I am living with Alzheimer’s: My advocacy story

by Julie Burger

Julie Burger HeadshotJulie Burger was diagnosed with Alzheimer’s disease in 2016 at age 76. Born in Puerto Rico, Julie moved to the United States to attend school, graduating first in her high school class. In college, she majored in physiological psychology and earned a master’s degree in human resources. Julie has worked in various executive and volunteer roles for the American Red Cross for the past 50 years. She speaks six languages, is married to her husband Les, and has three sons and six grandchildren.

Julie has been a staunch advocate since her diagnosis in 2016. She has shared her story locally, regionally and nationally to raise awareness and advocate for better care, support and research for people affected by Alzheimer’s and dementia.The following is the speech she gave at the Alzheimer’s Town Hall in Vancouver this year:

There was a time when I enjoyed, and was quite good at, speaking extemporaneously, but that is no longer the case. So please allow me to read some comments to you.

My story is no different than that of thousands of others who are afflicted with this disease. It took me a year or more after I realized I was experiencing significant memory and cognitive issues to tell my husband. But different than others, once I did so, I soon was evaluated. As the disease progressed, the next year, 2016, I was diagnosed with early-stage Alzheimer’s. While working with a neurologist, I was fortunate enough to undergo an enhanced PET scan. The presence of beta amyloid plaques confirmed the diagnosis. A year and a half has gone by and I find myself driven to advocate for public awareness and early diagnosis, for research that will eventually result in treatment and cure and even prevention. And I urge communities to provide adequate support for patients and caregivers. I have a wonderful team providing my care, a primary care internist, a neurologist, a neuropsychologist and a husband who assures that my care is appropriately coordinated.

I was embarrassed at how little I knew about the disease. Becoming engaged with the Alzheimer’s Association prompted my learning a great deal about the disease and its impact on individuals, families, and communities. There is a great deal of excellent reading material available.

Educating both the public and health providers is essential if we are to recognize the beginnings of cognitive dysfunction. Patients need to know when to ask their providers and providers need to have and to use appropriate screening tools for their patients. Just as has been done to educate the public about heart attacks and strokes, there needs to be a similar campaign for Alzheimer’s and other forms of dementia. Early diagnosis may result in therapy that has a better chance at success, but it also gives the patient and family time to plan for the future and take whatever steps they deem appropriate.

It has been my understanding that patients, once diagnosed, often retreat to their homes, losing their social and community connections. That is probably the worst thing they can do. When I meet people, I often tell them I have the disease and the response has been remarkable. Without exception, it has been one of caring, of reaching out, and of inclusion. My friends and acquaintances include me in all the activities I was engaged in before and that has helped me a great deal.

I play computer games and believe it or not, I play scrabble online with as many as 40 people. It is my goal to win at least half the games I play, and thus far, I have been successful. While I don’t read books very much any more because I can’t remember what I’ve read from one day to the next, I do read the newspaper and articles and short stories. My smartphone has been a godsend. I have learned to make lists and plaster notes everywhere.

While I pay attention to brain exercises, I do less well with physical exercise and am making an attempt to correct that, as well as to eat more nutritious meals. I have developed an enormous sweet tooth since my diagnosis.

My husband would tell you that his greatest challenge is to find the right balance between protecting my independence and providing for my safety. In my opinion, he walks that line very well, though there are times that I react to his “hovering.” We have learned that all care partners are faced with that same issue.

My husband and I attend a support group which we both find very helpful. More such programs would be of benefit, as well as having more venues in the community for cognitively impaired individuals. For example, a couple of restaurants in the county have trained their staff in dealing with cognitively impaired individuals and have set aside a time each month for them and their care partners. Other communities have established outdoor activities and the like.

One final point: I am sometimes asked if I am afraid. Yes, I am. It’s just that the hope of conquering this disease is much stronger than the fear of failing.”

 

 


Do you want to share your Alzheimer’s advocacy story? On Feb. 19 Join Alzheimer’s advocates in Olympia as we press state legislators to fund better care and support and other priority recommendations in the Alzheimer’s State Plan.

Registrants receive issue training and lunch before their teams visit Senators and Representatives in the afternoon.

To register, click HERE

For questions about Advocacy Day, contact Peter Newbould: pnewbould@alz.org or 206.529.3867.

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