Susan has Alzheimer’s disease – but she’s fighting back

With the Alzheimer’s Association International Conference winding down, I thought it would be a great point to reflect on some of the unsung heroes who are critical in making this research happen: participants in clinical studies. Without their commitment, we would not be able to make the types of new discoveries you’ve been hearing about this week. Researchers often say that the biggest barrier to research – other than funding – is finding clinical trial participants. There are more than 100 Alzheimer’s-related clinical studies going on throughout the country, many of which are seeking healthy participants. To find a clinical trial near you , visit or call 800.272.3900.

Susan is one of the unsung heroes who are helping researchers understand more about Alzheimer’s. She shares her story here:

Susan,
Clinical trial participant
Living with Alzheimer’s disease

My typical day would start with a brisk walk with neighborhood friends and a cup of coffee. We talked about our jobs, family and politics. Then I would run home and get ready for work. I worked in high tech as a VP of Human Resources for a company which had 250 employees. We had employees in the US, Japan, China, UK and Germany. I loved my job and often worked long hours, working in the evening in order to make contact with other employees around the world. In my spare time, I would support nonprofits. I was on the board of three separate organizations at different times. I would get up early in the morning and go non-stop until late at night and loved every minute of the day.

The shock and grief I felt last January when my doctor informed me of my diagnosis of Alzheimer’s was heartbreaking. I loved to work, to solve challenges and be helpful to the company and my colleagues. I am 53 years old and was not prepared to throw in the towel. As my doctor described my limited options for treatment, one piece of information that caught my ear was that I might consider participating in a drug trial. While my previous occupation as a high tech executive was over I could see myself supporting research which could create more positive outcomes for those who will be getting this diagnosis in the future.

My doctor discussed with my husband and me a study that the hospital was involved with. I was a great candidate as I was healthy and was diagnosed early in the progression of the disease. It was made clear to us that while the data from the study would be beneficial to the Alzheimer’s research there was no guarantee that I would directly benefit from the drug. As we learned more about what would be involved in the study, it became clear that this would be a significant commitment on our part to go through the testing required to qualify for the study and then hopefully follow through with administration of the drug every two weeks over a period of a year and a half and additional testing to evaluate my progress. This is my new non-profit job!

As we have progressed through the study we have learned so much about the disease as well as met many wonderful doctors, researchers and fellow Alzheimer’s patients along the way. By embracing the search for positive outcomes to my disease I have also found myself speaking to research students and others involved in the care and support of Alzheimer’s patients about my experiences so far.

For those considering joining a drug trial I would first say do some homework with regards to the drug being studied and the organization supporting the research. After being comfortable with the proposed study I found myself excited about the prospect of contributing to finding a cure for this devastating disease. I have met so many wonderful people during this journey and while I would gladly return to my previous life, I have had many positive experiences. I find satisfaction knowing that I am contributing to something so significant: finding a cure for Alzheimer’s.