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Spoke Your Mind, created by Max Larkin and Emily Boardway, spotlights Children Of those with Young Onset Dementia (COYOD). Learn More

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Jun
3

A Tasteful Evening

by Maxim in

Hello Everyone,

Emily and I have a very exciting opportunity coming up this next Thursday, June 10th. We were asked by the Alzheimer’s Association to be the keynote speakers at a fundraising event called A Tasteful Evening. The gist of the event is that 15 local chefs donate their skills, food and serving staff for the night. These chefs each pair up with a winery to create a lavish feast for the attendees. There is an auction and so forth. It brings in big bucks for the Association and is an excellent opportunity for us to network.

Wish us luck on the speech!

Check out the link:

http://www.alzwa.org/cms/te/default.htm

Thanks and love to you all,

Max


Apr
28

Storyteller Winner for Neuro Film Fest

by Emily in

This is a very touching story told by a husband who recently lost his wife to Creutzfeldt-Jakob Disease (CJD), commonly misknown as “Mad Cow’s Disease”.


Feb
18

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.


Oct
26

Thanks

by Maxim in

We want to thank everyone who helped Spoke Your Mind be a success. With your help we have captured over 30 COYOD interviews and have met personally with over 70 COYOD during our travel though 10 different states.

We are humbled by the support we received on the road and the continual backing we have working on Spoke Your Mind from home.

Thank you to all and stay tuned for an update from Spoke Your Mind.


Sep
15

Back to Seattle

by Maxim in

Spoke Your Mind is moving on to its next phase.

As Emily and I pedaled  the 20 miles to Mt. Vernon from DC, we had a long discussion. We talked about Spoke Your Mind, its progress to date and where it is heading. After speaking for some time the realization came to us that it is best to head home. We are extremely happy with what Spoke Your Mind has accomplished to date and we are excited about where it is heading in the future.

Though our bicycle tour is stopped for now, our commitment to Spoke Your Mind and the Young Onset Alzheimer’s/Dementia movement will not end here. We are heading home to Seattle to place our feet, continue to build on the relationships we have developed during this project, and prepare for our next step forward to bring understand to this cruel disease and help to those who are feeling it’s effects.

The compassion we have felt and the help we have received during Spoke Your Mind exemplifies the goodness of the human spirit. We thank everyone who has crossed our path and helped bring Spoke Your Mind to fruition.

We will keep this blog moving forward so stay tuned to see where and how Spoke Your Mind continues.


Sep
3

NY to DC

by Maxim in Bike Tour, Boston to Austin, COYOD, D.C., New York

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Emily playing the Immigrant

DAY 1

Early morning Thursday the 27th we dusted off our cycles. The trailers and panniers took their usual position this time with the added weight of souvenirs from the NY Alzheimer’s Association Chapter (Books, Hats, T-shirts, Pins). The sun had yet to show itself as we peddled from the Upper East side to the WTC site where we were to catch the 6 am train bound for Newark, NJ. The city does not allow bicycles on any train during rush hour, which is pretty much all day. We found a small window of time between 6 and 6:30 am where bicycles were allowed. Knowing this was our only way out of Manhattan we left the apartment at 4:45 am to ensure we would not miss the train.  The city was mostly asleep except for the cabbies, cyclists and joggers getting in a workout before the work day and the bar patrons stumbling home after the 4 am last call.

We rode nearly the entire island along the Hudson. The city grew lighter as we pedaled closer to the station. We said farewell to the city of cities knowing that Spoke Your Mind’s time here was not over.

The train going to Newark at 6 in the morning was mainly empty. Pushing our cycles out onto the streets of Newark snapped us out of our New York love buzz and reality hit. We started cycling southwest towards D.C. through the unknown streets of New Jersey.

