August 2009

Some NYC highlights

by Emily in

(Not in order of importance.)

#1. Walking around the city

Times Square

#2. Meeting local COYOD

Max, Michael and Em

We met Michael Tuesday night and learned about his story. Michael’s dad was diagnosed with Frontotemporal Dementia (FTD) in February. We spent the evening sharing COYOD stories, capturing it on film, and eating Indian food. We were lucky we were eating during the crazy thunder storm that blasted through the area we were in and took out 100 trees in Central Park.

#3. The Metropolitan Museum of Art (the “Met”)

Looking at the Roxy Paine installation at the Met museum.

On Wednesday we interviewed Deborah Gaffe, a museum educator who helps run a program specifically for people with dementia and their caregivers called “Met Escapes”. After the interview we walked around the gorgeous galleries for hours.

#4. Being an NYC Alzheimer’s Association groupie

Paulette Michaud, Max, Em, Jason, Karen and Lynn

Someone joked that they’ll need to add a desk for us soon. We spent most of Thursday at the office. Paulette Michaud, the director of early stage programs, scheduled us an interview with a woman diagnosed with Young Onset Alzheimer’s named Karen (pictured above). Karen is a huge advocate for people with Alzheimer’s, and speaks to various audiences with Paulette. They call themselves the “Paulette and Karen” show. After we joined Paulette and Karen in a “Memory Works” class for people in the early stage of Alzheimer’s. Paulette leads the class with different memory and brain activities. It was a riot. The humor and camaraderie among the group is contagious. Even though we were only observing, the exercises were tough even for Max and I. As Karen mentioned in the interview, she looks forward to this weekly class because it allows her to feel “normal”.

After a quick lunch we popped into a training for non-family caregivers led by Nancy Hendley. Max and I told the group about the project, and it wasn’t until midway through the conversation that someone stopped us to clarify that we were on our bicycles. This was incomprehensible, and the reaction was priceless. After lots of laughter we got to learn a technique that’s called “hand-in-hand”. It’s difficult to explain in words, but will share it soon on film.

#5. Attending a discussion about the HBO Alzheimer’s Project with Producer John Hoffman

Em, John Hoffman, Max

Our finale to Thursday was going to the public library’s auditorium for a Q&A with HBO producer John Hoffman and Alzheimer’s Association’s Matt Kudish. We briefly met John, who learned about our project from Matt Kudish. John’s own father had Alzheimer’s, and he expressed that at first he was initially hesitant to do this project because of his fears of facing such a depressing disease. But as he was working with the NIH (National Institute of Health) on another HBO documentary, the scientists there pushed for an Alzheimer’s special because so there’s so much advancing in the area. So ultimately John could no longer run away from Alzheimer’s and dove straight in with the HBO series. He explained that the process of producing the project and learning about the “momentum in science” offered him hope. We thanked both John and Matt for their incredible work.

NYC Chapter

by Emily in

We were forewarned by other chapters that the NYC Alzheimer’s Association office is a “Mover and Shaker”. Yesterday Max and I were greeted by the staff and spent nearly all day learning about their fantastic programs. In one day alone, we had an hour-long discussion with the staff about Spoke Your Mind, interviewed a woman who has Young Onset, and attended a support group for spouses of Young Onset Dementia. We were sent off after an amazing day with a packed schedule this week full of opportunities for Spoke Your Mind, and two books on dementia: “Still Alice” and “Partial View”.  No doubt they moved and shook us. We are so thankful!

Manhattan

by Maxim in

Em and Max (entering Long Island)

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…

Boston to Cape Cod

by Emily in

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

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

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

Boston Event

by Maxim in Bike Tour, Boston to Austin, COYOD

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!

Meeting Dr. Graboys

by Emily in Dr. Graboys

Yesterday Max and I were honored by the opportunity to interview Dr. Thomas Graboys, professor of medicine at Harvard Medical School and author of Life in the Balance. In his book, Dr. Graboys depicts an honest portrayal of what it is like living with Parkinson’s disease and it’s related Lewy Body dementia. We first learned of Dr. Graboys back in May through Max’s sister-in-law, Kate Jackson, who sent us a link to his website suggesting we set something up for our Boston visit. I received an immediate reply by Dr. Graboys, and began communicating with his assistant Nicole to coordinate an appointment in August. Hoping everything would work out, we anticipated this event while we repeatedly heard fantastic things about Dr. Graboys and his book from multiple people.

Admittingly, Max and I haven’t read Life in the Balance yet. And leading up to yesterday we searched around the many bookstores in Boston to no avail, later discovering the book is only available in some independent store and online. So I read excerpts online, and had a fairly good understanding of his life situation. But meeting him in person was extraordinary.

Max and I strolled up to his beautiful home in Chesnut Hill all sweaty from the humidity carrying our camera equipment. We rang the doorbell and his assistant Nicole answered. She took us in and we visited for a bit while Dr. Graboys was getting ready. We waited in his office that harbored shelves packed with various books and photos of his beautiful family. Then the Dr. came in and instantly began articulating a multitude of things, including his wife getting her wishes for a kitchen remodel and gratitude for us coming over. We moved to the sunroom and casually interviewed for about an hour.

