A Call To Action: We Need To Inform Our Neurologists About The Latest Exercise Research

With about 1,200 journal articles published annually on Parkinson’s disease alone, it’s impossible for practicing neurologists to stay abreast of all developments in the treatment of PD. However, recent research findings regarding the effect of vigorous exercise on PD symptoms are so compelling as to warrant patients calling their neurologists’ attention to them and urging them to advise all their Parkinson’s patients to step up their exercise routines.

The American Academy of Neurology’s evidence-based guidelines on “Neuroprotective Strategies and Alternative Therapies for Parkinson’s Disease” conclude that exercise therapy may be considered to improve function in PD patients, but the accompanying report of its Quality Standards Subcommittee suggested that the magnitude of the observed benefit was small and was not sustained after exercise therapy was discontinued. While this guideline was reaffirmed this year, the original report was issued in 2006 and only cites studies published through 2003. Numerous clinical trials have been conducted during the intervening ten years, and the accumulating evidence suggests that ongoing vigorous exercise may have a neuroprotective effect in PD. [Ed. Note: The AAN’s guideline has recently been repealed, but no additional guidance is provided on the benefits of exercise and physical therapy on the progression of PD.]

Several illuminating studies [were] summarized or linked on [the PD Gladiators website], but a review of recent clinical trials published by The Mayo Clinic’s J. Eric Ahlskog, PhD, MD, in Neurology in 2011 best lays out the case for stressing vigorous exercise in the treatment of PD. While Dr. Ahlskog cautioned that these trials, in the aggregate, do not prove exercise slows PD progression, he concluded that a neuroprotective effect is certainly plausible, if not compelling, and that the overall body of evidence suggests that vigorous exercise should be accorded a central place in our treatment of PD. Several of Ahlskog’s specific conclusions deserve emphasis:

1. Clinicians should specifically counsel patients with PD to engage in regular exercise, sufficient to establish and maintain physical fitness.
2. The choice of exercise should not only be tailored to the patient’s capabilities, but also their interests, so that they will be motivated to maintain a regular routine. The literature does not intuitively endorse any one specific type of exercise, but rather vigorous exercise in general. Any routine ultimately leading to physical fitness should be beneficial.
3. Physicians may utilize physical therapists to design programs for deconditioned patients who need a graduated program. The instructions to the physical therapy team should be clear in stating a goal of physical fitness, beyond simply stretching, gait training, and balance exercises.
4. Although age-related orthopedic conditions may limit some activities, the array of exercise equipment in local gyms and health centers allow many exercises tailored to such problems, including machines where exercises are done while seated.
5. Clinicians must facilitate exercise by appropriately aggressive use of PD drugs. Over the last 2 decades, very conservative symptomatic medical treatment has often been advised, “saving” the best PD treatments for later and arbitrarily limiting dosage. There is no compelling evidence that medication responses can be saved for years later, and similarly there is no good evidence that low doses convey some beneficial effect in the long term. Rather, this approach may translate into lost opportunities. A reasonable goal when prescribing PD medications is to maximize patients’ capabilities to engage in physical activities and potentially achieve the best level of physical fitness possible.

As a result of the evidence presented by Dr. Ahlskog and others, our local APDA Chapter in Georgia is sponsoring several low-cost community exercise programs tailored to the needs of Parkinson’s patients. While the active members of our Atlanta PD community are quite excited by these pilot programs, only a small percentage of Parkinson’s patients in Georgia are taking advantage of them. This is consistent with our impression that participation by PWPs in the PD community—support groups, exercise programs, and clinical trials—is very low. I don’t have figures but understand that only a small percentage of the PD patients in Georgia are active in APDA support groups. And at this year’s Southeastern PD Conference in August, a speaker from the Michael J. Fox Foundation was excited that Fox TrialFinder had recently signed up their 20,000th member. That’s less than 1.5% of the estimated PWPs in the US!

I think if neurologists do a better job of actively advising their PD patients about the benefits of intense exercise, community support groups and exercise programs, and clinical trials, more PD patients would live better with their disease, we’d have a better chance at research advances (and make more efficient use of research dollars–a lot of expensive trials die on the vine because of lack of participation), and we’d reach a critical mass that could ultimately support private- or government-supported exercise facilities targeted to PD patients.

But the first step starts with us. It took many of us months or years to find the PD community and learn [many] tips for living well with the disease, but we can cut out that learning curve for those following us on this journey if we all make sure our neurologists are up to speed on the latest research and urge them to advise newly-diagnosed PD patients to exercise vigorously and work with a physical therapist to design a safe exercise program that includes community-based programs where available.

I had this conversation with my neurologist this week. He’s a fantastic doctor and advises his patients to exercise as a matter of routine practice. But his typical recommendation is tai chi, which is part of the low-intensity portion of my regular routine, and I think he learned something new when we discussed the focus of the studies on vigorous exercise–intense activity outside of the patient’s comfort zone. I gave him a copy of the Ahlskog article, and he immediately thought of several more people who would be interested in reading it. He has over 200 PD patients. He knows many other neurologists. This is how the word is going to spread, from one generation of PD [fighter] to another.