“What you do today can improve all your tomorrows.” Ralph Marston
“One who gains strength by overcoming obstacles possesses the only strength which can overcome adversity.” Albert Schweitzer
Introduction: In 2015, I wrote a blog post entitled “Physicians in the Constellation of Care” (click here to read it). The topic was about the importance of your healthcare team in managing your health after the diagnosis of Parkinson’s. One of my favorite Michael J. Fox quotes is, “Our challenges don’t define us, our actions do.” Moving to South Carolina has required me to start over with my healthcare team by finding a new Movement Disorder Specialist/Neurologist and Primary Care/Internal Medicine Physician. These changes got me thinking about the topic here, “Rehabilitation Therapy in Parkinson’s.”
“A wise man ought to realize that health is his most valuable possession.” Hippocrates
Rehabilitation Therapy Defined: My working definition of rehabilitation therapy is restoring someone to better health (or a more normal life) through training after or during an illness. The significant types of rehabilitation therapy are physical, occupational, and speech-language therapy. Each type of rehabilitation therapy serves a novel purpose in helping a person achieve wellness. Importantly, they share the goal of helping the patient return to a healthy and active lifestyle.
The papers listed at the end of the post were used in my background reading on rehabilitation therapy. Please look over these articles if you need any information regarding rehabilitation therapy. Also included are two publications further explaining my philosophy on managing Parkinson’s.
“Intent is what can make a man succeed when his thoughts tell him that he is defeated.” Carlos Castaneda
Life with Parkinson’s: Parkinson’s is a chronic and progressive neurodegenerative disorder, which means things (motor and non-motor symptoms) will progress over time. To counteract these changes, we spend a lot of time trying to maintain the quality of life (QoL) we want and strive to make it comparable to what it was before the diagnosis.
However, this decision rests with you. How motivated and committed are you to helping manage your disorder? Apathy is a reality of Parkinson’s; sometimes, dealing with Parkinson’s may seem impossible. But I and others are here saying trying begins within, trying equals effort, effort translates to benefit, and benefit improves QoL for someone with Parkinson’s. But there is a catch here. Many parts of rehabilitation therapy require your Neurologist or healthcare provider to get involved, which says decent lines of communication must exist between you two.
Whether you are newly diagnosed, early in the progression process, or later in the timeframe of progression, kick-starting rehabilitation therapy can possibly help slow down the disorder’s progression. In addition, rehabilitation therapy can improve your symptoms. Ultimately, the result of rehabilitation should be an enhanced QoL, which makes everyone helping you (strive to live better with Parkinson’s) happier.
“To succeed, we must first believe that we can.” Michael Korda
The Triad of Rehabilitation Therapy: Joining your healthcare team usually consists of Physical Therapy (PT), Occupational Therapy (OT), and Speech-Language Pathology (SLP). They form what I will call the triad of rehabilitation therapy. I feel blessed to have several PTs I consider to be “guardian angels.” They have helped repair the physical hurt and given me intelligent and focused advice on living with Parkinson’s.
Here is a brief overview of the roles of these healthcare professionals. The PT offers education and advice about physical activity, improving your physical self, and repairing the consequences of the disorder. They can genuinely help delay the progression of Parkinson’s. The OT can help with work-related issues, like enabling your writing skills that typically have diminished with the disorder. They are helpful in planning and framing work, home, and leisure issues in the presence of Parkinson’s. Finally, the SLP is most beneficial with the common problems in the disorder that deals with a swallowing defect, diminished voice volume, controlling saliva accumulation, and cognition issues.
According to the medical literature, rehabilitation therapy for people (person)-with-Parkinson’s (PwP) is underutilized. Likely, this is a combination of issues between the PwP, the potential additional financial burden, the assembled team of healthcare personnel, and the healthcare organization. The patient-clinician interaction must promote trust and belief in one another. They must be willing to listen and learn about your disorder. It would help if you were open to communicating your symptoms and how they alter your QoL. Over time, the hope is you can trust the medical advice. And over time, they can guide you to the rehabilitation program(s) best for your disorder.
“With the new day comes new strength and new thoughts.” Eleanor Roosevelt
Parkinson’s Progression in the Presence of Rehabilitation Therapy: Since everyone with Parkinson’s is uniquely different, it is hard to give a timeframe in years, but in general, some trends are evident. Early in the process of Parkinson’s, the motor symptoms respond well to dopaminergic therapy. As the disorder progresses, typically, non-motor symptoms begin to take precedence. Dopaminergic treatment is less likely to work when balance and cognitive issues arise. In more advanced Parkinson’s, worrisome features from dyskinesia tend to require reducing dopaminergic doses, which limits its therapeutic benefit. Quality-of-life issues are present at all stages of the disorder. It becomes a fact of life. However, involving rehabilitation therapy at each of these phases of Parkinson’s can alter their trajectory and help you maintain your health and QoL.
Rehabilitation therapy potentially begins at the diagnosis. I remember the first time I took my first dose of a dopamine agonist. My stiffness melted away, and a new life started that day of diagnosis. That first day began my education about Parkinson’s and how to live under the dark cloud surrounding my disorder. Communication between you and your healthcare team can initiate rehabilitation therapy at any point in your disorder.