What struck me was despite our motives for capturing Dr. Graboys story, he was genuinely interested in our own just as much and asked us an equal amount of questions. In particular, having watched “The Music in Hugh”, Graboys asked how Max’s mom was doing. He then shared how he is curious- and a bit concerned- how is own wife, Vicky, will respond when he’s reached a point where he can no longer communicate. It was an intense, refreshingly raw conversation. When we wrapped up the interview, he left the room and came back with a copy of his book for us. Graboys opened the cover and read the note he wrote for us, explaining that his handwriting is difficult to read due to his Parkinson’s symtoms. It read:

Emily and Max,

Many thanks for undertaking this very important project. -Tom

Tom then showed us his drum set and played a little bit for us. The entire experience was priceless, and the footage will undoubtedly be inspiring for viewers. Thank you Dr. Graboys and Nicole!

Walking Boston – Max’s Version

by Maxim in

It’s odd to get onto a vehicle in Seattle, take about an hour and a half nap, and wake up a few minutes outside of San Francisco. It’s a hard fact to admit but its true, an hour of flying equals a month of cycling.

San Francisco is where we connected to our flight to Boston. We arrived on the East Coast the night of August 1st and loaded all our belongings (refer the August 2nd blog post for photo) into a van cab. The air here really is swimmable and we “ain’t felt nothin’ yet.”

Caitlin, my cousin, is subletting a room in Back Bay, a neighborhood west of downtown. Her apartment is on the sixth floor. The elevator holds about one and a half persons and moving at just under a floor every ten seconds, it took a while to hoist all our items to the top floor. We met the roommates and welcoming they were to us complete strangers. We were introduced to “Butters the feline”. His name is very fitting due to his excess weight. After a brief chat we all retired to our separate quarters. Emily and I, still used to Pacific Time, managed to fall asleep near four a.m.

We awoke on Sunday afternoon at 1. A feat caused by a mixture of exhaustion, the rotation of the Earth and laziness. We took a walk through the local “pahk” keeping our ears perked for the accent. The roomies were having a Sunday BBQ to celebrate an engagement of a friend and we met some locals. It was a great crew and we chatted over turkey burgers and miller light.

Monday, we spent the morning emailing and planning more of our trip. I am very excited about our route change. It is quite major, but it will better our mission. We are continuing as planned to D.C. but instead of heading west, we are maintaining our course south. We are sticking to the East Coast until Northern Florida where we will turn west for Austin. It shortens the length of the tour by nearly seven hundred miles, which means we will be home for Thanksgiving. I put our bikes back together and they seemed to suffer nearly no damage during the flight. We will know for sure during our maiden voyage to Cape Cod.

In the afternoon, we decided to walk across the city. We strolled through the Public Garden into the Boston Common, a “pahk” dating back to the 1630s. The latter is where our feet stepped upon “The Freedom Trail”. This trail, made up of two rows of bricks and red paint, leads patriotic tourists to all the points of interest that highlight our nations revolt against the tyranny of Great Britain. There is tons of great information, historic sites and nostalgic fantasies that bedazzle the mind, but we chose to step upon “The Freedom Trail” because, staying true to its name, it was free.

Me in front the Massachusetts State House on "The Freedom Trail".

We finished the walk through the North End, which is traditionally an Italian-American neighborhood. I bedazzled my own mind with the romanticized life of Mobsters. The air was still warm and moist as the night took its course. Boston accents thickened by olive oil echoed through the streets. Sweet Virginia tobacco filled the air. Old Brick walls radiated heat from the vanished sun. A city nearly four hundred years old is still very alive today.

On our way home we were pulled into a pub by a comedian who offered us a beer if we would watch his show. To continue with the theme of freedom we agreed to a free beer and watched his act. His name was Tom Dustin. He had some good lines and put on a show. After his bit we talked with him and another comedian about our project. They were both very engaged and Tom proclaimed his biggest fear was to get Alzheimer’s. They were great guys. Thanks for the laughs.

Tuesday, we woke up much earlier than the previous day and had a wonderful breakfast at a local Café. We hurried back to the apartment to coordinate and plan. I spent time honing our route, connecting with the Alzheimer’s Association in NYC, who is very active within the local community, and organizing. We waited for my cousin to stop by to grab some of her things. She is being so kind by letting us stay here until we leave. After we went our separate ways, Em and I walked across the Charles River to MIT’s campus. It is extremely grandiose. Carved high above columns 20 feet in diameter were the names Newton and Kepler. I found out MIT students still act like other college students. They juggle in the courtyard, break dance in the hallways and carry left over pizza from the last night’s mixer to their friends dorm room to watch a movie. Instead of a drawing of genitals on top of the pizza box though, you may see F = (x^2 + y’^2)^1/2.

