Coping with Kennedy’s Disease …

… and the use of social support systems to help you with that process.

The dictionary defines "Cope" as "To come to terms with." "Living with" Kennedy's Disease or "coping with" Kennedy's Disease means the same in my opinion.

I received an email (a copy of it is shown below) the other day from Amy Kaczmarek, a Genetic Counseling student at Arcadia University. She asked me to complete an online survey to help her better understand, (1) the benefits of social support systems, and, (2) how we cope with Kennedy's Disease. I am not one that likes surveys (it seems that every week I am asked to take a survey), but I thought I would give it a shot to help Amy out. It did not take very long (perhaps 15 minutes).

I wrote Amy afterwards and asked for a summary of her findings. It might help me better understand how I can support others as they learn to live with Kennedy's Disease. It also might be an interesting topic for a future blog post. For these reasons, I would encourage you to consider taking the survey. It is totally confidential (no personal information is asked).

Regarding the survey questions, several of them were thought provoking. Even though the survey did not ask, I found myself asking where I am today (in accepting and coping with Kennedy's Disease) as compared to ten, twenty, or thirty years ago. My answers would have been substantially different twenty-plus years ago. They would have also been different before I joined the Kennedy's Disease Association (KDA) in the mid-90s. Age (the maturing process) and the KDA have both been instrumental in my growth (acceptance and understanding of my condition).

Knowing that I was not alone in this world (there were others out there in the same boat) was reassuring early on when I was first learning how to live with this condition. The twice a month chat rooms with others that shared my DNA defect were in many ways comforting. I cannot really explain why that is, but for some reason it was important at the time. Attending chats where neurologists and researchers brought forward their message of hope was also critical to me.

In closing, I am including Amy's request for support in her genetics research project.

"Hi, my name is Amy Kaczmarek. I am a Genetic Counseling student at Arcadia University. I am requesting that men with Kennedy's Disease voluntarily participate in a research project. I am investigating the use of various social support systems and ways of coping by men with Kennedy's Disease as my Master's Degree thesis project. Participation would involve completing an online survey that takes approximately twenty minutes. Participants must be age 18 or over, have a diagnosis of Kennedy's Disease, reside in the United States, and have internet access. Consent to participate in the survey will be done online prior to beginning the survey. If you know of other men with Kennedy's Disease who may be interested in participating in this research study, please feel free to forward my information and/or the survey link to them.

If you need additional information please contact me: akaczmarek@arcadia.edu
<mailto:akaczmarek@arcadia.edu>

If I am unable to answer your questions, you may also contact my faculty advisor - Kathryn Spitzer Kim, M.S., C.G.C.: spitzerk@arcadia.edu
<mailto:spitzerk@arcadia.edu> or Phone 215-517-2598

Below is the link to the survey:

http://www.surveymonkey.com/s.aspx?sm=5iyyRzdUPEDpJmyxCY_2bipA_3d_3d
<https://camelot.arcadia.edu/exchweb/bin/redir.asp?URL=http://www.surveymonkey.com/s.aspx?sm=5iyyRzdUPEDpJmyxCY_2bipA_3d_3d>

Thank you for your time,

Amy Kaczmarek"