June 2009

San Francisco- right place at right time

by Emily in

We’ve been staying at the Godwins amazing condo in Soma (South of the Market), which has made navigating through the city and meeting COYOD a breeze. Below is a picture of how excited we are. THANK YOU KATHY AND BILL!!!

Max and Em in SF condo

On Thursday just before we got the news of Michael Jackson passing, we met and interviewed Sarah Fairhurst (pictured below), who’s father has Young Onset Alzheimer’s. Sarah shared how her father’s extremely positive attitude has continued to dominate through the disease, and he loves to ride his bike to Peet’s Coffee where everyone knows him or will get to know him.

Sarah and Max

At our COYOD gathering last Tuesday we met Ericka Smith, who works at the Alzheimer’s Association. Ericka facilitates a Young Onset support group in Berkley, and we were luckily in town for the monthly meeting. Ericka sent out an email to the group that encouraged COYOD to come, and we met 7 people affected that night.

Earlier this month we met a man on our way down the coast who told us about Jazzheimer’s- a nonprofit that provides Jazz music to people with Alzheimer’s (see: jazzheimers.org). We were luckily in town for Jazzheimer’s monthly “Fish Fry” performance at Western Addition Senior Services Center. We filmed the band and crowd reactions- which were priceless- and interviewed Jazzheimer’s founder Marlina Tiech.

Friday night we were invited to dinner at Becca Posamentier’s home. Becca’s mom has Young Onset Alzheimer’s, and we spent about four hours talking about everything.

Saturday morning we met with COYOD- Andrea Contreras and her boyfriend Omar (pictured below)-at Tartine, which is the best pastry place in San Francisco. Andrea’s dad has Young Onset Alzheimer’s, and the four of us shared many similarities and it felt good to talk about it all. Even though the topic is heavy, it’s like going to therapy when you meet other people dealing with the same challenges.

Omar and Andrea

Another lucky coincidence was a woman we met in Portland, Aysha Ghazoul, was in town for the “Pride March” this weekend. We met Aysha through Rebecca- who’s a COYOD we interviewed in Portland. Aysha shares lots of common interests, including biking and documentary-making. Only she is a legit filmmaker, check her debut documentary “My American Grandmother”: http://www.arabfilm.com/item/100/. Aysha is going to join us for Boston to New York to help film.

Max and Aysha

Lastly, we were in town for a benefit show for Paul Williams- the founder of rock magazine Crawdaddy! who is suffering from Young Onset Dementia (see: paulwilliams.com). We’ve been emailing with Paul’s wife, singer/songwriter Cindy Lee Berryhill, and she told us she’d be in town for this event- which was great because otherwise she’s based in San Diego. We filmed part of the show and met Cindy. When Cindy was on stage, her songs reflected the hardships of Paul’s decline and it was incredibly moving. In addition to Cindy, there were a number of other artists showing their support, including John Doe. Max was starstruck by John Doe because of his appearance in “Great Balls of Fire”, and asked for a photo.

John Doe and Max

Now my mom is here and we are getting ready to catch a train back to Seattle tomorrow. We’ll be home for the month of July for a couple of weddings, a nephew to be born, a fundraiser, COYOD interviews, and some down time before our August 1 plane ride to Boston.

Emily and Mom (Maryanne)

San Francisco COYOD

by Maxim in COYOD, San Francisco

Yesterday the 23rd we met with four COYOD at a pub called the Little Shamrock in the Sunset District. The group was wonderful. We told them briefly of our project and it naturally flowed into a conversation about life with parents affected by Young Onset Dementia. We shared tough struggles as well as comedic anecdotes. All four women has a mother with Young Onset Dementia. So needless to say my father and I were the odd ducks. We exchanged info and planned to film their stories later in the week. It was a huge success!

We Made It

by Maxim in San Francisco

Elle (guest biker), Emily and Max

A shout out to the Dads

by Maxim in

Nick Baker (Ellen Crowley’s Cousin) arranged a 25 mile bike ride on Father’s Day. It was nice to lay down the gear and ride on what felt like a feather. A barn party was awaiting us when we were done. Thank you Bakers for everything.

Untitled from Spoke Your Mind on Vimeo.

COYOD in Santa Rosa

by admin in California, COYOD

We met an incredible family in Santa Rosa who is impacted by their mother, Maureen’s, diagnosis of Lewy Body Disease. We stayed with Aunt Helen, Maureen’s younger sister, who introduced us to Maureen’s three children: Marty, Jamie and Andi (pictured below). Thanks to Aunt Helen we conducted 6 interviews, spent time with the family, and got an intimate look at their story. The experience was priceless.

Kelly (Jamie's awesome girlfriend and our new friend), Jamie and Emily

Emily, Marty and Max

Emily, Andi, Jamie and Max

Conversations with strangers

by Emily in North Coast

Between pit stops at cafes and campsites, we’ve encountered a number of people. It’s almost always a mutual exchange of information, or sometimes a good fortune.

