This is part 2 of an interview with Dr. Becky Farley, Physical Therapist, Researcher, and Founder Parkinson Wellness Recovery®, an Arizona based non-for profit designed to translate cutting edge research on exercise and brain change into real world health care paradigms TODAY for individuals living with Parkinson disease
In Part 1 of my interview with Dr. Farley, we discussed exercise that directly addresses some of the motor symptoms of Parkinson’s, and her research which led to the development of the LSVT® BIG program. As we continue the interview, we will focus on the other essential type of practice for PwP (Persons with Parkinson’s disease), which is skill training.
Skills Training for Optimizing Brain Change for Persons with Parkinson’s
Mary: Previously in our interview, you stated that while all Persons with Parkinson’s benefit from balance and coordination and strength – fitness goals are not enough to tap into their full potential, and that when it comes to optimizing brain change for PwP, it’s important to train skills that are most compromised because of Parkinson’s disease. Could you elaborate on that?
Dr. Farley: Sure, for example, dopamine depletion occurs first in the circuits of the brain that control habitual and automated skills. So guess what? You need to train habitual movements so that you restore that automation! Yes, a use it or lose it approach to PD specific skill training. The specificity of your skilled practice is important for triggering brain changes in those aberrant pathways. That is why we created PWR!Moves as they are the building blocks of function, and each skill has been shown to deteriorate in PD and lead to the loss of mobility and function. We start with the basic skills, and progress the motor and cognitive difficulty of training to rebuild or replicate everyday complex situations. And, it is FUN.
It’s important to know that positive brain change requires MORE than exercise! It’s also about reducing stress, optimizing nutrition, and being optimally medicated. It’s about dealing with the nonmotor symptoms of PD before they become barriers to your ability to exercise and do the things you love, and these can include things such as: stress, injury, sleep disorders, and illnesses, which have all been shown to negate the benefits of exercise.
Sound difficult? That is why we are advocating for new healthcare paradigms and testing out its’ feasibility in Tucson, AZ at our PWR1Gym. Just like you should see your physician every 6-months to optimize your medication, you need to see your PD-specialized physical therapist every 6-months to optimize your Exercise4BrainChange® prescription! They will determine your baseline fitness and functional levels, set goals, reassess, provide intermittent bouts of personalized PD-specific skilled training, and coordinate your plan of care with community exercise programs for life! Physical therapists can also help you identify and address stress, nutrition, and barriers to exercise and make referrals or consult with other healthcare professionals. It’s important that PwP ask for a PD-specialized therapist, ask them what type of continuing education they have taken. (A PWR!Moves Certified Therapists or PWR!Moves Certified Instructor in your area can be located by checking the PWR! Professional directory to (www.pwr4life.org).
Mary: I love that you put the “fun” in FUNctional exercise, because I am a strong believer that none of us stays with anything for too long if we don’t perceive that we are getting benefit and/or that isn’t a little fun. (see my previous blog post: Parkinson’s patients need deliberate practice and deliberate play).
Dr. Farley: Finding ways to tap into the emotional circuits is critical for producing long-term change in behavior for everyone – but, especially, for PwP! The loss of dopamine interferes with the emotional circuits involved in motivation and self-efficacy (the belief you can get better and do more than you think you can). As a result, feelings of anxiety, apathy and depression predominate and PwP can develop negative thoughts that can actually contribute to negative brain changes that can make symptoms worse, and may even speed the disease progression.
Therefore, PwP need external sources of dopamine to overcome negative thoughts and beliefs created by those aberrant emotional circuits that can negate the benefits of exercise and further reduce participation in life.
One great way to do that is to exercise or participate in group activities that provide a lot of reward-based feedback (i.e., great job, that is your best, do it again, you CAN do it)! PwP need a LOT of empowerment, reinforcement, and acceptance to counteract the cycle of negativity or stigma. Therapists and exercise professionals will challenge individuals to access their full physical potential and then empower them by helping them recognize how meaningful / salient that “better movement” makes them look and feel. Positive reinforcement also comes from interacting with peers in an environment that is safe and accepting.
Mary: What are PWR!Moves®, and how does that approach differ from LSVT BIG® or other types of physical therapy?
Dr. Farley: The PWR!Moves were motivated by my understanding of the pathophysiology of PD, the theoretical foundation for the re-training of habitual behaviors (i.e., function, ADL), the evidence for neuroplasticity in animal and human models of PD, and the literature on motor control and motor learning. I was not satisfied with a singular focus on amplitude (as in LSVT BIG) as the only tool I had in my toolbox to help PwP. I felt like therapists need to be able to provide interventions that address all the symptoms of PD across all stages of the disease. So now the training of amplitude is just one component of our functional training.
PWR!Moves represent the EVOLUTION of amplitude-focused whole body exercise from a specific repetitive protocol (LSVT BIG) to a curriculum with a singular focus on the retraining of everyday movements while applying techniques to address multiple symptoms across disease severity. In other words, while staying focused on functional skill training, therapists can use their clinical reasoning to progress the physical or cognitive difficulty using different techniques shown to enhance learning to create personalize programs for people with different symptom distribution and interests, and access to exercise. So ideally you need a personalized exercise prescription. That is what we are training therapists to do in our PWR!Moves Certification Workshops.
