July 2009

Sponsor Our Legs

by Emily in Boston to Austin, Sponsor Our Legs

As we gear up for Boston to Austin, we are pushing a new fundraising opportunity called “Sponsor Our Legs”. Max and I whipped up a fun video to explain this concept. Pasted below the video is the email we’ve sent out to our network, which is more explicit and addresses our urgent needs.

Dear friends of Spoke Your Mind,

We would like to take this opportunity to thank everyone who has supported Spoke Your Mind and helped to make it a reality. We returned on July 1 as scheduled from our first section of the bicycle tour, Seattle to San Francisco, and it was more successful than we imagined.

As you know, we aimed to connect and support COYOD (Children Of those with Young Onset Dementia) in three ways: on film, by personally linking individuals, and via our online community. Thanks to others willing to share their experiences, we were able to capture 12 COYOD stories in detail on film, as well as 5 interviews with professionals in the field. We’ve produced 4 documentary shorts of these stories which can be seen on Spoke Tube, and with which we’ll ultimately compile our end-product documentary. Because those we’ve met thus far found a need for resources and community, our online network for COYOD is nearing 50 registered individuals; family members of those with young onset are actively using it as a space to ask questions, share stories and exchange information. Needless to say, we are excited about Spoke Your Mind’s initial success and extend our gratitude to you for making it possible.

We receive emails weekly from those diagnosed with Young Onset Dementia or their family members. Though the notes come from all across the country, we see common themes of frustration with a lack of available resources and thankfulness for knowing that they are not the only ones struggling with this illness. As an example, a Texas woman recently wrote us:

“I was seriously having a terrible caregiver day with my dad who was diagnosed at age 59 in September of 2006 with Lewy Body Dementia and ran across this site. I am a 36 year old wife and mother of a 14 and 6 year old. If you are interested in hearing my story, I would love to tell it. As well as to read others, I think it would help so much. The day I listened to my dad plead and cry on the phone, begging me for his car keys, is the day that I grew up. Maybe our experiences can help someone, because on all of the forums, all you hear about are 70-somethings and their spouses. Even if I don’t hear from you, good luck and God Bless.”

Though we’d like to share all of those stories, we’ve anonymously excerpted a few at the end of this letter so we can share with you a more developed sense of COYOD needs.

Although Spoke Your Mind’s first leg generated many stories and continues to link COYOD, this was only possible because we met our fund raising goal. There are thousands out there who are caregiving for those with young onset and suffering in silence and isolation. As we begin our second section of the bicycle tour, Boston to Austin, we begin energized with the ambitious goal of reaching these people. Already, we are slated to speak at an Alzheimer’s event in Boston, have COYOD who’ve offered us interviews along the way, and have supporters scheduled to greet us in Austin.

Unfortunately, though, we only have enough funds to provide for the very first section the east coast tour, Boston to New York. We have skinnied our budget wherever possible to hit $3.20 per mile in overall expenses (documentary supplies & maintenance, food, emergency insurance, etc.), but we sincerely ask for your help in funding the remaining 6 legs of the tour and firmly believe that every $3.20 is valuable. Donations can be made here: http://www.mindseries.org/donate/

As an alternative to individual mileage contributions at $3.20 per mile, please consider participating with friends or as a team to Sponsor Our Legs. Sponsor Our Legs is a new effort that prices out each leg along the Boston to Austin route according to its mileage. Please contact us ASAP if you are willing to captain a group (your company, friends, cousins, family, etc.) to make our skinny legs possible. For instance, a group of 20 friends contributing $48 each would cover NYC to DC. Together, we can leave no leg uncovered on our way to Austin in support of COYOD!

As if that isn’t enough, we also ask that you consider spreading the word about Spoke Your Mind to others with whom we would not be able to connect if it were not for you. Thank you for all of your support.

Respectfully,
Max and Emily

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!

The weekend down south

by Emily in

Friday we drove down to Olympia for a Mind Series fundraiser put on by Max’s Aunt Jane and Uncle John. The event was located at their friend Tom Anderson’s art gallery, and local musician Jim Valley played a show. Max and his brother Dillon opened with a few of their dad’s favorite hits,  and as usual the rock n’ roll got Hugh belting out lyrics.

Hugh, Max and Dillon Larkin at Mind Series benefit show

Crew from the Mind Series benefit show

Saturday we drove further south to Portland, and zoomed past all the familiar pit stops we previously reached on bicycle during our first leg. We made the second trek because there was a Rock Against Alzheimer’s benefit show to raise money for the Alzheimer’s Association happening. We met the Rock Against Alzheimer’s team back in May when we biked in, and they switched the date around so we were able to attend. But before the show we met up with our friend Aysha Ghazoul (the Portland bar-owner, filmmaker, bicyclist who’s joining us from Boston- New York), and she took us to an annual “Crawfish Boil”.

Max with crawfish

The cornbread, red velvet cupcakes, rockabilly band and hospitality made this Southern neighborhood tradition a treat. It was the first time I ate crawfish. A delicious spicy mess.

Crawfish boil remains

We got to see Rebecca and Lynn Channer at the crawfish party, two people we met and interviewed during our previous Portland stay. A small-world occurrence happened a while back when the aforementioned Uncle John joined our online network, and it led to the discovery that the Channers know him. Weird!

