Boston

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

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- 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…