Walking Boston- Emily’s version

by Emily in

Max and I always strive for what we call “sovereignty” in our relationship. After being together for over 8 years, and now working together on this project that tests our breathing room, we declare our sovereignty when we need it. This blog will begin to be a place for that. We decided sometimes it’s too much “we”, and want to start writing from an “I” perspective. So, here’s the first attempt at both of us independently contributing to this blog- sort of a “he said she said”- but we won’t call it that. We actually can’t agree on what to call our sovereign blog entries. Not that it matters. Maybe by the time we’re done writing these, we’ll agree on something.

Anyway, it’s been nice getting to see Boston the past few days on foot. Our first night was pretty uneventful- which was amazing considering our lack of planning on getting our load from the airport to Max’s cousin Caitlin’s apartment in Back Bay. We met her roommates Chona and Trish, and they were friendly and welcoming. On Sunday we slept until 1pm, woke up and walked straight to Duncan Donuts. I’ve heard from many o’ east-coasters that the “Dunks” has amazing coffee, so I had to see for myself. It was good- tasted more like iced tea than coffee- with loads of cream and sugar. But is was CHEAP- which is the key word.

Not that I want to compromise my health with junk food now we’re on a budget. But dabbling is no biggie. After our greasy brunch we meandered to the public gardens. We overheard a southie Boston accent, and stayed close by to get a good listen. It was a lazy Sunday and we felt ok taking a little break after all the sweat of getting to Boston. Later we bbq’d on the rooftop with the roomies and their dynamic group of friends.

The next day we assembled our bikes and worked on Spoke Your Mind stuff until about 5. Then headed out to the “Freedom Trail”- a walk that takes you around some historical sites that Chona recommended we do. We took our time along the path to refresh our minds on American history. So much went down in Boston, and the buildings reflect the times. We stayed longest at the King’s Chapel cemetery, with headstones for pioneers of all ages- many who were victims of the small pox. I was intrigued by Elizabeth Paine’s headstone- which is rumored to be the influence for the “Scarlett Letter” because of an abnormal “A” engraved on headstone that may have represented adultery.

The Freedom Trail

On our way back through the North End, we stopped outside a bar where we could overhear a stand-up comedian. A guy standing next to us asked if we’d like to come in to watch his own act that was on next, beer on him. Free beer and laughs? We went in. The show was short, and we thanked our new funny guy Tommy and began telling him about our project. Tommy replied with, “my dad told me smoking cigarettes helps prevent Alzheimer’s… because you’ll die of lung cancer before you’ll get it!” After his joke, Tommy, along with another comedian, were all ears and began asking all sorts of questions about Spoke Your Mind. They both expressed that Alzheimer’s is the scariest thing they can imagine happening to them- or anyone they know. After our beer we thanked Tommy again and headed back to the apartment. My feet were sore, but it was worth it.

Tommy and me

Today we did some more work emailing with different Alzheimer’s Association chapters and getting ready for upcoming events. Then Max’s cousin Caitlin flew in from Seattle, and we hung out with her for a bit. Then Max and I walked around MIT (Massachusetts Institute of Technology) . Couldn’t find Noam Chomsky. But we did see a Jewish juggling group in the foyer, then a breakdancing group in another corridor. So much going on. This place just makes you feel studious. Higher education is around every corner. Almost makes me want to go back to school and sit in old brick buildings and discuss current affairs and philosophy and learn, learn, learn. But I guess we’re doing some of that on the road.

Now we’re preparing to interview Dr. Thomas Graboys tomorrow, author of Life In the Balance. I am honored with this opportunity to meet and capture this man, who is a brave advocate living with Parkinson’s related dementia. I recommend reading this to get a sense of his everyday courage.

I’m also looking forward to the arrival of Aysha Ghazoul, the woman we met in Portland during Leg 1 who made a documentary. Aysha is joining us from Boston to NYC to ride, participate and help film.

So things seem to be picking up with the project. And a personal perk is getting to see parts of the country I’ve never been to before. NYC is going to be wild. I have no idea how we’re going to actually bike through that madness…

Last few days at home and now… Boston!

by Emily in

July in Seattle flew by with celebration after celebration. We celebrated two weddings, some birthdays, a newborn baby and positive news on Max’s aunt who’s battling cancer. It was a joyful visit packed with love.

This last Thursday Max and I stopped by the local Alzheimer’s Association office to visit the brilliant and compassionate faces who have offered so much support for Spoke Your Mind. Here’s a pic below:

(Back row) Patricia Hunter, Keri Pollock, Max; (Front) Emily, Elise Ricci, Nancy Dapper, Linda Whiteside

We had all day Friday to pack our stuff to get ready for our flight the next morning. Max boxed the bikes and bob trailers while I uploaded footage and backed it up on the hard drive. It takes real time to upload, and we needed to free up space on the computer for this leg. That’s all boring stuff- but what’s exciting is how Max managed to carry all our stuff to the van cab in Boston. What a man!!

Now we’re getting ready to interview Dr. Graboys on Wednesday and speak at an event held by the MA/NH Alzheimer’s Association chapter on Thursday. Although we had anxiety before leaving this time considering our lack of funds for leg 2, it feels good to be in Boston and we’ve already met some wonderful people. Keep the good vibes coming…