Aysha Ghazoul, Lynn and Rebecca Channer, Emily

After the crawfish fun we headed to the Rock Against Alzheimer’s show with Aysha. Upon arriving we were greeted by the amazing crew including the founder Kenny Field (we interviewed him during our previous visit where he works at the caring Alzheimer’s residence Emerson House), Melissa Creger (who works for Alz. Assoc), Alex Luse and Heidi (both also work at Emerson House), and Lauren (who designed the buttons and shirts).

Rock Against Alzheimer's

Aysha brought her new camera, and we both filmed part of the show to practice our uploading techniques for the east coast. The Rock Against Alzheimer’s crew asked us to give a little speech midway through the show, so we did and Max told the crowd how his dad has Young Onset Alzheimer’s and music continues to get him going.

Max shooting the show

Kenny, Max, Lauren and Emily

We told our COYOD connections about the show, and Felicia and Greg Heaton joined us toward the end. We met and interviewed the siblings back in May, and it was great seeing them again.

Felicia and Gregory Heaton

To make the weekend more wonderful, we met up with our “New BFF’s” Sam and Don for breakfast on Sunday. Quick recap- we met Sam randomly when we were on our loaded bikes back in May, and we ended up staying with her and her boyfriend Don for a couple days. Turns out this biking event was taking place Sunday where they close streets and let families ride around. So we did.

Don, Max, Emily and Sam

All in all, in 2 days we reconnected with 12 people in Portland that we met because of Spoke Your Mind.

Sink Or Schwim

by Maxim in

A friend of ours, Eli Schwimmer, gave us a nice mention on his travelogue. So I thought I would return the shout out. Eli is cyclist who loves South Korea. We love him! Thanks Eli!

Sink or Schwim

River Soap

by Maxim in Bike Tour, California, interview, North Coast

We went to check our PO Box last night and in it we found a gift from our dear friend Harvey. Harvey was one of the voices on KGGV 95.1 “The Bridge” – We were in Jenner, CA at a wonderful cafe when we started talking to a lady about our project. She introduced us to David “The Rivermouth” Kenly. After hearing about our project he invited us to come on air the next day for an interview. We spent an hour on air and talked to callers. One caller had both parents struck with Alzheimer’s. It was a great experience.

Harvey told us that he was going to give us a gift of artisan soaps, perfect for traveling. That gift arrived yesterday. Thanks Harvey!

http://riversoap.com

www.kggvfm.org

David "The Rivermouth", Harvey and Max

Leg 1 wrap

by Emily in

We are so thankful for all of the support we received that made the first leg a huge success!

COYOD met: 17
Miles pedaled: 1,100
Hosts: 13 families
Lodging: 57 days total ( 33 with hosts, 14 camping, 10 motel)
Alliances:
Alzheimer’s Association- Western and Central Washington, Oregon and Northern California chapters
Jazzheimer’s
Lewy Body Dementia Association
Triangle Media Works (The Hope of Alzheimer’s)
Paul Williams Support Fund
Interviews filmed: 12 COYOD, 5 professional
Funds raised: $1,530
Press/exposure: King 5 News, KGGV The Bridge 95.1 FM, Western and Central Washington Alzheimer’s Association, Lewy Body Dementia Association
Events attended: HBO Series Screening, Food for Thought, Benefit show for Paul Williams

MA/NH Alzheimer’s Association Chapter

by Maxim in

We connected with Nicole McGurin, manager of the Early Stage Program at the Massachusetts/New Hampshire Alzheimer’s Association chapter when she commented on “The Music In Hugh” video after we posted it on Youtube. She showed it at a conference a few months back. We have been discussing plans for our visit to Boston and on August 6th, we are speaking at an event to benefit Children Of Young Onset Dementia. Thanks Nicole!

Also, on July 25th, the chapter is sponsoring an event called Memory Ride. You can learn more about Memory Ride at www.alz.org/manh. The ride was started by the Noonan family who has a strong family history of Young Onset Alzheimer’s Disease to raise money for Alzheimer’s research. The ride grew each year, and a few years ago the Alzheimer’s Association MA/NH Chapter started running it. Last year it raised $350,00!

Sometime later today we are going to featured on the chapter’s blog, Mind Matters, www.alzmass.org/blog.

Pitstop in Seattle for July

by Emily in

We planned the bike tour to be home for July due to some important happenings. Two of the three major ones just went down July 11:

Megan and Chris’s wedding in Doe Bay, San Juans

This is Megan Hirsh and Chris Henderson- two very important people in our lives. Megan is Max’s cousin- but more like his sister, and she’s the Mind Series’ Treasurer and VP. Chris is also a Mind Series key player, and we lived with these two for a few months before leaving for the first leg in May. We got to witness pieces of their planning come together beautifully.  There was an announcement at the beginning of the ceremony that honored all of the people who were not able to join, which included Hugh (Max’s dad). Traveling up to this rustic spot was not an option for Hugh, and again we are so lucky that he is living at Gaffney House.

And…

Tucker Dane Boardway was born!!

This is my brother Rob with his second nugget. Looks like he’s got boxing fists, watch out!

Hugh’s Notes

by Maxim in Hugh, Seattle

This morning I have been looking over some of my Father’s notes. The following is from a speech he and my mother gave at the 2007 Annual Alzheimer’s Association Regional Conference. It was just under a year after his first diagnosis. I remember sitting with him hours before the speech going over the sample questions provided. He scribbled some thoughts…