As I mentioned last week, it’s crunch time for our local Walk to End Alzheimer’s, so that’s what I’m all about until October 5th. The nitty gritty involves getting people to sign up or to support a team or individual, and urging local businesses and teams to “Go Purple” however they can to show their support for the cause. (Why purple? Here’s a quick explanation.) Back in May, in Community Matters, we talked about all the bonuses of leaning into the cause, and the Walk is when all those bennies come together.
WAYYYY OUTSIDE MY WHEELHOUSE
Asking for help is not a real strength of mine, and I know many people share that feeling. Cold calling businesses, or walking inside to introduce myself and the cause, then asking if they will support it, and me, ranks right up there with asking for money—something that also goes with the territory as the walk approaches. That said, it gets a little easier every time, and it all starts with being comfortable talking about Alzheimer’s. Speaking freely and fluently about this beast of a disease seems easy to me now, but wasn’t always that way.
THE GLOBAL PICTURE
As part of the pre-event push this year, I attended a screening of the documentary Key’s Bags, Names, Words: Hope in aging and dementia. It is a look at how people with Alzheimer’s and dementia and their caregivers, across the world, are using the arts and community to find purpose and connection. The beginning of the film, where they were setting the stage, was a little light on the hope part; but, it came around strong as we got to know the individuals and their stories.
Among the people featured in the film is Helen Rochford-Brennan, who was diagnosed with early onset dementia at age 57. After spending a year holed up in despair she emerged and for more than a decade has been a global advocate and ambassador for the disease. Her work involves extensive travel, which itself provides an interesting lens. Rochford-Brennan regularly asks for assistance to navigate in the airports and get to her gate. Every time, the agents assume that “assistance” means a wheelchair, and they are surprised to see she can walk perfectly well. Nonetheless, she needs assistance—in the form of a person, helping keep her on track and get to where she’s going, on time.
That was a revelation to me, on many levels: a reminder that mental health/brain health challenges are no less real than physical ones, even if they are impossible to see; and a reminder of how much independence we can gain by clearly and specifically communicating our needs in a situation, to people with the capacity to understand and address them.
It was also a commentary on how far we have come—a celebration of our progress with understanding the disease and advocating for it, while acknowledging the work we still have to do.
THE CONVERSATION STARTER
I think about the more open atmosphere around Alzheimer’s and dementia every year when new people join our walk committee. At their first meeting, they often have a deer-in-the-headlights look. It may be the first time they have talked openly about the disease with anyone other than close family and friends. As people around the table briefly describe their own experiences, and why/how they got involved, you can see the bewilderment of the newcomers melt away into relief.
I wonder how much of a difference this type of involvement would have made for my family and me. I suspect we would not have had the band-width to consider giving more of our time and energy to anything beyond our immediate survival. Knowing and engaging with other people in our situation, however, would have helped, would have bridged the invisible isolation gap. You don’t wear the disease on your sleeve. For me, connecting socially with people about Alzheimer’s happened literally in the shadows. My first meaningful interaction was with a friend, on a nighttime walk in the woods at a holiday party, when we happened to discover we were on similar journeys with our mothers, both of whom lived far away from us and were in an advanced stage of Alzheimer’s.
Five years after both of our mom’s passed away, we found ourselves at the screening, chatting in a well-lit room, around others who were also talking about the disease. She’s studying to be a health coach and help people that way, while I’m using my platform to bring information and a different perspective to the Alzheimer’s journey.
WHERE CANCER WAS 25 YEARS AGO
Howard Goodrow, Executive Director of the Alzheimer’s Association of Vermont was also at the screening and offered an interesting perspective of why it’s easier to talk about Alzheimer’s now. Goodrow started working at the American Cancer Society in 1999, at an inflection point in how society viewed the disease. “People were just starting to feel more comfortable talking about cancer and coming out to identify as a ‘survivor.’ At that time treatments were starting to show more promise and people were living longer,” explains Goodrow. As is now happening with Alzheimer’s, people were making the connection between day-to-day lifestyle choices and behaviors that impact your chances of getting cancer. That knowledge and shifting attitude led to an open movement to fight this disease. “Opening up and educating the public about cancer led to decreased stigma around the disease, and increased both agency and community support.”
Goodrow sees Alzheimer's disease and the Alzheimer's Association as being uniquely positioned to make that same shift, to make strides in the short term that will greatly impact those touched by this disease. Rather than being seen as an unavoidable fate Alzheimer’s is being viewed as an opponent, to be grappled and negotiated with, and even, someday, overcome.
A MESSAGE FOR ALL AGES
When you look at pictures from the Alzheimer’s walks across the country, you notice that it’s not a bunch of old people. That’s another perception shift I’ve seen. People of all ages are profoundly affected by the disease, including kids who see what it does to their grandparents, relatives, friends and neighbors. I’m floored and super psyched to see college teams and fraternities saying “hell yes!” (true story!) to getting their purple on for the cause.
Make no mistake, my involvement is extremely selfish. I’m walking and talking now because what lies on the other side of an experience with a parent with Alzheimer’s is the lurking knowledge that we’re not done with this disease. It’s more incentive to lean in, to fund and fight for a cure so my kids won’t go through what I went through, and I won’t go through what my mom went through, and we can all discover ways to live life as fully as possible in whatever state we find ourselves down the road.
AWKWARD? OH YEAH. APOLOGIES? NOPE
These days, when I start to explain the “Going Purple” concept to a person or a business, I’m not talking to a blank face for two minutes. It takes about 20 seconds tops for people to start nodding, connecting what I am talking about to something or someone they already know. That knocks the awkward factor down a peg or two, and makes it easier to walk in the next door. I used to make those calls and visits apologetically, in a “sorry to bother you” way but now it’s in a “thank you so much and won’t you please join me” way.
So, if you do want to join me…. Find a walk near you and sign up, support it or volunteer. You can support my team, Team Andy right here, or me personally, in honor of Nina.
Orrrrr, you, your business, your team, your organization can “Go Purple” in any way you like to show support and build awareness for the Walk and the work of the Alzheimer’s Association all next week. Need ideas? Got ideas? Let me know!
COMING UP NEXT:
Pictures and stories behind some of my fave purple peeps.
See you next week!