If We Build It, Will They Come? Part II

Posted On December 7, 2013

This post was originally posted on the PD Gladiators blog.

In Part I of this post I suggested that the Parkinson’s community needs to build an exercise infrastructure in order to coax the secluded majority of people with Parkinson’s to join the community and participate in exercise programs, physical therapy, support groups and clinical trials. But it’s important to reach newly-diagnosed patients early because we’ve already lost most of our dopamine-producing cells by the time of diagnosis, and vigorous exercise is our best hope for slowing the progression of the disease. This portion of my post will focus on some ideas for building a pipeline between the Parkinson’s community and practicing neurologists, the front-line generals in this war who control the information flow to newly-diagnosed Parkinson’s patients.

In an earlier post, I urged all of you, the experienced people with Parkinson’s, to inform your neurologists about the latest research on PD and exercise because (1) there’s no way practicing neurologists can keep up with the flood of research on PD, never mind the scientific literature on all of their other areas of practice, and (2) the low participation rates by people with Parkinson’s in the PD community indicates newly-diagnosed patients are not being advised of the importance of exercise, physical therapy, support groups and clinical trials. We can make a lot of progress with such a grass roots effort. Today, I’ll share some ideas about how the leading PD organizations can facilitate that effort and use their clout to forge a partnership with practicing neurologists on a broader basis.

The key is to focus the attention of people with Parkinson’s disease and the medical community on the role of exercise in slowing the progression of Parkinson’s disease and the resources available to PWPs to live better with their disease (all together now: exercise programs, physical therapy, support groups and clinical trials). We think these core ideas are expressed on our [Ed. former] page Beginning Your PD Journey and are more briefly summarized in a brochure we are working on with the APDA (“Getting Started On Your Parkinson’s Journey: 10 Things You Can Do Now To Live Better With PD”). Similar brochures could be produced by any local or national PD organization, preferably with specific information applicable to the region where it will be distributed. If thought useful, these brochures could point to [Ed: the PD Gladiators web pages devoted to PD Exercise Classes and PD Exercise Research].

Naturally, a stack of brochures gathering dust in neurologists’ offices across the country will not do much good. The blueprint for building the pipeline to practicing neurologists must include a strategy for winning their hearts and minds. We want neurologists to hand the newly-diagnosed person with Parkinson’s the brochure with enthusiasm and advice to start exercising vigorously–outside their comfort zone. We want the neurologists to give their new patients hope that they can help themselves live better with the disease rather than simply masking symptoms with drug therapy. We think that should be a message neurologists should be excited to deliver if we can convince them of its merit.

Here’s how I think we can do that:

I. The National PD Organizations Can Use Their Clout To Sponsor A Grass Roots Campaign By Their Members

Each PD organization could prepare a packet of materials to be presented by PWP members to their neurologists personally. The packet could include (i) a cover letter [sample omitted] citing the clinical studies demonstrating the value of intense exercise that have been published since the last guideline review by the American Academy of Neurology (AAN) and describing the PD organization’s reasons for requesting that neurologists distribute the brochure to all PD patients, (ii) supporting research documentation (including copies of the 2013 Petzinger et al, 2011 Ahlskog, and 2009 Hirsch/Farley reviews of relevant clinical trials), and (iii) sample brochures. [Ed. Links to sample materials, which have since been finalized and distributed by PD Gladiators, and later the Parkinson’s Foundation, have been omitted.]

II. National Or Local PD Organizations Or Chapters Can Work Directly With Local Neurological Organizations

 Every neurologist in Georgia automatically becomes a member of the Georgia Neurological Society, and I imagine all or most states or localities have similar organizations. The Georgia organization holds an annual meeting at the end of February with presentations by members on various topics. A PD organization (or a coalition of them operating in a particular state) could approach a prominent local neurologist to present recent findings on exercise therapy and PD at the annual meeting. The presentation could include recommendations to advise all PWPs to add vigorous exercise to their regimens, refer them to physical therapists and local support groups, and distribute brochures. Consideration could be given to including a nationally-known expert on PD and exercise like Dr. Becky Farley, the innovator of the BIG and PWR programs,  in the presentation.

Alternatively, a presentation could be made at a specially requested luncheon or other meetings or the PD organization could approach the neurological society about ways to use their mailing list (email or hard copy) to reach out to local neurologists about important new findings on exercise therapy and PD.