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Our tent after a thunderstorm...notice the puddle in the background

We pedaled hard to break out of the industrial sprawl of East Jersey, stopping only to fuel up at a Duncan Donuts. Relief brushed away the anxiety when industrial plants let way for farmland.We experienced some of the most beautiful scenery of the both Leg 1 and 2 during our ride through West Jersey. We ended our first day after 82 miles in a campsite on the Delaware river on the New Jersey/ Pennsylvania border. Our camp was set up in the dark because we set our lights away from the tent as decoys for the bugs. They were thick and hungry. We crawled into our bags exhausted and humidity blanketed us as we dosed off…for a few hours. The aforementioned humidity evolved into a thunderstorm that woke us in the middle of the night. Rain dumped and lightening flashed . I was certain that either the river would carry us away or the lightening would strike our tent. I managed to get some sleep but when we woke the heavens were still coming down. We packed up in the rain and started riding into Pennsylvania, the 6th state of our second leg.

On Day 2 from NY to DC we planned to ride 60 miles but our time was cut short by a few equipment failures. I had a flat early on and my cleat kept malfunctioning which set us back. We could no longer make it to the campsite we wanted and decided to head into Norristown to bunk up in a motel. We were stopped at the crossroads into town by a man walking his dog. He told us that if we went into Norristown, we might not leave with all our things. The only motel in the town is overrun with prostitutes, pimps, dealers and junkies. He opened up his home for us to stay the night and saved us from what I imagined a town full of characters from Mad Max. This hospitality set the tone for the following days.

On Day 3 we continued west into Pennsylvania and were told that soon we were entering “Amish Country”. The landscape was that of rolling, unseasonably green hills from the excessive rain. Elegant farms were strewn through the country side. The pace of life slowed. A vintage feeling filled the air. As the day wound down we found ourselves at a four way stop searching for either a campsite or motel. I had my map wide open facing the opposite way from that of Em. A few children on bikes rode passed us. The girls wore country dresses with bonnets and the boys had slacks, tucked in plaid shirts, suspenders and fedoras. A man and woman in a car drove up to us asking if we needed help. As we were chatting a horse and buggy roared by us. More children on bicycles pedaled by. It turns out the lady in the car’s mother died of Young Onset Alzheimer’s. Her and her husband offered to take us in for the night. Everything happened so fast that I did not have time to process sights in the background during our conversation. It was clear though that we were in the middle of “Amish Country”.

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Shawna, Us, Barbara and Bob

We pedaled to their house and met Bob outside who welcomed us into the garage to store our bikes. Bob and Barbara offered us their shower, fed us, gave us a bed and history lessons of the Amish, Mennonites and Bruce Springsteen. We met Barbara’s daughter Shawna who jammed on my guitar and showed her dance moves. In the morning we interviewed both of them about their experience with Young Onset Alzheimer’s. They sent us off with full bellies and supplies. It was a magical connection that started at a four way stop in “Amish Country”.

We continued Day 4 pedaling through the Pennsylvania Dutch country side. We got a late start because of our morning interview. Knowing we would not make it to the campsite on our bicycle map we pedaled on unsure of where we were going to rest for the night. Later in the afternoon we came across a family playing volleyball in their yard. We asked if they knew of any campsites in the area. The gentleman named Joe said, “We’ve got a yard right here.”

Tent with the milk calves in the background

Tent with the milk calves in the background

He showed us the proper place to put up a tent. He was dressed in his church outfit and his wife and daughters were in there dresses, wearing their bonnets. Joe owns a dairy farm and we pitched our tent next to his pasture of milk calves. They each had their own “calfhouse”. Joe and his family is from a lineage of Mennonites. He welcomed us into his home, fed us hot dogs and educated us on his religion. They are allowed electricity, cars, microwaves and phones. They are not allowed radio, TV, Internet and only can listen to music that is a capella. Their church bans musical instruments. When Joe showed us our campsite I offered to play my guitar not knowing that it is a sin in their religion. Whoops.

After chatting about our project they explained to us that  Joe’s wife, Brenda’s, mother has Alzheimer’s. She is in her seventies. Alzheimer’s affects all walks of life.

In the morning Joe woke us at 6:30 to show us his dairy operation. He has around 50 cows that pump out three hundred gallons of milk a day. The entire family and us ate breakfast and we tried some of his raw milk. It was thick and delicious. They wished us luck and we were on the road a little after 8.

Where's Emily?

Where's Emily?

