Defeating the 8 Myths about Parkinson’s Disease Exercise
Who is the author Becky Farley, PT, MS, PHD and what is her connection to exercise and Parkinson’s disease?
Becky Farley PhD
Dr. Becky Farley is a physical therapist (PT), neuroscientist, Parkinson exercise specialist, and the Chief Scientific Officer and Founder of Parkinson Wellness Recovery | PWR!. Dr. Farley received a PhD in Neuroscience from the University of Arizona, a MS in Physical Therapy from the University of North Carolina, and a BS in Physical Therapy from the University of Oklahoma. In 2010 she founded the nonprofit Parkinson Wellness Recovery | PWR! to translate cutting edge research on exercise and brain change into real world health care paradigms for individual living with Parkinson disease (PD).
Dr. Farley, and now other PWR! Faculty have trained over 6000 physical and occupational therapists and assistants, students and exercise professionals since 2005 in the US, CA, and now worldwide.
We sat down with Becky to pick her brain on the myths around exercise in Parkinson’s disease. We also pressed her on giving us some tips for better exercising!
1. You can wait to see a PT until you start to have symptoms that require intervention.
Getting started is the most important step. But, in our experience, it needs to begin at diagnosis with a referral from your physician to a PD-specialized physical therapist to get your exercise prescription started. We have found that PwP need validation from their physician to get started or they don’t seek healthcare at diagnosis, instead waiting until they notice a problem and it is years later! Or even worse, they sign up for a group class but eventually drop out because they don’t have a personalized plan, a coach, or goals to feel rewarded for their efforts!
2. We need to wait for more research to prove that exercise helps PD.
· There is no need to wait for a research study to prove exercise may slow, halt, or reverse disease progression…you need to get started now! NO EXCUSES! Physical therapy and exercise are ALREADY considered essential in the management of PD, complementary to pharmaceutical and surgical approaches. Therapy and exercise has been shown to reduce the amount of medications required over time, reduce your motor and nonmotor symptoms, reduce constipation, improve balance, function, sleep, mood and MORE! This position is supported by multiple reviews and meta-analyses, physical therapy guidelines, and consensus statements by the scientific community.
· But….. even if exercise does not stop disease progression, it has already been shown in animal and human studies to create positive brain changes that restore some aberrant dopamine pathways making what you do have more connected and efficient – despite there being less dopamine in your brain. And that means continuous access to exercise may put off the motor deterioration and motor symptom for longer! Despite living with PD – you CAN GET BETTER and STAY BETTER!!!
3. “Keep things simple and don’t challenge people cognitively or physically!”
· During her post-doc Becky shadowed a Movement Disorders Specialized Neurologist, Scott Sherman MD, and studied the motor control problems that underlie bradykinesia (slowness of movement) in PD to understand how they interfere with everyday movement. That experience led to an NIH funded Randomized Control Trial that established the importance of a physical and occupational therapy protocol designed to challenge bradykinesia by requiring persons with Parkinson disease (PwP) to use high effort (beyond self-perceived) for whole-body bigger and faster movements (aka: LSVT BIG).
That seems obvious, right!?
That PwP need to be challenged to do more than they think they can?
BUT, in 2000, at the time of the study, the rehabilitation and exercise dogma was “keep things simple and don’t challenge people cognitively or physically!”
Wow, turns out…they were wrong…instead high effort amplitude-focused whole-body practice IS an essential component of an exercise program for a PwP!
In fact, I feel it is the best place to start, because realizing your full motor potential to move will empower and motivate you to do more!
4. All Physical Therapy is the same and all physical therapists are the same, so as long as you are doing what the therapist tells you then you will get benefit.
· Specificity of practice is an important exercise component – but what does specificity of training look like for someone with PD? That was my quest after my post-doc, as I went on to pioneer a skill-based approach to amplitude training called PWR!Moves that can be instructed by therapists and exercise professionals alike. There are “4” type of PWR!Moves, and they can be performed in any position as an exercise, or be integrated into function, boxing, pole walking, sports, or anything you do! Each of the “4” skills have been shown in research to deteriorate and interfere with everyday movements in PwP (i.e., antigravity extension, weight shifting, axial mobility, transitional movement). The practice of these skills with a focus on high effort for bigger and faster movement will provide the “specificity” of training you need to put off the motor deterioration that occurs in PD.
5. There is no role for exercise trainers or classes in PWP. There is only a role for PT.
· Therapists and exercise professionals are now able to target similar skills necessary for function but for different goals in different settings. Therapists focus on integrating PWR!Moves into personal goals and task-based practice to improve your functional mobility in real world environments. Exercise professionals integrate PWR!Moves into fitness or personal training activities designed to improve your endurance, strength, agility and balance. Sharing a common PD-specific skill training focus across medical and community settings provides a continuum of care that not only reinforces and improves function, but it also improves the quantity of higher quality practice across all your exercise classes and activities (e.g., dance, boxing, tai chi, yoga) to sustain function!
Increased quantity of higher quality practice is important b/c you WILL get better at what you practice! The practice of good quality movement also assures you will be safer, and better able to fully participate in high intensity exercise classes and to perform all the things you love to do.
