My Alheimer's Story

I was in my early to mid 50’s when my mother was diagnosed with Alzheimer’s.
Then when I was 61, my wife and I were preparing to dine out in celebration of our
38th wedding anniversary when I received a phone call from California. My sister told
me that my mother had just died due to her Alzheimer’s.

I had been diagnosed with early stage Alzheimer’s several years after I learned of
my mother’s Alzheimer’s diagnosis. I was employed as a State of Wisconsin Probation and Parole Agent in downtown Madison when diagnosed. I was eventually forced to leave this work. I really wanted to continue my job with accommodations as specified for some conditions under disability law. I discussed options like voice- generated documents, smaller caseload, and other accommodations to help me complete reports. My office had insufficient clerical workers for the number of agents assigned to the office and timeliness of written reports is a significant factor in how parole officers are evaluated. My employer did not offer me accommodations.

With my life experiences as an African American male, I know I could have continued
to positively affect others, especially young African American men, who represented
a high percentage of my case load. But, in a letter I received from my employer,
I was told that due to my diagnosis with dementia I was no longer able to perform the
duties of employment as an agent of the state of Wisconsin.

When I first joined the Alzheimer’s Association it was primarily to help me deal
with issues of my mother’s diagnosis, with her living in California with family and me in
Wisconsin. More recently, I joined with other Alzheimer’s Association members to advocate for the issues of all who have a dementia diagnosis. We advocate with elected legislative, state, and federal officials. We advocate with State of Wisconsin employment
officials to urge them to make accommodations for others in our situations, now and in
the future.


NATIONAL PRESS In February 2008 I was interviewed by USA Today about a survey conducted for the Alzheimer’s Association and the American Heart Association during Black History Month about combined risk factors.

As an African American I am more at risk for diabetes and other cardiovascular
problems. What I said in the article was that I had no idea that diabetes and other cardio
vascular problems put me at more risk for Alzheimer’s. I was like most African Americans in the survey in that I did not realize that high blood pressure and high cholesterol increase the risk for Alzheimer’s, not just for heart attack and stroke.

STATE PRESS In May of 2008, through coordination with the Alzheimer’s Association, my wife, Bridget, and I traveled to Washington, D.C. We helped educate lawmakers about many memory loss issues. We told them about our needs for more research and better treatment options. While in Washington in conjunction with Senator Kohl’s
congressional hearing on aging we were interviewed by the Milwaukee Journal Sentinel.
In response to the reporter’s questions I explained how I sometimes forget things. I said
I have trouble concentrating on a task at hand, like sometimes paying our bills on time.
On occasion in talking, I have to say, “Where was I going with that?” when I lose
my chain of thought.
I recommended the movie “The Notebook,” about a man who visits his ailing wife
in a nursing home and reads their love story to her even though she often cannot remember him as her husband and is sometimes upset with his caring demeanor.
When I lost my way in telling my story for the Milwaukee paper, my wife Bridget intervened, speaking up and helping me get back on track. However, she went on to say
that she worries I would one day forget who she is. I told her, in front the reporter, “I’ll
always know who you are.”

LOCAL PRESS I was interviewed by The Madison Times after speaking to a group primarily of members of the African American community at their South Side Center. I
told my story about how both my mother and aunt were diagnosed with Alzheimer’s. I
explained that high blood pressure and high cholesterol increase the risk for Alzheimer’s, not just for heart attack and stroke. Diabetes that many of us persons of color have is also a risk factor for Alzheimer’s. I said I wish I had gotten the message earlier. If I had known earlier, I might have made more of a point of continuing to exercise and watching my diet to prevent my midlife weight gain, diabetes, and high blood pressure. I may still have developed the disease. But I wondered aloud whether with those precautions I just might have delayed it long enough to continue working years longer in my chosen profession. I did not take these precautions soon enough. If it is too late for me, it may not be for those in the audience.

Photo of Darryl receiving State Alzheimer’s
Award for advocacy