September 2009

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.

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.

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.

NY to DC

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

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.

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”.

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

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?

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.

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

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…