Mind and our endeavors. Max and I gave a presentation by walking through the website on a large monitor screen. After watching the SpokeTube video the group opened to discussion. It felt like a safe and welcoming environment for people to share input and ideas, and Max and I gained a lot from this small but powerful group. We hope to connect with them in the future.

Thank you Jane and John for organizing!!!

Now we must press on…