An interview with Ray Willis, Illinois Chapter Board Member
How has Alzheimer’s disease/dementia impacted your life? I became aware of Alzheimer’s disease/dementia about 20 years ago and began using the term in place of senile/senility when observing individuals experiencing difficulty in remembering things. About 12 years ago (2010), my oldest sister and husband visited me in Chicago while in the hospital recovering from “sudden death-cardiac arrest.” As I lay in my hospital bed, my sister wandered off and was later found on the first floor near the exit doors. When hospital staff queried her about who she was and where she was going, her response was that her husband had admitted her to the hospital and that she was leaving to go home; keep in mind, she was visiting me having traveled from her home in Oklahoma. Upon my release from the hospital, I learned that her memory challenge had been diagnosed as Alzheimer’s disease. From this point onward, I observed a steady decline in my sister’s cognitive functions – from memory loss to not remembering my name, to babbling, to slow walking gait, to wheelchair assistance, to irregular eating, to not talking at all, to eventual bed-ridden, and finally making her transition in July of 2022. Although I was not present in her daily life over the past 15 years, I maintained constant contact with weekly calls and personal visits each year. I miss her more today than ever before when I reflect on the time and attention she gave me regarding family matters and assisting me in starting a Bereavement Ministry in my church. Years earlier, my sister had established a “Grief Ministry” at her church in Oklahoma City. I took my sister’s ideas and resource materials and transplanted them into my church. The “Bereavement Ministry”, some 13 years later, is still operating at my church. Thus, Alzheimer’s disease took away my sister, my friend, and my mentor!
Why did you join the Board? I joined the Alzheimer’s Board thinking that I would be able to gain insight into treatment and daily living practices that I would be able to pass on to my sister’s husband that makes a difference, although she was in the latter stages of the disease. In addition, I felt I would be able to pass on these insights and knowledge to other family members, loved ones, and friends.
What Alzheimer’s Association programs and services have benefited you and your loved one(s)? Since joining the Board, I have been trained as a volunteer “Community Educator” and have made a presentation on the “Ten Early Warning Signs” of Alzheimer’s. In addition, I have engaged in many conversations with family, and friends regarding Alzheimer’s disease, the Alzheimer’s Association, and its resources. Further, I am currently pursuing partnership opportunities with organizations and communities of color with the intent of increasing awareness and education about this terrible disease, which will ultimately lead to aligning this population with early diagnosis and treatment. I believe awareness and education are the foundation for increasing volunteers that will lead to increased donations, and last but not least, increased diversity in research and clinical trials! Combined, this is the absolute recipe for finding a cure for this beast of a disease.
Why do you believe others should raise funds and awareness for Alzheimer’s disease? As we progress in finding new FDA-approved drugs and treatment regiments for Alzheimer’s disease, we cannot remain silent but must take on a “drum-major” mentality and align all affected people to resources that will make a positive difference in the lives of our loved ones, especially communities of color. I believe this “drum-major” attitude will witness a corresponding increase in individual donations and government funding.
What do you want others to understand about Alzheimer’s disease/dementia who may not have experienced it first-hand? Alzheimer’s disease affects all people and has a disproportionate effect on people of color! Therefore, it is imperative that research and clinical trials become inclusive of all people. Although there are those that have not experienced Alzheimer’s disease/dementia first-hand, just live long enough and you will be it a loved one or a friend! Alzheimer’s is a disease and we must treat people with it with respect and dignity!
What do you hope to accomplish through the Board in the New Year? I want to continue developing partnerships with organizations and communities of color. In addition, I am hoping to solidify a couple of pending partnership proposals with a faith-based and academic institution. Last but not least, I seek to get more Board involvement in identifying and offering up community and organization engagement opportunities.
What would you say to someone wanting to get more involved?
Find your niche and go for it! Be intentional about what you want to do; bounce it off a peer, receive feedback, good or bad, tweak it and see what happens. And, by all means, be proactive!
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