Part Four Fading Minds, Full Hearts

Given the scientific facts of Alzheimer’s—an illness marked by profound losses that has no true treatment or cure—it’s easy to succumb to sensationalized images of an unstoppable, worldwide dementia doom.

But hope endures, creeping along the edges of the global consciousness, in the form of individual advocates who are changing the way we see (and care for) people who have Alzheimer’s. It’s a gradually growing guerilla force, battling the disease on multiple fronts.

Advocating for the everyman

Rick and Phyllis June have gone on countless speaking engagements, appearing before lawmakers and grade school children alike.

Like many Alzheimer’s advocates, they are appalled at the lack of funding for Alzheimer’s care and research in the U.S.

The numbers tell an enlightening tale: in the past decade, the number of Alzheimer’s deaths has increased by 68 percent, while the number of deaths from other major diseases (i.e. cancer, heart disease, and stroke) has declined.

Meanwhile, even with the inception of the much-lauded National Alzheimer’s Project Act (NAPA), funding for Alzheimer’s research (just over $500 million in FY 2012) remains a woeful fraction of that allotted for cancer ($5.6 billion) and heart disease ($1.2 billion), according to figures from the National Institutes of Health (NIH).

“It’s not a Republican thing, or a Democrat thing. Until we get more money, we’re just spinnin’,” says Rick.

Most of the time, Rick and other Alzheimer’s advocates end up being shunted to the side, speaking to aides rather than the lawmakers themselves. But meetings with Congressmen are not where Rick and Phyllis June find their greatest fulfillment.

Speaking to young children about Alzheimer’s is the couple’s preferred form of outreach. For obvious reasons, some of the more unpleasant details of the disease have to be omitted when talking to kids, but Rick derives great joy from giving children a space to ask questions and receive information about Alzheimer’s.

It’s a never-ending process, one that is sometimes interrupted by Rick’s disease, but the pair is firm in their resolve to educate others on what it’s like for real people (as opposed to well-known celebrities) who are living with Alzheimer’s. Phyllis June says, “We’ve made a dent, and we’re going to continue to make a dent.”

Inspired by unfortunate circumstances and fueled by passion for their mission, the pair is determined to make the most of the time and opportunities they are given.

“Today could be the best day I ever have. This disease is going to take control sooner or later,” says Rick

Phyllis June flashes him a knowing smile, “For you, it’s going to be later—much later.”

Exposing the philosophy in Alzheimer’s

David is a self-proclaimed exhibitionist. He enjoys sharing his inner life with others—even strangers.

He seldom shies away from an opportunity to share his experiences with people, even if he risks portraying himself in a less-than-flattering light.

As a young doctor, David accidentally aborted a live, wanted fetus because he thought the child was already dead. 

Instead of hiding his grave mistake, he went public with it. After seeking advice and counsel from colleagues—who shrugged off his queries with the frustrating one-liner, “mistakes happen”—David decided to write and publish an article on his experiences in a prestigious medical journal, earning him a reputation among his peers for unflinching openness.

Making the jump from talking about life-altering medical mistakes (an extremely taboo topic) to sharing his insights about living with Alzheimer’s was not a difficult one for David to make.

His blog—which has attracted the attention of major news outlets and is featured on prominent aging care websites—is continuing to attract new followers with his poignant posts.

His journey with Alzheimer’s is also being chronicled by award-winning documentary filmmaker, Larry Engel.

For his part, David hopes his openness will inspire others to seek out more meaningful connections with those who have the disease, “What’s happened with my telling people about my Alzheimer’s has been an incredible deepening of relationships.”

He often refers to his future experiences with Alzheimer’s as an adventure, even though he knows his journey won’t end with a triumphant outcome. “Each of us with this disease must explore it for the first time; each of us faces a unique adventure.”

Marja opts not to spend time on predictions. She simply hopes that she’ll be able to hold on to her bond with her husband as his disease progresses.  (Click to Continue)

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Part Four Fading Minds, Full Hearts