Joe showing explaining how to milk a cow

Joe showing explaining how to milk a cow

We rode hard and fast to Ellicott City, a suburb of Baltimore. We were once again staring at our maps when a woman, Kelly, offered us her backyard. Her husband John is training for a triathlon. He was gone on a ride when we set up camp but we met over a big plate of spaghetti and a beer. A neighbor of theirs who we met is Nursing Home Negligence Attorney and her husband is Geriatric Doctor. We exchanged info and passed on our website to them.

We slept well during our last night before D.C. I always love the opportunity to play with a dog and they had a beagle named Lucky who I befriended quickly.img_0408

Yesterday we woke and finished our ride to D.C. We are currently staying with our high school friend Katie Schiller in Arlington.


Sep
1

Pigs

by Emily in

SORRY FOR ALL CAPS, FIRST BLOG ENTRY VIA PHONE. I AM NOT SHOUTING!

WE LEFT NYC THURSDAY AT 5AM AND SINCE THEN HAVE RUN INTO SOME GOOD LUCK. WE HAVE A NEW FUNDRAISING TECHNIQUE WITH PIGGY BANKS ON THE FRONT OF OUR BIKES THAT READS: DONATIONS FOR YOUNG ONSET DEMENTIA. SO FAR THE PIGS HAVE DONE THE FOLLOWING:

-RAISED $153

-ATTRACTED A COYOD WHO HOSTED AND FED US, AND WE INTERVIEWED HER AND HER FANTASTIC FAMILY

WE ALSO CAMPED AT A MENONITE FAMILY’S DAIRY FARM.

THANKS PIGS!

THIS FONT KEEPS GETTING BIGGER.

ALMOST TO DC.

MORE TO COME…pig



Aug
15

Manhattan

by Maxim in

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Em and Max (entering Long Island)

Peter and Steve

Aysha, Steve, Max and Peter

We awoke yesterday with Manhattan in our sites. We imagined the sounds of horns, yells and all the expected New York City responses to three West Coasters riding into the city. I will admit I was a bit nervous. We rode for 5 miles and two angels crossed our paths. Steve and Peter, two locals, were riding the same path. They could tell we were new to riding in New York and took us under their wings by escorting us into Queens.

Peter routed us to Queens Blvd. He said it was the most direct route, though he prefaced it by saying it is one of the most dangerous streets in America. Surprisingly it was strangely easy and a very enjoyable ride. We rode over the 59th St. bridge, which brought us to within ten blocks. Emily’s face was priceless viewing the skyline for the first time. What a way to see Manhattan for the first time, via Bicycle.

We rode nearly 50 miles, 35 of it in New York City. We had dinner and were exhausted. For “the city that never sleeps,” we were in bed by nine…


Aug
10

Boston to Cape Cod

by Emily in

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We are very fortunate to have Aysha Ghazoul join us from Boston to New York. I mentioned in previous blog posts, but here’s a quick recap: we met Aysha in Portland during Leg 1 and she wanted to join us because she has a loved one with Young Onset Dementia, is a filmmaker, and loves biking. Aysha writes email updates to her friends and family every few days, which are explicit and offer great insight to our days. So I’m going to post them as they come, along with photos.

(August 9, 2009)

Dear Family and Friends,

Our first day on the road (Friday) was fantastic.  We managed to cover 70 miles…the longest that Max and Emily had ever done in a day.  The road that we were on was a bike route that had designated signs along the way which was extremely helpful.  We stopped for breaks, photos and ice cream of course, and by around 6pm we finally rolled into Plymouth.  The town was beautiful but “the rock” was hilarious.  I expected some beautiful dramatic rocky bank on which the pilgrims stepped foot on when first arriving and instead it was literally a rock about 8 feet wide by 15 feet long surrounded by a metal railing.  It has to be one of the strangest tourist sights I have ever seen.  It was so beautiful next to the water that we were in no rush to head off to the camp site…something that we regretted fairly quickly.  By the time we got to the entrance of Myles Standish State Forest the sun had almost set.  The first part of the road was all paved which was wonderful but the moment it became pitch black, the road switched to a rougher surface.  With small bike lights on our handlebars the only other light source was from the moon which on that night was minimal to say the least.  We cycled for 5 miles being pelted by hundreds of insects large and small hitting what seemed like every pot hole along the way hoping to see some sign of civilation.  When we finally made it to the camp site we were greeted by families sitting around their fires, drinking, eating, and listening to very loud dance music.  It was all quite surreal but a huge relief at the same time.  We snacked on a sandwich, made our tent…ok Max and Emily made the tent, and all squeezed in for a surprisingly peaceful night.

