Spoke Your Mind

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.

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.

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.

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

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…

Sponsor Our Legs

by Emily in Boston to Austin, Sponsor Our Legs

As we gear up for Boston to Austin, we are pushing a new fundraising opportunity called “Sponsor Our Legs”. Max and I whipped up a fun video to explain this concept. Pasted below the video is the email we’ve sent out to our network, which is more explicit and addresses our urgent needs.

Dear friends of Spoke Your Mind,

We would like to take this opportunity to thank everyone who has supported Spoke Your Mind and helped to make it a reality. We returned on July 1 as scheduled from our first section of the bicycle tour, Seattle to San Francisco, and it was more successful than we imagined.

As you know, we aimed to connect and support COYOD (Children Of those with Young Onset Dementia) in three ways: on film, by personally linking individuals, and via our online community. Thanks to others willing to share their experiences, we were able to capture 12 COYOD stories in detail on film, as well as 5 interviews with professionals in the field. We’ve produced 4 documentary shorts of these stories which can be seen on Spoke Tube, and with which we’ll ultimately compile our end-product documentary. Because those we’ve met thus far found a need for resources and community, our online network for COYOD is nearing 50 registered individuals; family members of those with young onset are actively using it as a space to ask questions, share stories and exchange information. Needless to say, we are excited about Spoke Your Mind’s initial success and extend our gratitude to you for making it possible.

We receive emails weekly from those diagnosed with Young Onset Dementia or their family members. Though the notes come from all across the country, we see common themes of frustration with a lack of available resources and thankfulness for knowing that they are not the only ones struggling with this illness. As an example, a Texas woman recently wrote us:

“I was seriously having a terrible caregiver day with my dad who was diagnosed at age 59 in September of 2006 with Lewy Body Dementia and ran across this site. I am a 36 year old wife and mother of a 14 and 6 year old. If you are interested in hearing my story, I would love to tell it. As well as to read others, I think it would help so much. The day I listened to my dad plead and cry on the phone, begging me for his car keys, is the day that I grew up. Maybe our experiences can help someone, because on all of the forums, all you hear about are 70-somethings and their spouses. Even if I don’t hear from you, good luck and God Bless.”

Though we’d like to share all of those stories, we’ve anonymously excerpted a few at the end of this letter so we can share with you a more developed sense of COYOD needs.

Although Spoke Your Mind’s first leg generated many stories and continues to link COYOD, this was only possible because we met our fund raising goal. There are thousands out there who are caregiving for those with young onset and suffering in silence and isolation. As we begin our second section of the bicycle tour, Boston to Austin, we begin energized with the ambitious goal of reaching these people. Already, we are slated to speak at an Alzheimer’s event in Boston, have COYOD who’ve offered us interviews along the way, and have supporters scheduled to greet us in Austin.

Unfortunately, though, we only have enough funds to provide for the very first section the east coast tour, Boston to New York. We have skinnied our budget wherever possible to hit $3.20 per mile in overall expenses (documentary supplies & maintenance, food, emergency insurance, etc.), but we sincerely ask for your help in funding the remaining 6 legs of the tour and firmly believe that every $3.20 is valuable. Donations can be made here: http://www.mindseries.org/donate/

As an alternative to individual mileage contributions at $3.20 per mile, please consider participating with friends or as a team to Sponsor Our Legs. Sponsor Our Legs is a new effort that prices out each leg along the Boston to Austin route according to its mileage. Please contact us ASAP if you are willing to captain a group (your company, friends, cousins, family, etc.) to make our skinny legs possible. For instance, a group of 20 friends contributing $48 each would cover NYC to DC. Together, we can leave no leg uncovered on our way to Austin in support of COYOD!

As if that isn’t enough, we also ask that you consider spreading the word about Spoke Your Mind to others with whom we would not be able to connect if it were not for you. Thank you for all of your support.

Respectfully,
Max and Emily

Pitstop in Seattle for July

by Emily in

We planned the bike tour to be home for July due to some important happenings. Two of the three major ones just went down July 11:

Megan and Chris’s wedding in Doe Bay, San Juans

This is Megan Hirsh and Chris Henderson- two very important people in our lives. Megan is Max’s cousin- but more like his sister, and she’s the Mind Series’ Treasurer and VP. Chris is also a Mind Series key player, and we lived with these two for a few months before leaving for the first leg in May. We got to witness pieces of their planning come together beautifully.  There was an announcement at the beginning of the ceremony that honored all of the people who were not able to join, which included Hugh (Max’s dad). Traveling up to this rustic spot was not an option for Hugh, and again we are so lucky that he is living at Gaffney House.

And…

Tucker Dane Boardway was born!!

This is my brother Rob with his second nugget. Looks like he’s got boxing fists, watch out!

San Francisco COYOD

by Maxim in COYOD, San Francisco

Yesterday the 23rd we met with four COYOD at a pub called the Little Shamrock in the Sunset District. The group was wonderful. We told them briefly of our project and it naturally flowed into a conversation about life with parents affected by Young Onset Dementia. We shared tough struggles as well as comedic anecdotes. All four women has a mother with Young Onset Dementia. So needless to say my father and I were the odd ducks. We exchanged info and planned to film their stories later in the week. It was a huge success!

We Made It

by Maxim in San Francisco

Elle (guest biker), Emily and Max