If We Build It, Will They Come? Part I

This post was originally published in the PD Gladiators blog.

Ellie and I attended the Southeastern Parkinson’s Conference hosted by the National Parkinson’s Foundation in August, and for the second year in a row we left inspired. The theme of the conference was Parkinson’s advocacy, and we were encouraged by excellent speakers from the Parkinson’s Action Network to get involved in legislative advocacy and by Israel Robledo, PAN’s Texas state director, to consider research advocacy under the Parkinson’s Disease Foundation’s PAIR program. These are terrific causes that do a lot of good work for the Parkinson’s community, but each of us has to find our own voice.

The voice that resonated the most in my mind spoke during a presentation by a representative of the Michael J. Fox Foundation; a voice from the crowd. The MJFF speaker was proudly expounding the Foundation’s accomplishments, including signing up their 20,000th member in Fox TrialFinder, a program that matches PD patients with clinical trials. Now, the MJFF has every right to be proud. Last year they raised $87 million for PD research, which is probably more than double the research funds raised by all of the other major Parkinson’s charities put together. They have revolutionized Parkinson’s research over the past decade. Their funding may indeed lead to a cure within the next decade. But a woman with young onset PD raised her hand, and in a desperate, frustrated voice asked the question that has plagued me for months (although with the passage of time I’m certain I am paraphrasing):

“I feel like I’m drowning, and you’re telling me a lifeboat is on the way in ten years. Where’s the life jacket I need now?”

Research for a cure is certainly the worthiest of objectives in the larger scheme of things. Making sure Medicare and private health insurers cover the physical therapy we need and all the other rules and legislation PAN fights to get for us? Really worthy stuff. And there are lots of great advocates already working those issues and raising funds with the passion required to get those big jobs done. But I came away from that MJFF lecture with two insights that triggered my passion and have led me to choose a different path for my advocacy efforts.

First, why are there only 20,000 PWPs signed up for Fox TrialFinder? With about 1.5 million PWPs in the US alone (and I believe TrialFinder signs up international participants) that’s a 1.5% participation rate at best. The clinical trials that may be destined to save future generations of Parkinson’s patients are dying on the vine because researchers can’t meet their participation quotas.

Second, why didn’t that voice from the crowd know there are things she could do now to help her live better with Parkinson’s? She had not heard that vigorous exercise can slow the progression of the disease and, frankly, neither had I for the first year and a half after my diagnosis. It’s a story I’ve heard from many PWPs I’ve met at my support group, conferences and online on Facebook. Many neurologists are focused on drug therapy and may recommend general exercise in passing or not mention it at all. I suspect few are on top of the latest research which suggests that the optimal benefit of exercise is obtained when the activity is performed at an intensity out of the PWPs’ comfort zone. (It was news to my neuro when I gave him a copy of a study at a recent visit.)

Upon reflection, it occurred to me that these two insights are related. Newly diagnosed Parkinson’s patients are not getting the word fast enough about the things they can do now to live better with PD. Many neurologists are not advising their patients about the latest exercise research, the benefits of participating in clinical trials (both personal and societal), and the value of community-based support groups and exercise programs. This is a really big problem, and one not easily solved because as far as I can figure there’s no direct pipeline from the patient community to the community of practicing neurologists.

So, you might think, that’s the derivation of this post’s title–the man wants to build a pipeline. Well, as it turns out, I do, but that was a coincidence. I want the PD community to build a massive community-based exercise infrastructure that will get the attention of practicing neurologists and the 98.5% of PWPs who don’t seem to know there’s a whole community of support foaming at the mouth to throw them a life jacket. Then we can build the metaphorical pipeline.

I’ve started approaching these problems by breaking potential solutions into small parts. The first part is to accumulate the basic knowledge that experienced PWPs would most want to impart to those beginning their Parkinson’s journey–the stuff the docs don’t tell you. My attempt at this is included on [Ed. the former PD Gladiators website home page] and in a slightly more condensed form in a brochure I have been collaborating on with our local APDA Chapter in Georgia. They have been amazingly receptive and helpful in making that happen, and I understand that a version approved by their Board is under review by the national HQ. The brochure would, ideally, be replicated on a local level in each state and would offer direct links to community-based exercise programs, support groups, and clinical trials. [Ed.: The local APDA president recently (in 2019) told me that this continues to be the most popular item ordered on the national APDA website.]

The second part of our vision is to encourage the development of the community-based exercise infrastructure in our community and investigate what other communities are doing. That investigation is a (tedious) work in progress, and we can use some help–please drop us a note with information about programs in your area, and we’ll include them on the appropriate page.

In Atlanta, we are fortunate to have several individuals and groups who have become motivated to build the exercise infrastructure at about the same time. Two physical therapists who are totally committed to our PD community have seized the initiative to start PD-specific exercise programs in locations convenient to the most active APDA support groups in our area. The APDA is assisting them through a new “exercise committee,” which may certify instructors and use seed money to encourage the formation of new programs.

My wife facilitates the group in our suburb, and we participate in a new Zumba for PD program started with APDA seed money. The PTs have worked with the Zumba instructor to incorporate elements that will work on PD-specific deficits. Independently, a nonprofit known as the Yellow River Center has begun to offer free or low-cost Tai Chi for PD workshops in the Atlanta area. Again, our support group participated in one of two pilot programs, and now the Yellow River Center is expanding its offerings. Inspired by this surge of activity, and looking for other fun ways to incorporate vigorous exercise into our routine, Ellie and I are working with a retired professional boxer, Paul “The Truth” Delgado, who runs a local gym to build on the success of two non-contact boxing training programs organized in other communities, Punching Out Parkinson’s in Fort Worth and Rock Steady Boxing in Indianapolis. The APDA and NPF are considering supporting this program.

With programs like these in place, we feel that practicing neurologists in our area who are convinced of the value of exercise in combating PD should be willing to hand out the APDA brochures to their patients along with some specific recommendations for an exercise routine and/or a referral to a physical therapist who can design and monitor the particulars. Hopefully, as we build out this exercise infrastructure, new patients will come out and join the PD community and gain from the benefits of physical and social activity. Maybe they’ll learn some tips from more experienced travelers who’ve walked the path ahead of them. Maybe they will join a support group and participate in clinical trials. Maybe a clinical trial that would have failed for lack of participation will succeed and lead the way toward a cure.

In Part II of this post, I’ll share some ideas for a blueprint for building the patient/neurologist pipeline. Without the support of the neurologists, the active participants in the PD community are just going to keep running into the same people at different events, with only the most persistent new PWPs  finding the life jackets that are out there.