They wanted the personal touch of a mother and daughter talking about why my mother is so awesome and involved. (OK, so maybe the author is biased. Just a tad.)
In the end, I wrote a novel, so only a small part appeared in the newsletter. See the whole piece below.
It’s one of the hardest stories I’ve tried to tell. My mother’s role and involvement in a PPMI study to help find biomarkers for Parkinson’s disease. How do you tell a story of a person who’s willing to dedicate herself to a five-year trial? How about a person who is doing that, while helping raise money for a cure, run a support group, and be a continuous support as a caregiver to her husband suffering with the disease. Suffering, I guess, is the wrong word. He’s thriving. And she’s a big part of that. So how do you tell this story of your mother, and hope it does her justice?
Kate Harmon: As a family, we’ve done a lot for the Parkinson’s community — from fundraising for the Michael J. Fox Foundation, to running a support group, a blog, and a website aimed at helping people see our struggle and perseverance through this journey. Why did you decide to participate in the PPMI study?
Cecily Harmon: We first heard of PPMI when we went to a symposium about clinical trials and representatives from the Michael J. Fox Foundation were there. They were talking about PPMI and the need for patients and controls. I thought, “Oh this would be great. I can do something. I see Bob struggling with Parkinson’s every day, wishing I could help.”
We’ve talked about this being a family journey. This was an opportunity for me to be a control. Bob’s doctor’s office in Tampa is one of the national sites.
Kate: What has the experience of participating in the study meant to you?
Cecily: It’s fulfilling and important to our family and a lot of people.We’ve met so many people in our support group who are advanced in the disease process and cannot do what we do. How can we not fight for them? How can we not take up the banner for them and others?
Kate: Now this is a five-year study. Was that something that concerned you?
Cecily: I did think five years is an awfully long time. But I know how important it is to take samples over a long period of time in research to compare results of PD patients to the controls. It’s only a couple of visits a year, and it’s not a big time commitment.
Kate: Do you think that all those years you spend doing research in the University of Alabama — Birmingham’s microbiology department helps you see this more clearly than some?
Cecily: Having done research for 20 years, I know the value of research and having subjects. If you don’t have participation, how can you get any results? Having controls is an important comparison.
Kate: What are your hopes for the PPMI study? Some studies are looking at ways to treat the disease and its symptoms. PPMI is looking for biomarkers that could be an early indication for those seeking a diagnosis.
Cecily: I have heard that results are showing differences in spinal fluid between controls and PD patients. I can’t wait for the end to see what they’re going to find. If there could be a definitive test that makes initial diagnosis easier.
Kate: Because with Dad, it took several years and a lot of doctors before one of them put those symptoms together, right? Two years that he could have been started on treatment.
Cecily: I think about your Dad and how he did have the disease for years before he was diagnosed. It’s a common complaint of people we know. Wouldn’t it be great to have an early test? Knowing a biomarker could be like a blood test for diabetes. It’s definite and can get you started on treatment right away. It also eliminates the time some people waste being treated for other diseases they don’t have, before it’s revealed they have PD.
Kate: What is your favorite part about participating?
Cecily: Just being a small, but important part in the outcome of such an significant project that could help so many people. I feel good because I can do something.
Kate: Mom, I know this going to sound cheesy, but knowing how it makes you feel now … have you ever thought about what it’s going to feel like if something you are a part of leads to something that makes life easier for people like dad? And you’re a part of that.
Cecily: I haven’t really thought about it. It’s such an important part of the process but we cannot make progress without people contributing in trials. It’s so exciting knowing that I’m a small part of it.
It’s something I’ve chosen to do, not something i have to. Bob’s proud of me. He goes to every visit and sits in waiting room. After each visit, he takes me out to lunch at my favorite restaurant.
He’s not the only one who’s proud, Mom. Emily and I are, too.