The Myths of Wellness in Parkinson Disease

Today is World Parkinson’s day and we thought it only appropriate for this weeks blog to focus on “wellness.” We sat down with our own parkinsonsecrets.com co-host Dr. Indu Subramanian to pick her brain on wellness.

1.     Wellness is the opposite of illness

Wellness is actually defined as “The active pursuit of activities, choices and lifestyles that lead to a state of holistic health”.  So you see that wellness is actually an active not a passive thing. It is not just the absence of a disease. When a person feels like they have an active part in their health and they have control over something they do better. So wellness involves making a conscious, self-directed decision to influence the choices we make every day in our lifestyle and in our behaviors in an evolving process of achieving our full potential. Wellness is multidimensional and holistic, encompassing lifestyle, mental and spiritual well-being, and the environment. We have been very motivated to guide patients on the topic of wellness and so I am pleased to announce the launch of a new initiative called PD-Wellness. I will be launching the website PD-Wellness.org and have started a twitter handle called @PD_Wellness. Please follow this handle and stay tuned for some amazing content. We will also continue to highlight the topic of wellness in our offerings with the Wholistic series with PMDAlliance.org

2. Wellness in Parkinson Disease only involves

motor symptoms like tremor and stiffness and

slowness.

By defining Parkinson’s as a “movement disorder” we have done a disservice to the complexity of the disease. The non-motor aspects are hugely impactful and in fact can affect quality of life more than motor aspects. Most people living with Parkinson’s (PWP) have issues that affect their mental health as well. The World Health Organization has defined health as follows: ” health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity”. During the pandemic and beyond we need to care and support PWP with their mental health issues. PWP need to realize that mental health can have a tremendous impact on their physical health as well. Seeking help for mental health issues is important and has a tremendous impact on wellness. Depression, anxiety, and apathy are all very common in PWP and have been tremendously impacted in the setting of the COVID pandemic.

3. The Current Medical Paradigm includes the

Wellness Paradigm.

As you see from this graphic, the current medical paradigm focuses on curing or removing an illness. It is largely reactive to an episodic issue to correct a problem that happens to a patient. Once the problem is handled the patient goes back to their usual lifestyle until the next problem happens. The medical system is largely separate from the patient and the patient has to approach the health care practitioner with the problem to get care. It is all very compartmentalized with the sense that the patient is relatively passive and the responsibility is in the hands of the medical practitioner to provide the cure or care to the patient.

The Wellness paradigm is much more active on the patient’s part. The patient takes responsibility for their own health and integrates this responsibility on a day to day basis to change their lifestyle. This approach is preventative to maintain and proactively improve health. There is a holistic approach taking into account many aspects of the patient’s life and their support system- who they encounter on a day-to-day basis and the community in which they live. Hence, the whole paradigm is much more integrated and continuous rather than being compartmentalized and episodic. There needs to be a paradigm shift towards more of a Wellness Paradigm in Parkinson Disease.

4.  Wellness is the same as wellbeing.

Wellness is not the same as wellbeing. Wellness is an active pursuit whereas wellbeing is the perception of a state of being. While wellness takes into account mental and emotional states it also has a tremendous physical focus. Unfortunately there has been tremendous marketing and branding creating a huge wellness economy. There has hence been some pushback on the perceived pricetag and consumerism of wellness. At its core wellness is an important thing to define, understand and support in Parkinson Disease. Certainly wellbeing, happiness, fulfillment and satisfaction are all important to understand, develop scales for and strive for in PWP as well but are different that wellness.

5.  Wellness is the same for all people no matter

where they live or what culture they are from.

Wellness has a tremendous cultural context. It is important to recognize these contexts when we are counselling patients on their wellness. I was excited to find this graphic from the First Nations describing their concept of wellness that so beautifully includes the land and other “Nations” or tribes. It is a wonderful illustration of how connected people are and how we are all on this earth together. At their core many of these wellness models include mental, physical, spiritual and emotional contributions. These models all include a social and societal context that has been undervalued by the current medical paradigm. Promoting social connection has become a passion of mine and these models with the patient in the middle and all of the social support around them are so vital for PWP.

6.  Making lifestyle changes are too complicated and

insurmountable.

We have written many blogs and recorded many videos in the last year to help guide PWP on lifestyle changes and tp keep them motivated. Start with small achievable goals and keep re-evaluating how you are doing with an external coach or friend or physical therapist. Find friends to keep you motivated and to make it fun. Maybe even scheduling a walk for 5-10 minutes with a neighbor in nature is a place to start. Here are the general areas that are important in wellness: Sleep, Diet, Exercise, Social Connection and the Mind-body practices. Figuring out what brings you meaning in life and trying to focus on this goal can also be very helpful. For many PWP, they find tremendous purpose and meaning around advocacy and activism in Ending Parkinson Disease. Read the Ending PD book and sign up to become an avenger. We salute our PWP and their amazing caregivers. Your voices and improving your quality of life is what drives us to do better every day.

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/ #Livingwith Parkinson’s #EndingPD #Parkinsonsecrets #LessonsFromTheBedside

He also serves as the Medical Advisor 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.