Aysha crossing the bridge into Cape Cod

Aysha crossing the bridge into Cape Cod

The morning was not so peaceful because we were woken up at 7am by yet more loud dance music.  None the less we had a pleasant morning, packed up and headed back on the road to Cape Cod.  That evening we stayed with the Noonan Family who are struck with the genetic form of young onset alzheimers.  Out of ten siblings two had the gene and have passed away and another who is 56 is currently living with it and is staying in a care facility.  Of course other siblings as well as the children of those siblings may also have the gene but they have chosen not to find out.  There is a 50% chance that if you have this gene it can be passed onto your children which of course for some creates the difficult dilemma of whether to find out or not.

They provided us with a lovely dinner from a local Cambodian restaurant and we were joined by three of Patty’s teenage grandchilden.  Patty’s husband also took us to the cape where we swam in gorgeous 70 degree water.  While floating far out he decided to let us know that this is where they had filmed the movie “jaws”…some people have a strange sense of humor.

Max, Em and Aysha on the "Jaws" beach in Cape Cod

Max, Em and Aysha on the "Jaws" beach in Cape Cod

After Max and Emily did an extensive interview with Patty this morning we are now about to head off towards Providence.  We are not cycling very far today because there are limited places to stay and the one site we had picked 45 miles away doesn’t allow tents, only RVs.  Turns out that some camp sites out here require a membership fee of $475 a year…I mean seriously it’s just camping.  So tomorrow will be another long and fun day on the bikes.  I wish I could write more but we need to leave and I apologise about the bad grammer.  I am not a very good writer when rushed and I seem to be using a keyboard that likes to drop letters every so often.

Lots of love, Aysha


Aug
6

Boston Event

by Maxim in Bike Tour, Boston to Austin, COYOD

At the MA/NH Alzheimer's Association office

At the MA/NH Alzheimer's Association office

Back in April, we posted the Spoketube video “The Music in Hugh” on Youtube. A comment from a lady wrote “Would you mind if I showed this video at a conference in May.” After commenting back and forth to one another, we exchanged information and got in touch. The lady happened to be Nicole McGurin, who works for the Massachusetts/New Hampshire Alzheimer’s Association Chapter. Over the next few months we threw back and forth ideas about a possible event in Boston when we visit. That event was tonight.

The folks at the MA/NH Alzheimer’s Chapter decided to throw an event dedicated to COYOD (Children Of those with Young Onset Dementia). They invited a doctor from the area to speak about the genetic factors and risks of Young Onset Dementia. They also asked us if we would like to speak. A flier was created and they invited as many COYOD as they could get in touch with in the area. The RSVP list grew to 40. RSVP lists historically are misleading, but tonight history did not repeat itself. It seemed that minus no more than 4 or 5 people all who talked also walked. A local restaurant donated their conference room and it was packed. I never dreamed that I would see a room full of so many COYOD in one place at the one time.

The doctor, Dr. Forester spoke for 20 minutes about genetics and people curiously asked question at the end. We were then invited up to speak. I told our story, talked about Music and showed “The Music in Hugh.” People were very touched by the images of my Dad’s passion for music. Emily spoke eloquently about the mission of Spoke Your Mind, our struggles with Young Onset Dementia and the power of storytelling.

The energy of the room evolved throughout the night from anxious to hopefulness. People became acquainted with another and exchanged information.It was magical to see this many COYOD together is one space.

The Alzheimer’s Association is planning to use the information they collected to ask what type of services would COYOD like to see available (support groups, monthly seminars, etc.).

What a way to kick off the second leg!


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