III. Reach Out To Practicing Neurologists Attending the American Academy of Neurology’s Conferences

The national PD organizations, or a coalition of them, could explore alternative ways to reach neurologists attending the AAN annual conference in Philadelphia the week beginning April 26, 2014 or in Washington, DC the week beginning April 18, 2015. The AAN has over 26,000 members and expects more than 11,000 attendees at each conference. I contacted AAN, and they suggested two viable ways to present information at the conference:

      (a) Conference Exhibitor: AAN allows up to 20 nonprofits to exhibit for free in a designated area or at a discounted rate (about $1000) for a booth in the main area of exhibition hall. In both cases, furniture rental, carpeting, etc. are extra, but should be available for less than $1,000 based on pricing I found for other conventions. The deadline for priority booth assignment at the 2014 conference was November 6, 2013, but exhibit contracts are accepted thereafter. A PD organization could use the space to deliver a national version of the “Getting Started On Your Parkinson’s Journey” brochure and/or information with the more specific goal of focusing neurologists on the importance of communicating the benefits of intense exercise to PWPs.

      (b) Education course proposal: The deadline has passed for proposing an education course for the 2014 convention, but the deadline for the 2015 conference is May 1, 2014. There are about 250 courses offered at the 2014 conference, 16 of which relate to movement disorders (and four specifically to PD). A PD organization or coalition could deliver a course on exercise therapy and PD.

IV. Work With A Prominent Neurologist To Draft An Updated Evidence-Based Guideline 

 If supported by clinical trials published since 2006, a PD organization could have the clout to approach a prominent neurologist who is a member of the AAN to draft an updated evidence-based guideline in accordance with the AAN’s guideline development process for a recommended protocol regarding the effectiveness of various types of exercise therapy in improving motor function in PD patients. The current guideline contains a Level C recommendation (“possible effectiveness”) that exercise therapy may be considered to improve function, but notes that the magnitude of observed benefit is small and benefits are not sustained when therapy is discontinued. The physiotherapy interventions included multidisciplinary rehabilitation including standard physical therapy and occupational therapy components; “cued” exercises with visual (mirror), auditory (metronome), and tactile feedback; treadmill training with body weight support; balance training and high-intensity resistance training; and active muscle therapy. The guideline was adopted in 2006 and reaffirmed this year, but the underlying report does not cite the results of any clinical trials published after 2003. The scientific literature produced over the past decade seems to suggest a more prominent role for exercise and physical therapy in the treatment of PD. [Ed. Link omitted. I circulated a petition on Change.org in 2014 requesting action by the AAN and the AMA–the AAN has since revoked its weak guidance on exercise.]

Any new proposed guideline would be subject to a rigorous review, including public comment. Consideration should be given to whether the Parkinson’s Action Network–a coalition of the major national Parkinson’s organizations–could be an appropriate vehicle to initiate a grass roots campaign to generate overwhelming support for the revised AAN guideline within the PD community.

 V. It Starts With Us

 If you’ve read this far you probably agree that the PD community needs to reach out to practicing neurologists to focus them on the need to advise their Parkinson’s patients of the latest developments in PD exercise research and the resources available to them in the community to help them live better with PD. I’m working with the APDA chapter here in Georgia to produce and distribute the brochures described above, a project that is progressing nicely. I have already provided my neurologist with a copy of the Ahlskog study and told him about the exercise programs in our community. He had not been aware of the latest findings and accepted the information enthusiastically and promised to pass along the information to his 200-odd other PD patients.

If you buy into what this website is all about, please use the ideas and templates provided here freely to spread the word. Start with your own neurologist. If you have contacts with a local or national PD organization, share a copy of this post with them and encourage them to join the fight, either on their own or with a coalition of other organizations.  Register as a PD Gladiator [Ed. go to the Parkinson’s Foundation Georgia’s website] and help get a national discussion going by commenting on this site. Share this post on Facebook in your Parkinson’s groups, Tweet it, e-mail it–just don’t ignore it! If we don’t build it, they won’t come. [Ed. The Parkinson’s Foundation is now deeply involved in this movement after acquiring the PD Gladiators Fitness Network in 2018. See my post “Turn, Turn, Turn: A Time for Reinvention,” which summarizes the actions we took when we couldn’t get the APDA or NPF to take the project on in 2013.]

I understand these suggestions would take substantial effort and resources to implement on a national level, but creating good exercise habits in PD patients soon after diagnosis, and maintaining them for as long as possible, will help many afflicted individuals live better with their disease and will pay huge public health dividends (maybe the subject of a later post).  Building an infrastructure of community exercise programs is a major first step, but building the pipeline to practicing neurologists and getting the message out that PWPs should be exercising at an intensity outside their comfort zone—are the keys to yielding the type of participation figures that will ultimately support expansion of the infrastructure to meaningful levels.

If we build it, they will come. [Ed. They did…and still are!]