Disease-modifying Medicines: Hope or Hype?
I was recently asked to take part in a panel discussion hosted by the European Parkinson Therapy Centre. We were asked to provide rationale for the potential of different “medicines” to change or modify disease progression. The “medicines” discussed included pharmaceuticals, gene therapies, nutrition and exercise. There were several different questions for the panelists. I will summarize my answers in defense of exercise as medicine for two questions below with more to come in future newsletters!
This is GREAT information that you can use to educate and empower your clients and community about what IS possible with exercise. Become an advocate for change! Raise awareness of the need for PD-specialized rehabilitation and community exercise professionals working collaboratively to increase access to “exercise as medicine” for LIFE! That is OUR MISSION at PWR and it was so much fun to participate in this webinar to raise world-wide awareness of WHAT we already do and WHY.
Simon Stott (Moderator) from Cure Parkinson’s; Thomas Foltynie from University Central London; James Beck from Parkinson Foundation; Laurie Mischley from Bastyr University; Becky Farley from Parkinson Wellness Recovery (PWR)
Question #1 Why after 200 years there is nothing to help stop or reverse Parkinson disease?
Why after 200 years there is nothing to help stop or reverse Parkinson disease?
The research on rehabilitation and exercise was severely lacking until 2000. It has only recently been valued as an integral evidenced-based part of “the healthcare team” for a person with Parkinson (PWP). But we have only just begun! The next step is in developing new healthcare models for the implementation of exercise and rehabilitation as standard of care - one that begins at diagnosis and is sustained for life. Here’s why.
The dogma of YESTERDAY (1813 – 2000)
Ever since 1813, when Parkinson disease (PD) was first characterized by Dr. James Parkinson, then more completely described in medical textbooks in the 1870’s by the founding fathers of Neurology, Drs. Jean-Martin Charcot and William Gowers, the “prescription” of choice was: rest, reduce stress, spa treatments and a carefree lifestyle. This prescription persisted until 2000!
The Exercise Revolution (2000 – Today)
The Exercise Revolution was sparked in 2000, when the research on exercise in animal models of PD began in full force. Believe it or not, before the year 2000, there were no community PD-specific exercise programs or PD-specialized therapists and exercise instructors or PWR!Gyms or much of anything for PWP to do! Publications and clinical trials before 2000 were rare (see Table below). In 2001, the first systematic review of the literature for exercise and physical therapy concluded “insufficient evidence for the effect of physiotherapy vs. no physiotherapy.” Fortunately, those poor reviews, along with the release of compelling publications on exercise in animal models of PD sparked a research SURGE in the number of high-quality exercise and physiotherapy trials in humans.
# Publications (PubMed)
1990 – 1999
2000 – 2022
# Clinical trials (clinicaltrials.gov)
1990 – 1999
As the evidence for the positive effects of physical therapy and exercise in humans accumulated, multiple systematic reviews and meta-analyses were completed. This led to the first international clinical practice guidelines for PT’s, OT’s, SLP’s in 2001 that are now updated every few years with new research evidence. In 2006, the medical management guidelines for PD were updated to recommend physiotherapy and exercise as an adjunctive therapy that “may be helpful to improve motor symptoms, function or disability”.
Today, the dogma about exercise/rehabilitation has reversed, instead the prescription reads: Challenge PWP to work harder than they self-select, physically and cognitively. Start early and maintain higher levels of physical activity for life. The research on exercise is now being integrated into specialized educational programs for entry level, advanced, and multidisciplinary training for healthcare professionals. In addition, Parkinson non-profits across the globe are informing PWP, families, and caregivers of the value of exercise and how to get started with PD-specialized instructors, personal trainers and rehabilitation providers.
In 2021, the Parkinson Foundation (PF) working with the American College of Sports Medicine, developed the 1st exercise guidelines for PD and defined the competencies (knowledge and skills) required for exercise professionals to implement classes and personal training programs that are consistent and effective (publication pending) for PWP. The research, and now the exercise guidelines and competencies provide the potential to elevate exercise as a clinical standard of care for PWP. To implement clinical exercise, community networks of vetted PD-specialized exercise professionals are needed that are willing to work in collaboration with allied health professionals. This will allow exercise to be integrated and updated with the rehabilitation plan of care - for life. The plan of care, proactive management and a bidirectional referral process allows for personalized exercise prescriptions to: begin at diagnosis and keep people better, exploit the disease-modifying potential of exercise and be eligible for healthcare subsidy in the future.
To work towards that integrated standard of care model, our PWR!Moves Instructor workshop curriculum uses those guidelines and competency requirements to train and certify exercise professionals to design and lead PD-specific functional exercise for PWP that is effective and safe and collaborative with rehabilitation. Our PWR!Moves Therapist workshop curriculum advocates for this integrated model and challenges rehabilitation professionals to build their local bi-directional exercise referral networks!
Question #2 What limiting factors or knowledge gaps have interfered with or held back exercise research, implementation and access?
Limiting Factors/Knowledge Gaps
- Research funding for exercise studies is not “privatized” on the scale of pharmaceuticals.
- Recognition that medication and rehabilitation/exercise are legitimate complementary symptomatic therapies that benefit motor symptoms and function and that referrals need to be initiated to rehabilitation for empowerment, education, community resources, and determination of the personalized exercise prescription as early as possible.
- New rehabilitation models are needed that value PD-specific community exercise professionals as a necessary part of the rehabilitation plan of care and advocate for bi-directional referrals and communications to keep people exercising for life.
- More PD-specialized therapists and exercise professionals are needed to increase access for PWP to quality research-informed programming that targets “functional exercise” while challenging attention focus and cognition to extend benefits to everyday movements.
- Increased utilization of PD-specialized rehabilitation professionals to optimize the plan of care and exercise prescription for life ~ every 6 months or as needed, just like they visit their physician to optimize their medications.
- Need more places to exercise and a greater variety of programming to address preferences, disease severity, and adherence.
- Healthcare subsidies are needed to offset the costs of community exercise when implemented in collaboration with rehabilitation.
Link to Panelist Discussion
European Parkinson Therapy Centre - Disease modifying therapies… hope or hype?
Moderator - Prof Simon Stott, Cure Parkinson's, Cambridge University 208 years and still no drugs/therapy that can stop our condition. What's the problem?
GUESTS- Jim Beck (Parkinson’s Foundation), Tom Foltynie (UCL), Laurie Mischley (Bastyr), Becky Farley (PWR!)
Dr. Becky Farley About the Author
If you ask her, Dr. Becky Farley will tell you that working with her first client with Parkinson’s almost 20 years ago changed her life and her career, and since then she hasn't stopped changing lives of those living with Parkinson's, in Arizona and the rest of the world. In 2010, she established the PWR!Gym in Tucson and has been offering people with Parkinson disease the PD-specific physical therapy, group exercise, and social engagement they need to get better and stay better. Globally, Dr. Farley supports PWR!’s mission of making cutting-edge PD-specific "exercise as medicine” available to the 10 million people living with PD worldwide, by training healthcare and fitness professionals in the PWR!Moves and the PWR!4Life model (and she’s trained over 6000 professionals since she started in 2010!).
When she’s home in Arizona, you’ll find Becky working on Parkinson Disease-specific exercise at the PWR!Gym as well as leading our annual exercise intensive PWR! Retreats. When she’s on the road, she’s either teaching our PWR!Moves workshops or giving talks at conferences, community organizations, and healthcare networks across the US and world.
When she isn’t working, you can find her working out, walking the dog, and gardening. To learn even more about Dr. Farley, visit our team page.