The PWR!Moves provide a NEW singular focus on the building blocks of function. We call them the Basic 4 PWR!Moves: PWR! Up, PWR! Rock, PWR! Twist, PWR! Step. Each PWR!Move targets a motor control skill that deteriorates in PD due to the loss of dopamine and interferes with everyday movement (i.e., antigravity extension, weight shifting, axial mobility, transitional movement). For example, PWR! Up requires the skill of activating antigravity extensors of the whole body. Without strong anti-gravity extension, flexors muscle activation dominates, posture and range of motion worsens, and transition like turning, rolling, and getting on/off the floor become inefficient.
PWR!Moves is not one approach, it is a curriculum. The curriculum allows PWR!Moves Certified Therapists to use clinical reasoning to build a comprehensive personalized multi-symptom plan of care and to apply learning principles to progress the motor and cognitive challenge of functional training for all stages of disease severity. The training of amplitude is one tool for addressing bradykinesia, but other evidenced-based or evidenced informed approaches are also integrated to address other symptoms (i.e., rigidity, coordination, cognition). In addition, community exercise instructors can also be trained and certified to integrate these building blocks of functional skill-training with PD-specific learning-principled practice to extend the benefits gained in therapy and to provide complementary benefits related to moving and adapting to complex environments and developing social connections.
Mary: This past spring, I had the opportunity to present a lecture for participants in the Parkinson Wellness Recovery (PWR!) Retreat held in Tucson. What do participants do during their weeklong stay, and is it only for people with PD, or can their care partners also participate?
Dr. Farley: The PWR! Retreat is an annual event we have done for 8 years. It was designed to give people an opportunity participate in the type of Exercse4BrainChange® programming that we feel offers the most potential to help people get better and stay better; and the most hope for slowing disease progression. It is life-changing every year for our staff and volunteers, and for individuals with Parkinson’s disease, it will change how they live with and experience PD for a lifetime. It involves 4 hours of exercise everyday starting at 6:30 AM with pole walking, followed by breakfast, 2 more hours of PD-specific exercise classes, hot topic speakers and mindfulness-based activities in the afternoons, and opportunities for socializing, networking or just having fun playing games, dancing, and more in the evenings!
Mary: You and I first corresponded, when you requested some of the Hi-VOLT® voice-on-light bracelets for use in your gym. How do you incorporate their use in exercise?
Dr. Farley: Since our goal is to develop a comprehensive approach to exercise for PwP we include exercises for voice, hands, breath, and eyes into our exercise program. Parkinson disease affects the entire motor system! Not just walking or writing. So you need to ACTIVATE the entire motor system. We call these exercises “Boosts” because they add more physical effort and more cognitive engagement when you add them to whole body movements or exercises. So, for an example of a Voice Boost, we would have people practicing weight shifting (PWR! Rock) side to side in sitting or standing while they were reaching for targets. We would then ask them to add their voice, by counting, or calling out the direction, or the color of the target they are reaching for. The goal would be that they speak loud, with intent so that the Hi-VOLT lights up! So now they are adding physical effort across their motor system (trunk, lets, arm, eyes, hands and VOICE) and they are MORE cognitively engaged having to pay attention to several tasks at once! More like REAL life! This is the type of complex skill training that drives those dopamine circuits! And if you don’t practice integrating high effort for bigger and faster movements with speaking or reaching – you won’t get better at it during real life!
People get better at what they practice – so the more they can practice real everyday situations and conditions the better their everyday mobility and communication and function will be!
What About People with More Advanced Parkinson’s disease?
Mary: Anyone reading through your website can see that you are passionate about creating an Exercise Revolution for people with PD. Sometimes people think they are too old to begin or benefit from exercise. Can people who are older or with more advanced Parkinson’s disease still benefit from your approach?
Dr. Farley: Definitely, in fact people with more advanced PD may actually experience more significant changes in function that are also more meaningful to the quality of their life! But it may take longer and you can’t ever let them stop! It may also depend upon the number of barriers: level of cognitive and emotional impairment, number and severity of co-morbidities related to inactivity, medication tolerance and side effects. And, it will depend upon the resources they have for accessing intensive ongoing, or intermittent bouts of therapy with integrated group classes that can reinforce therapy goals in their community.
There are now a couple of studies on advanced PD and intensive multidisciplinary rehabilitation approaches that incorporate aerobics and functional skill training like PWR!Moves. We have a case study on a person that has been coming to our gym for over 5 years. He lives in a skill nursing facility, and was not eligible for group classes when he started, but afer 1 year he met the criteria and can now walk on a treadmill with a harness for 30’ with short breaks, get on/off the floor with a chair, and complete a 6 minute walk test! He is now walking with a walker at his facility and getting occupational therapy for dressing and toileting and socialization goals! He continues to come to the PWR!Gym with a mix of therapy and group exercise 4-5 days/week according to his current goals. He continues to reach goals and improve and he is an integral member in his group class!
Mary: I hope that readers meeting Dr. Becky Farley through this interview have been inspired and encouraged and have gained a better understanding of the true PWR of exercise, skills training, and group practice as perhaps the best dopamine replacement for persons living with Parkinson’s disease.
If you would like to learn more about PWR! or PWR!Gym services, as well as the educational programs developed by Dr. Farley for therapists and fitness professionals, or if you would like to find a PWR!Moves Certified Therapist or group class near you, or learn more about the upcoming PWR! Retreat (registration opens November 1) please visit the Parkinson Wellness Recovery website: https://www.pwr4life.org/
My MissionTo enlist individuals in their treatment, and help them express their personality & spirit through voice. To educate and empower.Mary Spremulli, MA, CCC-SLP FiTOUR® Group Exercise Instructor * Voice Aerobics® A Whole Body Approach to Voice Practice
Voice Aerobics the heART and Science of Voice Practice