Newtowner Is Newest State Ambassador To Alzheimer’s Association

By John Voket

Ed Bryan can put his own personal pain into perspective when he recalls the agony of seeing his mother and grandmother suffering the escalating effects of Alzheimer’s disease. But when he considers one particular statistic, and all the children and grandchildren who will share his experience in their own lifetime, Mr Bryan decided to step up and do something about it.

“Today, 70,000 Connecticut residents are among 5.4 million Americans suffering from Alzheimer’s disease,” Mr Bryan told The Newtown Bee during a recent interview. “But by the end of the Baby Boomer generation in 2050, that number will exceed 13.5 million nationally, a three-fold increase.”

Mr Bryan recently decided to turn his own experience into advocacy, volunteering to become Connecticut’s latest member of the Alzheimer’s Association Ambassador Program. In that capacity, his charge is to become acquainted with US Congressman Chris Murphy, to follow the lawmaker’s activities related to Alzheimer’s programs, research, and funding at the federal level, and to advocate to the congressman on behalf of the association.

“Connecticut is facing a substantially greater threat from Alzheimer’s than the national median because so many young people are leaving the state, which creates a future where the majority of residents will be older and more proportionally predisposed to getting the disease,” he explained.

The Newtowner made his first junket to Washington, D.C., about three weeks ago to a forum on Alzheimer’s, and was shocked to learn how minimally the federal government funds research on the disease.

“When you look at how this affects individuals and their entire realm of caregivers and family members, how can this not be walking down the middle of Main Street with cymbals crashing? I mean, hello...unless we get some traction on research, Alzheimer’s will contribute to breaking the bank for Medicare, Medicaid, and Social Security by the time our kids are taking care of us.”

While he is passionate about the cause and the need to exact political pressure to drive funding for research, Mr Bryan is equally passionate about what the Alzheimer’s Association is doing for people dealing with the illness today. In fact, his father eventually sought and received services for Mr Bryan’s mother when his retired parents lived in South Carolina, before she succumbed to the disease.

“In the beginning, before things got really bad, he received information from the association and eventually took advantage of their respite for caregivers program,” Mr Bryan said of his father.

When considering the kind of funding that may be required to successfully administer Alzheimer’s research, Mr Bryan believes that expense is justified because of the likelihood it will have collateral benefit to individuals with other illnesses like Parkinson’s and other similar brain diseases. The Newtown ambassador is also concerned because he is learning that Alzheimer’s is affecting individuals at younger and younger ages.

“The onset is touching individuals as young as 18 and there are many more diagnosed between the ages of 18 and 40,” he said.

Thinking back to his childhood, and subsequent stories he’s heard about his maternal grandmother, Mr Bryan is convinced she, too was a victim of Alzheimer’s disease.

“I was 9 or 10 when my grandmother died, but from what I understand, she was probably a victim of misdiagnosis,” he said. “As I grew up and heard stories about my grandmother, it mirrored the experience I had with my own mother. She went from doting on my every move to a woman who didn’t even know who I was.”

Like many who begin showing signs of the dementia associated with Alzheimer’s, Mr Bryan saw how at first, his father would cover for his mother when they were out in public.

“It was sweet, but also disheartening to discover because for awhile the rest of us didn’t know how bad my mom was,” he said. “I remember one day when they were with us at dinner, and he was leading her about some of the items on the menu. And it seemed like a perfectly normal conversation until I looked over and saw my mom had been holding her menu upside down the entire time.”

Eventually, what Mr Bryan described as the onset of “kind Alzheimer’s” changed, with his mother beginning to suffer from extreme fright and a skin neuropathy that caused her extreme pain every time she was touched. The disease also took the ultimate toll on his dad.

“My personal plight is a combination of the loss of my mother and the loss of my father two years later, as a direct result of not taking care of himself as he cared for my mother,” Mr Bryan said. “So now I’ve made it my mission to keep Congressman Murphy’s staff aware of the Alzheimer’s Association’s goals and current pending legislation.”

Each month at least one hour of Mr Bryan’s time is spent on a conference call with other ambassadors from around the country. During these calls ambassadors receive training, inside information about what is happening on Capitol Hill, and assignments to engage their targeted lawmaker. 

Ambassadors are also asked to attend the annual Advocacy Forum in Washington, D.C., where they will have the opportunity to meet with their member of Congress and advocate for the Alzheimer’s movement.

Mr Bryan believes that today many doctors are still unable to make the proper diagnosis early. And many times the diagnosis, as a cause of death, is not documented, losing the inertia for greater funding to nondescript causes such as simple pneumonia.

“These causes of death, as I am sure you are aware, are what drive the funding of research,” Mr Bryan said. “I have been astonished at the lack of press and general awareness regarding the cost of this affliction, both in dollars, and more importantly, in personal tragedy.”

To learn more about the work of the Connecticut Chapter of the Alzheimer’s Association, visit www.alz.org/ct.