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…

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.

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.

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!

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!

Speaking of connections- Rock Against Alzheimer’s crew is fabulous and we’re stoked we got to hang with them. Then there’s all the COYOD and people we’ve interviewed! We shot 4 stories, and yesterday interviewed specialists at the OHSU Alzheimer’s Center. While we were there, some guy approached us to ask about our bikes. Turns out he’s a COYOD. WTF? We’re going to hopefully connect with him today. We met a documentary filmmaker through a COYOD, and now she’s possibly down to join us for part of the trip…

Max and I are so grateful for all the people who let us bring our big loads into their homes. Our hosts deserve a very big shout out for enhancing our stay far beyond any expectations. Amy Dials- you brought us to pizza and the coolest McMenamin’s Kennedy elementary-school turned multi-pub and movie theater spot; Monica and Jeremy Sarant- thanks for connecting us with your friend at OHSU and taking us on a “little” joy ride of 40 miles; The Klitz’s- thank you for picking us up and making us instantly feel part of your amazing clan (see below for pic, Steve not pictured); The Dyer-Seeley’s- Kate, Gordy and Luke (and Dot and Sophie)- we love you!! As promised to Luke we will stop by 5-15 more times; Cassie and Omar- Stella, Petite Provencale and fun!; and our newest Portland friends Sam and Don- so happy we met Sam on the street, now we are in your home and we really dig you two.

We will miss Portland, but are getting excited for San Fran. And camping. A little time to digest it all and edit footage…

Max, Cyndi, Ryan and Sofi KlitzC

The feature was “The Memory Loss Tapes”, which Em and I had seen the previous night. Delighted not to have to go through the tough experience of watching this documentary two nights in a row, when Jake arrived we joined him in the bar to chat. We exchanged stories and he told his well. We were the first COYOD he had met and his mother was diagnosed many years ago. We talked through the end of the showing and went back in the room to finish up.

Cindy and Steve Klitz, who we planned to stay with for two days, came to the showing and afterwards took us to their humble abode. We will share the joys of that stay shortly…