This post was originally published on Dallas Weekly
By Lynn Pearcey
Alzheimer’s Disease is a debilitating monster that ravages sufferers in a painfully slow, methodical manner, attacking the brain, causing memory loss, sweeping behavioral changes, and severe declines in cognitive abilities. It’s the most common form of Dementia, and research shows that 1 in 11 Americans are sufferers. With these types of numbers, chances are everyone has someone in their orbit who has had a first-hand encounter. But here’s a little-known fact about this condition: African Americans are more likely than any other group to receive an Alzheimer’s diagnosis.
Here’s an even more troubling part of that equation. African Americans are more likely to receive the diagnosis, which is concerning. But even more concerning is the fact that when the call goes out for research participants who could potentially yield findings to help eradicate the disease, the Black community has historically been slow to pick up. The truth is that, in most instances, this call with generational ramifications typically goes unanswered.
Hope and Help, Are on the Way
Roslyn Thibodeaux Goodall is on a mission to spotlight and reverse this troubling trend, and for more than a decade, The Hopeful Symposium has been the vehicle she’s used to drive change. Founded in Shreveport, the event celebrates its 12th anniversary in Dallas on November 18th with a panel of powerful Alzheimer’s champions. Each panelist comes with a dual agenda. First and foremost, finding a cure for the disease that wreaks havoc on families across the globe. Second, raising awareness about the plight of the Black community as it relates to Alzheimer’s.
“The panel is exceptional with experts on the frontlines, fighting to find a cure and help those currently struggling with the disease,” says Goodall. From medical research to music therapy to legal professionals who can provide insights into the nuances of elder law, this is perhaps our strongest to date, and we’re honored to have them onboard.”
Suffering Unnecessarily
The Black community is hit by Alzheimer’s twice as much as their closest counterpart. Numbers like these beg the question of why research participation is so low. Goodall believes she knows why. “We suffer unnecessarily, and that suffering is rooted in distrust of the health and medical industry, especially when it comes to anything that has to do with research,” stated Goodall. “The seeds of that distrust were sown in Tuskegee.”
Tuskegee is the site of one of the most gruesome research experiments in history, and the Black community was at the center. Known as the Tuskegee Experiment, Black men were unknowingly injected with the Syphilis virus, and instead of being cured, they were used to monitor the progression of the disease when untreated. “The experiment ended in 1972, but the painful memories still resonate deeply within our community as evidenced by our unwillingness to participate in studies like our effort encourages. We don’t have a cure, not yet anyway. But what we do have is, without question, the most powerful tool a person can have: knowledge. Knowledge of how to reduce the likelihood of being stricken with the condition, knowledge of simple things to enhance the life of the victim and caregiver, and among other things, knowledge of how to eat well to lessen the likelihood of an occurrence. We offer these things, but to activate them, we need participation from our community.”
Silence Isn’t the Answer
There are so many mistruths surrounding Alzheimer’s. Is it contagious? Does it skip generations? Does it only occur in men? The list goes on and on. But in the mountain of mistruths surrounding this condition, one singular truth always comes to the forefront for Goodall. That lone truth is that silence isn’t the answer.
“We can’t afford to be silent any longer. We have to start talking about Alzheimer’s in Black households. It’s a hard conversation but a necessary one. As we enter our 12th year, my commitment is to continue supporting research, encouraging minority participation, and championing the needs of impacted families as we march toward a cure.”
For more information about this event, visit The Hopeful Symposium.
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