Some families are interested in learning more about what it’s like to participate in one of our studies or have questions about making a brain tissue donation. As a helpful resource, some past and present ADRC patients and family members have agreed to share their experiences.
Interview with Aurora and Jesús Colon
Q: Why did you choose to participate in research?
A: Aurora: I enjoy participating in research, having previously been a part of the eMERGE program. Secondly, my mother had Alzheimer’s disease, and without any other family history, I felt this was a good opportunity to learn more about the disease and my risk. The fields of medicine and research have always interested me, and being involved in these studies has been a great way to satisfy my curiosity and continue learning about Alzheimer’s disease and aging. I am now in my 70s and have lived my life, so now I want to help others like my grandchildren and great-grandchildren.
A: Jesús: I wanted to find more information because my wife’s mother had Alzheimer’s, and we wanted to have a better idea about her risk. Additionally, I have always been interested in learning more about illness and different treatment options.
Q: What do you enjoy about participating?
A: Aurora: I really enjoy the fact that I am helping the research and both future and current generations. I find great satisfaction in helping others!
A: Jesús: Having never participated in research before, I have enjoyed becoming more knowledgeable about Alzheimer’s disease. Participating has made me more aware of the different types of dementia and how we can help.
Interview with Susan Joseph
Q: What led you to participate?
A: My friend had been involved in research at the James J. Peter VA Medical Center and found out about the studies at Mount Sinai. So we came in and were asked to take part in the program, which includes brain studies and verbal tests for memory. The idea made a lot of sense to both of us.
Q: Tell us about your experience as a participant.
A: I am very impressed by the professionalism and competence of the ADRC staff, as they’ve been supportive and helpful every step of the way. Staff members have scheduled appointments with our needs in mind and have made reminder calls. Coordinators are knowledgeable, polite, and respectful.
Q: You had a spinal tap performed as part of a study. What allowed you to feel comfortable with this procedure?
A: What got me feeling confident was the stated assurance that this procedure poses no risk of paralysis. I understood that the neurologist, Dr. Goldstein, who performed the spinal tap, was a highly qualified and experienced physician. I was further reassured by Mount Sinai’s excellent reputation and by the fact that the hospital would handle any problems that might arise. Additionally, arrangements were made to make the experience as comfortable and convenient as possible. The doctor performed the procedure in a well-equipped patient room, with bathroom and lovely view. After the procedure, we were given a nice lunch.
Q: Was the spinal tap painful?
A: No. What was unpleasant was the awkward “fetal” position I had to maintain—sitting on the side of the bed, my back stretching forward, my face resting on two pillows in my lap. The procedure took around 45 minutes. Dr. Goldstein explained that he could speed it up by using a bigger needle. But the larger the needle, the more likely I would be to have a headache afterward. Understanding the reason for going slow gave me the patience to remain still for the duration.
Q: Would you recommend research participation to others?
A: Yes. Taking part in this investigation is a way of contributing to society. Alzheimer’s is a dreadful disease, and it is important for all of us to help with research. I would certainly recommend participating with the ADRC to anyone interested in this field of research.