The State Parks make it easy to meet other travelers. There’s a hiker/biker camping section that’s $4 a person in Oregon and just $3 a person in California. Steal! We had our first hiker/biker experience in Florence. That’s where we met Brad, a Californian who dropped his car off with his daughter in Eugene and was biking back to San Jose in 2 weeks. He was pushing 80 miles a day.

Max and Brad

As we rode from Crescent City through the Redwoods, we kept bumping into a couple riding in the same direction. They had a slightly lighter load, using buckets as saddle bags and a tarp as a tent. They were the hare and we were the tortoise, and after a number of run-ins we decided to camp together. Their names were Lucy and Emil, and turns out they just moved from Bellingham to Olympia.

Max, Emil and Lucy

When we rolled into Ferndale, we planned to camp at the fairgrounds but got distracted by a guitar playing from across the street. That’s how we met Reuben and Mallory. They offered a place to crash that night. Mallory fixed us up an amazing breakfast the next day.

Mallory and Emily

The morning of our biggest climb near Leggett, we ate some breakfast at the Peg House. We chatted with Gary, the owner, about Spoke Your Mind. He donated a freshly baked brownie and cookie for the cause, and the sugar helped us up the 4-mile hill. We need to go back to Peg House because they are rumored to have the best burgers in all of America.

After 60 miles of physical challenge, we soaked in a hot tub in Mendocino. That’s where we met Frank and Suzie, residents of Fort Bragg. Frank used to be an anchor and Suzie is a social worker. Now Frank is trying to connect us with a woman who works for public radio.

The other night we met two Veterans at the hiker/biker camp. At first we thought these two were a pair, but turns out they’re just both wanderers and we were graced with both their presence that night. Arthur (Art) had been traveling for 30 years around the U.S. and was now 73 and finally ready to return to society now that the Republicans are out of office. Ed left from Seattle on a customized bike to hold his cane and coffee mug with a Bob Trailer to carry his load. He has no end date yet. Ed enjoys meeting other bikers and seeing what they use- and he was certain we had the biggest load of any he’s seen yet.

We stayed up listening to the two tell endless stories about the wars they served, the way it used to be, and so forth. Both had drastic attitudes about the world- Art thought we were progressing forward with human rights and Ed thought the government was out to track us all down. We learned a lot from these two. Art told us about land squatting and Ed said you need to read history to find out where gold was lost- and his plan is to go find some in Nevada somewhere. When we got a chance to speak, we told them about our project. Well, Art said his batteries burnt out a while back- enough to light a whole city- but now he’s back and senility is just a part of aging.  And Ed told us to use the old methods, because if they worked for hundreds of years then they must be right.

Last night we bumped into Ed again at the next campsite. He was happy to see us and gave me a turkey feather. Sweet man.

Ed and Emily

But before reaching camp last night, we stopped at a cafe to email. We met a local named Harrison, who was a jazz musician and told us about a project called Jazzheimer’s. A San Francisco woman started Jazzheimer’s to play music in different homes for Alzheimer’s patients. We’re going to try to hook up with them while we’re in town. Small world indeed.

Reflections on Oregon

by Maxim in

One month ago yesterday we left Seattle. We have travelled over six hundred miles, cycled in three states, crossed 8 bridges (in the photo is the highest in Oregon), fixed seven flat tires, sailed upon four ferries and rode one bus. It has been one of the longest and exciting months of my life. Two weeks ago we left Portland. Life on a bike allows plenty of time to reflect…

The intensity of Portland came fast and strong. We arrived Friday night and by Monday we were introduced to at least four COYOD and the majority of the crew from the Oregon Chapter of the Alzheimer’s Association during the showing of  The Alzheimer’s Project. The night before Emily and I watched the first segment of the HBO series and it set the vehement tone for the coming week.  We interviewed five stories. During two of them we were able to meet the person with Young Onset Dementia. These five meetings and interviews happened over the course of seven days.

The feeling of comradery is very comforting when hearing of others similar experiences. Though with each story told I am constantly reminded of my father and his disease. The repetition of facing my own experiences with my father’s disease over and over is emotionally exhausting. This goes beyond story sharing with other COYODs but with everyone we tell of our project. It is a daily event. There is a difference between facing the disease through observing  my Dad than explaining to a stranger how destructive Young Onset Dementia truly is on a person and their family. The latter allows me to put an outside perspective on the reality of Young Onset Dementia. It also allows me to understand how it is affecting me not just my dad. I stress to everyone who is struggling to talk about a difficult topic to speak. A story has tremendous power.

Today we crossed into California. We have ahead of us four hundred and thirty miles until San Francisco. Thanks to all who have helped make this happen.