Teaming Up for Parkinson’s Research and Care: A Patient’s Role

 Originally published 7-16

“Based on the exam, I am fairly sure that you have Parkinson’s. I can’t be 100 percent sure, as there is no test to confirm the diagnosis. There are a variety of symptoms you could experience, and no way to know how quickly it will progress. But no need to overreact — there are far worse things to have. Let’s meet again in three to six months.”

 

Often times, when I meet another person with Parkinson’s, we swap our “d-day” (day of diagnosis) story. And they usually sound something like mine: after experiencing a myriad of symptoms (dizziness, stiffness, fatigue), we go from doctor to doctor seeking answers, until one day, one of those doctors says the words above. We leave the office not knowing much about our disease or how to manage it. That’s what happened to me.

 

As a newly-diagnosed person with Parkinson’s, life seemed daunting. But eight years later, as an informed patient advocate, I am working with researchers on a three-year site clinical research study (funded by PCORI with $1.5 million) investigating how palliative care can make life better for patients and caregivers.

 

Here’s how it happened and why it matters to research.

 

Shared Concern and Shared Passion for Palliative Care

Luckily, soon after my diagnosis, I was referred to movement disorder specialist Benzi Kluger, M.D., M.S. He eased many of my worries and helped me better manage my disease.

 

After getting to know each other better, Benzi and I discussed our shared frustration about Parkinson’s care. I found out that the “d-day” stories aren’t just frustrating for patients, they are also concerning for doctors who care for people with Parkinson’s.

 

Over time, as we discussed these challenges, some plans started to take shape.

 

First, Benzi had an idea for improving palliative care for people with moderate and advanced Parkinson’s. In this plan, a team — a doctor, nurse, social worker and chaplain — would provide care, planning and counseling services to people with Parkinson’s and care partners before end-stage disease. The team would help navigate decisions surrounding end-stage care, helping to ease angst and heartache.

 

Second, in addition to providing feedback on Benzi’s plan, I put together another one for the earlier stages of Parkinson’s — a plan to improve the “d-day” experience so that patients and care partners could take ownership from the day of diagnosis onward.

 

Together, we sought to better support those living with Parkinson’s, at all stages.

 

Working Together

At around the same time, through my work as a trained Research Advocate with the Parkinson’s Disease Foundation, I heard of opportunities to apply for research funding from the Patient Centered Outcome Research Institute (PCORI).

 

After speaking to Benzi about this news, he put together a proposal (which I reviewed) asking for funding for the first national Parkinson’s palliative care clinical study.  

 

A few months later, it was approved for $1.5 million! Now, we are working on a three year research study to understand how palliative care might improve quality of life for patients and care partners. Not only that, we are involved in other initiatives surrounding palliative care in Parkinson’s. For example, Benzi organized the first international PDF conference on palliative care in Parkinson’s, where I presented my insights in front of leading scientists. I’m happy to say those scientists not only listened to my insights as a patient, they also heard them and used them to move ideas forward for improving care.

 

Lessons learned

What’s the moral of the story? As patients, we may not realize that we have the opportunity to provide meaningful input to researchers. But we do.

In fact, soon after my own diagnosis, both Benzi and the team at the Parkinson’s Disease Foundation told me something — that as a person living with PD, I was an important member of the Parkinson’s research community.

I wasn’t sure what this meant at first. But now I do.

 

And I would go a step further. I would say that we as patients not only have the opportunity to advise researchers, we have an obligation to do so. Researchers need to be sure they are searching for answers to the right questions. In order to do that, they need to understand what is important to us, the patients.

No matter how astute they are, researchers (in most cases) don’t know what it is like to live with Parkinson’s. I don’t have Benzi’s expertise and he doesn’t have mine.

But together we have both. If we are ever going to improve lives and end Parkinson’s, from diagnosis forward, we need scientists and patients on the same team.

Kirk Hall of Highlands Ranch, CO, is a Research Advocate with PDF who participated as part of the faculty for the inaugural PDF “Palliative Care in Parkinson’s Disease Conference” held last October in Denver.  He also coordinates the patient/caregiver advisory council for Dr. Kluger’s PCORI funded study, “Does Outpatient Palliative Care Improve