6. You can only benefit if you have a continuous physical therapist referral.
PwP need a continuum of care – one that begins in rehabilitation - cycles to PD-specific community exercise and wellness programs – and then cycles back to rehabilitation to update your plan of care. This is one of the challenges of our healthcare system today! And, it is our mission at PWR! We believe that it will take this type of medical and community integration to optimize and to perpetuate functional mobility and contribute to a possible disease-modifying effect.
· Participating in one physical therapy regimen, or one group exercise class 3 hours/week is not enough to overcome a neurodegenerative disease. While any exercise will make a difference in how you move and feel, the more work you put into it; the more benefits you will likely appreciate. We know that to overcome a neurodegenerative disease that directly impacts an individuals’ capacity for, and willingness to, fully engage in vigorous exercise will take a lifelong plan and a coach!
· Studies show that you will get better at what you practice, but if you stop, the benefit will disappear in 3-6 months. Research also shows that long-term changes (1-year or more) are possible if community exercise resources are integrated into the rehabilitation plan of care for a lifetime of rehab-community care. In addition, group classes offer complementary benefits, not always possible in 1:1 settings, which include improved social and emotional well-being, self-efficacy, motivation, and nonmotor symptoms. You need both! For LIFE!
7. I have so many non-motor symptoms of PD like apathy and depression that I cannot get motivated. Exercise is just not for me.
By Jonny Acheson
· PwP are particularly vulnerable to adopting a less physically active lifestyle (before or after diagnosis), and they may experience feelings of anxiety, apathy and depression more stress, injury, sleep disorders, and pain than their healthy age-matched peers. All of those factors have been shown to negate the benefits of exercise. So, although exercise is important, if you don’t continue to participate in activities you enjoy outside of structured exercise, or learn to deal proactively with feelings of anxiety, apathy and depression or other nonmotor symptoms like stress, pain or injuries, you may not reap all of the benefits from your hard work!
· Here are some ways to tap into “external sources of dopamine” to overcome stress, injuries, inactivity and negative thoughts or beliefs created by those aberrant emotional circuits that can negate the benefits of exercise and further reduce participation in life.
o Have a team, people you can go to for empowerment and education.
o Take full advantage of your healthcare benefits for physical, occupational, and speech therapy.
o Seek advice from your therapists as a lifelong coach who is there to re-assess and set new goals, give you feedback, help you identify the best combination of exercises for YOU, and to help you access other healthcare, community or wellness resources.
o Anytime you have a set-back, contact your therapist and get a 1:1 tune up, reset your goals to get back to your baseline ASAP. You CAN get better. Don’t assume that your new baseline is your new normal. Don’t just jump back into to group and think you will get back to your previous self. Be proactive, make it happen with an intensive bout of therapy first.
o Be around positive people that provide a lot of reward-based feedback (i.e., great job, that is your best, do it again, you CAN do it)!! Guess what kind of person I am J
o Participate in positive group activities (exercise, social, singing, self-expression, dance)
o Positive reinforcement also comes from listening to enjoyable music, participating in self-expression and creative activities, forming social connections, and interacting with peers in an environment that is safe and accepting.
o Go outside, have routines, spend time with your family or pets!
o Do something you have wanted to do! Get help planning, make it happen.
o Practice mindfulness/breathing techniques every day. Get on the floor and breathe, listen to calming music you like, try an app, practice letting go of stress and rigidity daily, for at least 5-10’. You will be surprised how even a short moment can make a difference in the rest of your day.
o Use your special skills to do something for someone else, volunteer, give back.
By Jonny Acheson
8. During the COVID pandemic, there are no resources for PT that are safe or accessible to me.
In 2012, we opened the doors to the PWR!Gym, a model neurofitness center in Tucson AZ offering physical therapy and exercise therapy in one location, implementing this concept of shared goals and homogenous multilevel group exercise classes devoted to serving only PwP with cutting edge research principles for a lifetime. That is all we do, everyday! Over the years, we have developed processes for assigning members to multilevel group exercise classes, facilitating timely and efficient communication between our physical therapists and instructors regarding a participants’ change in health status and observed concerns. These processes are needed to reduce attrition, functional decline and adverse events such as falls or injuries. We have also recognized the importance of proactive physical therapy re-evaluations and therapy bouts to address these health status changes or observed concerns early; with the intention of keeping participants in their class as long as possible or returning them to prior level of function as soon as possible.
We have started to publish our retrospective data to share what we have learned and to work with other organizations to make this type of facility and program available in more places. During the pandemic, we have been trying to re-configure our programs for the virtual environment. Soon more PwP will also have the opportunity to access the PWR!Gym programs through a Virtual PWR!Gym membership. To find out more and get on our interest list, go to this link: https://www.pwr4life.org/virtual-pwr/
· If you are interested in finding a PWR! Certified Therapist or Exercise Professional. Visit our website and search our PWR! Professional directory or call our office at 1-520-591-5346 and we can search for you.
This blog is brought to you by Michael S. Okun and Indu Subramanian.
To read more books and articles by Michael S. Okun MD check Twitter @MichaelOkun and these websites with blogs and information on his books and http://parkinsonsecrets.com/ #EndingPD #ParkinsonPACT #Parkinsonsecrets and https://www.tourettetreatment.com/
He also serves as the Medical Director for the Parkinson’s Foundation.
To see more on Dr. Indu Subramanian she does live interviews of experts in Parkinson’s for the PMD Alliance