Importantly, rehabilitation therapy addresses ongoing problems in the PwP such that it can occur at any stage of the disorder. Every deficit from Parkinson’s can most likely be managed and dealt with through this triad of rehabilitation. It begins with your Neurologist learning about you from your description of your motor/non-motor issues. These conversations, emails, or phone calls (or even a virtual visit) can offer you care and concern for improving these deficits.
“The treatments themselves do not ‘cure’ the condition, they simply restore the body’s self-healing ability.” Leon Chaitow
An Example of a Rehabilitation Therapy Plan: My philosophy has always followed an integrative medicine and health strategy for Parkinson’s. I am not suggesting you do what I have done because we are all different in our Parkinson’s. However, I recommend a broader viewpoint of your disorder may offer a treatment regimen that improves QoL.
Below is a chart describing the rehabilitation therapy and programs I have used (and follow) since my Parkinson’s diagnosis. It is not here to compare us or show you what you need to do to improve your QoL with Parkinson’s. No, indeed. I share it with you because these are the decisions I made in an attempt to modify my disorder’s progression and contribute to my overall QoL. I was fortunate to get good advice and had excellent lines of communication with my healthcare team; in other words, both sides listened and learned.
“Live each day; your disorder does not own you. Make every new day better; remember, you are still in charge.” Frank C. Church
The Task of Living with Parkinson’s: I look at Parkinson’s through the lens of having a finite number of dopaminergic neurons in my brain, and I must help it stay functional. In this setting, I want to provide those neurons with the best and healthiest micro-environment possible to continue producing dopamine. Staying positive, living with hope, and being persistent are just three phrases that denote a philosophy I use in my daily focus against Parkinson’s. An integrative medicine and health approach, combined with rehabilitation therapy, compose the medical foundation used to manage my Parkinson’s.
The predator named Parkinson’s will never take a break or a vacation. Thus, our approach requires constant vigilance, determined effort, and unrelenting stamina to manage our disorder. So, strive to remain healthy, be strong, and stay you.
“Age is no barrier. It’s a limitation you put on your mind.” Jackie Joyner-Kersee
References (including two of mine):
Greviskes, Lindsey E., Leslie Podlog, Ryan D. Burns, Ben Jackson, James Dimmock, Maria Newton, Leland E. Dibble, and Wanda Pillow. “Caring rehabilitation climate, the tripartite efficacy framework, and adherence to rehabilitation programs among individuals with Parkinson’s disease: a multiple mediation analysis.” Journal of Geriatric Physical Therapy 43, no. 3 (2020): E16-E24.
Garg, Divyani, and Rajinder K. Dhamija. “Rehabilitation in Parkinson’s disease: Current status and future directions.” Annals of Movement Disorders 3, no. 2 (2020): 79.
Hall, Mary-Frances E., and Frank C. Church. “Integrative medicine and health therapy for Parkinson disease.” Topics in Geriatric Rehabilitation 36, no. 3 (2020): 176-186.
Armstrong, Melissa J., and Michael S. Okun. “Diagnosis and treatment of Parkinson disease: a review.” Jama 323, no. 6 (2020): 548-560.
Rafferty, Miriam R., Ella Nettnin, Jennifer G. Goldman, and Jillian MacDonald. “Frameworks for Parkinson’s disease rehabilitation addressing when, what, and how.” Current neurology and neuroscience reports 21, no. 3 (2021): 1-10.
Church, Frank C. “Treatment options for motor and non-motor symptoms of Parkinson’s disease.” Biomolecules 11, no. 4 (2021): 612.
Riener, Robert, Jens Carsten Möller, and Daniel Zutter. “Technology-Based Neurorehabilitation in Parkinson’s Disease—A Narrative Review.” Clin. Transl. Neurosci. 2021, 5 (3), 23; (2021).
BARBOSA, Egberto Reis, João Carlos Papaterra LIMONGI, Hsin Fen CHIEN, Pedro Melo BARBOSA, and Marcela Reuter Carréra TORRES. “How I treat Parkinson’s disease.” Arq. Neuropsiquiatr. (2022).
“When something enters your life that is so big and so non-negotiable as catastrophic illness, you either go in denial for a while or ultimately you accept it and you make space for it. And in making space for it, you illuminate a lot of things that you normally don’t have room for you simply just look at the world differently.” Michael J. Fox
2 Replies to “Rehabilitation Therapy in Parkinson’s”
The only time I have gotten emotional since my diagnosis came when my Neurologist asked about the integrative specialist I also see. He said ” we need to know whose on the team because we are going to be together a long time!). I hadn’t though of PD through the lens of this continuum before.
My team is comprised of
My wife and chief encourager
Neurologist ( who has providence would have it is my next door neighbor!)
Specialist as specific issues occur
I recognize I am incredibly blessed to be in a place where I can receive these services. But, it is something we work together on every day.
Tommy, you are indeed blessed with such a support system. Your list seems almost imaginary, but the list is excellent, starting with your chief cheerleader and ending with your PT. It also speaks to your commitment to be able to work that much with these folks; good for you. All the best, Frank
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