Q: What is your name, age, and occupation?
Meg: My name is Meg Duggan. I am 50 years old and I live in Kansas City, Missouri. Until this fall, I was the Executive Director of the Parkinson Foundation of the Heartland. I am now a Managing Partner of Data Driven Health Care Solutions.
Q: Can you tell us what led up to the founding of Data Driven Health Care Solutions?
Meg: My sister Cindy was diagnosed with Parkinson’s disease about 16 years ago, when she was in her late 30s. My father had a much older sister who had Parkinson’s, but our family, like so many, viewed PD as an illness defined by old age and not as an immediate threat. My father also has a neurological disorder, which until my sister’s diagnosis was the elephant in the room. (Interestingly, years earlier when Cindy and I were both in our 20’s, she called me one day and said “don’t you worry you have what dad has when you miss a step or do something oddly clumsy?” In hindsight, I believe she was experiencing PD symptoms 10 years before she realized that something was truly amiss.)
Cindy first began seeking a diagnosis when her right pinky finger began to tremor. She went to a variety of physicians and was diagnosed with tennis elbow, a bad rotator cuff, and “being too type A.” Finally she saw a doctor who remarked that her symptoms looked like PD – but could not possibly be since she was so young.
At that point, she began searching for PD on the internet, and learned that Kansas City was the home to an excellent movement disorder specialist. She still remembers the mixed feelings she had when she was greeted with “Welcome, you have Parkinson’s Disease.” A bit of relief that her condition had a name and sheer terror at what was ahead.
Cindy’s diagnosis led to much family searching. She had 2 very young children, and was quite concerned about heredity and heritability – particularly when viewed through the lens of my father and his sister. My father’s issues were traced to a parasite picked up in Japan. My aunt’s PD was a more typical late-age diagnosis, so we were able to put some of the fears of heredity on the back burner.
Our entire family geared up to join the fight for the cure. Cindy called the local Parkinson Association, and we all became members. At the time, the association was entirely a volunteer organization, mostly made up of PwP and their care partners. After being referred to a late-stage support group, a truly horrible experience for a young, newly diagnosed patient, Cindy started a young onset group and eventually joined the board of the Parkinson Association of Greater Kansas City. After several years, with her help, the group had raised enough money to hire their first employee. I interviewed “blind” and was hired.
Four years ago, I adopted a 12 year old child who had had an utterly horrific life. (Truly the stuff of scary movies. ) He started high school this year, and I was very concerned about not being home after school. Life in the non-profit world is great, but it requires many many nights and weekends – and a huge amount of mental energy. I decided to take her PD Log and see if I couldn’t form a business, and Data Driven Health Care Solutions was born.
Q: What was your experience like as Executive Director of the Parkinson's Foundation of the Heartland?
Meg: I spent 14 years as the Executive Director, building the organization from an all-volunteer group with a budget of $80,000 to a group with 6 full time employees and a budget of over $800,000. We eventually renamed ourselves the Parkinson Foundation of the Heartland and expanded our territory from Kansas City to the surrounding 3 states. These were truly wonderful years for me. I loved the non-profit world. We added amazing programs and events and expanded our membership and our reach.
It was, however, difficult. First, I knew too much about this insidious disease not to be deeply concerned for my sister and her cohorts all of the time. PD truly came to define my life as well as my loved ones lives. I had a dinner party one night and a guest brought buttons that said “No PD.” Everyone pledged $100 if I could make it through dinner without mentioning the “p-word.” I did it – but only for the $1000 raised for the cause!!
More difficult however, was the knowledge that I was having a wonderful, engrossing and deeply meaningful professional life – at the cost of my sister’s health. I had a difficult time shedding those feelings until a young woman told me how very much she wished that her family would engage in her fight. She thought my sister was lucky to have an involved family. I took that feeling to heart and went back to work.
I was also able (as I still am) to serve as an information clearing house for my sister, her children and my parents. I closely monitor medical breakthroughs, new medicines and diagnostic tools, clinical trials and the like. My sister has been known to call me to ask” What’s that pink pill I take called?” I think that my deep dive into PD allowed her to hold it at arm’s length. For a while at least.
Last fall, she began having a lot of trouble with the on/off cycle. I called on my contacts and together, we wrote the PD log. She found it very helpful, her medical team thought it was great, and she got some helpful interventions from its use.
Q: How is your sister's health now?
Meg: My sister, at 54, remains healthy and vital. Several years ago she took 200 high school students to Ireland – a feat I wouldn’t try at my healthiest! She works about ¾ time running a non-profit that helps other non-profits connect with local business leaders for support and education. She is also a minister’s wife – which is a full time job in itself. She volunteers for many organizations, and is closely involved in the lives of her children – one of whom is out of college and working in Chicago, the other finishing up school at Drake University.
Q: What are your future goals for Data Driven Health?
Meg: In the coming years, I hope to monetize the site, probably through the sale of advertising. One thing I won’t do is charge Parkinson patients to use the site – EVER! I know far too well the constant financial drain imposed by this disease.
I am currently working on a log for people who have had DBS to help them get the most concise programming possible. Next up is a log for people suffering from RLS. I hope to cover the gamut of neurological diseases in the future. This is an exciting time for me. I hope that the things I am doing will help empower people to take charge of their health conditions and receive improved care and support.
Meg, thank you so much for the interview! Keith and I are currently working on entering our info into the system, and I will post again after using it for a month or so.