Saturday, April 30, 2011

Interview with Meg, of Data Driven Health Care Solutions

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?
  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.

Wednesday, April 27, 2011

What Am I Worth?

For years the question from Keith has always been How will I provide for my family if something happens to me?  We have gone to great lengths to ensure that our family will be taken care of should the worst happen.  We have prioritized, and the life we now live reflects what matters most to us.  We purchase used vehicles, don't use credit cards, paid off our debts, and bought a lot of life insurance.  For Keith.  You see, to Keith the worst that could happen would be if he left me in a home I couldn't afford without any money to pay the bills, buy groceries, raise the kids. For me, the worst that could happen is if I left him with all the kids, plus PD.

Keith is wonderful with the kids, but let's face it - he just can't do all the stuff that I do.  There is a huge gap in the energy levels alone.  Raising three kids, homeschooling, keeping up the house, running all the errands and doing all the chores, working a full time job, plus dealing with a degenerative neurological disorder might be a bit much for the man to handle alone.  Therefore, a hefty amount of life insurance is in order should anything horrible happen to me.  But how much?  What am I worth?

Tuesday, April 26, 2011

It's About Time

Keith and I are a little late in the game when it comes to watching the film Love and Other Drugs, but we aren't much into movies, so better late than never.  Although not the best film ever made, it's about time we had a real Hollywood movie with A List actors portraying what life with PD is like.

The film revolves around Jamie (Jake Gyllenhaal), a pharmaceutical rep and his love interest, Maggie (Anne Hathaway), an artist who suffers with Young Onset PD.  It's difficult to tell if this movie is about the pharmaceutical industry, Parkinson's disease, or love, because the plot is all over the board and changes direction rapidly.  It seems to want to fall into the typical romance-comedy genre, but the over-the-top explicit sex scenes and the somber reality of PD cause it to fall short of its mark.  In fact, the best thing about this movie is the justice it does to Parkinson's disease.  Tears streaming down my face,  it became increasingly difficult not to break down and openly weep.

As part of the back story, Maggie briefly explains her journey to a correct diagnosis, an important little tidbit often forgotten.  Most people don't realize that it can takes years to get an accurate diagnosis of PD.  She also discusses her lengthy list of PD meds.  Hathaway does an impressive job of portraying the early stages of Young Onset PD, with all its frustration, pain, emotional ups and downs.  We see the pinky tremor, we see her painfully trying to open one of her bottles of meds, we see her unable to do something as simple as open a package of Pop Tars, we see her cry in agonizing despair when she is unable to refill her prescription on time.  Someone in the research department, along with Hathaway, deserves an accolade for the reality of the disease they were able to find and bring to the film.  Especially poignant was the scene at the Parkinson's convention where real-life PWP speak about the disease, showing a vast array of symptoms and stages of PD.  It was during the Parkinson's convention that a scene truly spoke to me.
While at the convention Jamie meets a man whose wife is in the final stages of the disease.  Jamie asks his advice and the man tells him to run.  In fact, he goes on and on about how marrying his wife was the biggest mistake he ever made, how fast Jamie needs to run from Maggie, how soon he will be wiping up his wife's shit.  My jaw hit the floor as the tears started to pour.  Never before have I seen such a realistic portrayal of what those of us on the other end, those of us who happen to be young and fall in love with a PWP, go through.  The words Jamie heard from this bitter man are words I have often heard myself, almost verbatim.

For the past five years, with the exception of three very lovely ladies and their mates, any time I have asked anyone for advice the response is always the same - run.  When I ask for advice I am looking for something real, something tangible.  Which is better - pullovers or velcro-up shirts?  Wheelchair or mobility scooter?  How do get them in and out of the shower safely?  Any little tips for the curling up toes?  Give me something I can use, something real.  Just don't tell me to run.  I wonder if my questions, with all my enthusiastic optimism, is offensive to them?  Does it somehow make their own pain, their own sorrow, less valid?  Is that they way they see it? 

After watching this scene, I pulled it together enough to turn to Keith and say "Wow!  I hear that all the time."  "Really?  Still?" he replied.  We held hands, tears streaming down both our faces.  "Yeah, but I'm not going to run," I said.  At that moment we were both deeply moved, him by the negativity I face from others, and me by his compassion.  By the end of the film those roles reversed, as Maggie tells Jamie that she will need him more.  She will need him more than he could ever need her.  That is what Keith voices to me so often.  This time, I was the one crying in compassion for him and all that he goes through with this disease.

For a couple who rarely watch movies, this one really hit home.  It spoke to us on a level we still can't quite explain.  Maybe it was seeing it on the tv that did it, or knowing that people actually took the time to research and learn all they could about PD and cared to portray it with dignity and respect. Maybe it was seeing ourselves, each other, reflected back upon us.  At any rate, this film is a must see for anyone dealing with Parkinson's disease.

Friday, April 22, 2011

Thank You for Supporting the APDA!

Thanks to all of you who are supporting the APDA and Life With Shaky by purchasing products from our shop!  As most of you know April is Parkinson's Awareness Month, and all proceeds from Life With Shaky go the the APDA this month.  This has been our most successful month in sales to date!  We so appreciate all our supporters!  But it's not over yet.  You still have one more week to buy our merchandise and support the APDA!

Speaking of the APDA, they have recently named our very own G. Frederick Wooten Jr. MD, as their Scientific and Medical Affairs Advisor.  Keith sees Dr. Wooten several times a year, and we can't say enough good things about him.  Congrats Dr. Wooten!

We have taken a much-needed break from the blog for the past month as we focus on end-of-year schoolwork and another non-PD charity event, but we do have several more interviews to post, including videos by Keith and myself.  We will get on those following Easter. 

Thanks again to all those supporting the APDA through Life With Shaky!