What motivates me.
It all started when I discovered that for people with Parkinson’s, movement is the nectar of life.
Oh, Right… Exercise
I met with numerous medical experts leading up to and following my diagnosis with Parkinson’s in 2017. I was poked, pricked, my balance and reflexes were tested, my gait was scrutinized, my brain was scanned, my answers to cognitive test questions were noted, but oddly, the experts I met hardly ever asked me anything about whether I was exercising or how much or what kinds of exercises I was doing.
It’s odd because the only thing that has so far been clinically proven to alleviate symptoms without side effects and potentially slow down the progression of Parkinson’s is, in fact, exercise.
Parkinson’s is incurable, at least for now, and medication only offers temporary symptomatic relief with increasing side effects and diminished potency over time.
So why has the topic of exercise been overly neglected by the Parkinson’s medical community? After all, Parkinson’s is classified as a movement disorder and yet movement (e.g., exercise) is the one thing that can dramatically help improve the quality of life of people who have been diagnosed with the disease and is generally tied to healthy living for all human beings.
What, The Visit Is Over Already?
Maybe it’s because Parkinson’s is much more than a movement disorder (paradoxically, however, the diagnosis of Parkinson’s in the United States is generally made by a neurologist who specializes in movement disorders). When you consider all the symptoms associated with Parkinson’s, quite a few of them seem entirely unrelated to movement.
Although the symptoms vary from individual to individual, they commonly include fatigue, depression, cognitive impairment, memory loss, digestive problems, mood swings, anxiety, body pains, speech difficulties, trouble swallowing, facial freezing, muscular spasms, loss of sleep, and decreased motivation, among many other things.
There’s such a broad range of symptoms that can enter into the discussion between a health professional and a patient with Parkinson’s that exercise may be lost during the brief, time bound medical visit or not get brought up at all.
Or perhaps the topic of exercise is not getting the attention it deserves due to the fact that medical visits involve meeting the patient in isolation or at the most accompanied by a care partner. There is little to no social context that would allow the health professional to get a sense of what the patient lacks or may benefit by increasing in her day-to-day social environment.
M-O-T-I-V-A-T-I-O-N
The observation and evaluation of the Parkinson’s patient is usually conducted in a sterile office devoid of social cues, making it difficult to properly diagnose the one symptom that is arguably most critical for the patient to remain as healthy as possible.
That symptom is motivation.
If a person has trouble with motivation, they will find everything challenging from picking up the phone and calling their friends to taking their medication, paying attention to diet and regularly exercising. As we all know, if we are unmotivated, we grow despondent, listless, passive and we readily yield to the effects of whatever ails us.
Motivation is the linchpin of wellness.
If the one thing that can help you the most with your Parkinson’s is movement and you do not engage in it much or at all due to a lack of motivation, also provoked by the disease, then where does that leave you?
Motivation involves complex chemical reactions and interactions in the body and brain. If you suffer from Parkinson’s, your ability to find and manufacture what you need for motivation is impaired, which presents a dilemma: how can you harness the motivation to stay motivated to get moving and keep moving?
Social Movement
One answer lies in the power that social networks can have on influencing our motivation to exercise. When we see and interact with other people who are similarly situated doing exercises to promote their health, it helps us trigger and maintain the motivation to exercise for ourselves and possibly join others to exercise as a social group.
That’s where “social movement” plays a role. Participating in social networks that encourage you to stay fit through movement and mitigate your Parkinson’s symptoms will help motivate you to adopt a healthy mindset and healthy habits. Not only that, it may generate a virtuous biological feedback loop, whereby motivation spurs movement and movement fuels motivation.
Science backs this up and we all know it to be empirically true that a key factor in motivation is one’s social influences and social environment. You tend to do or not do what others around you are or are not doing, to put it simply.
The more that we see others challenging themselves to keep moving, the more likely we are to challenge ourselves to keep moving.
Fight On!
Speaking from my own experience, when I first walked into a boxing class for people diagnosed with Parkinson’s a few weeks after my 2017 diagnosis, I was so struck by the image of people who had my disease and yet were leaning into it by taking regular boxing classes that I was practically driven to tears of relief, joy, gratitude and inspiration.
It felt like I had found my new tribe and as a person newly diagnosed with Parkinson’s that experience changed my life.
To this day I owe a debt of gratitude to one of the people who was taking the class and had been diagnosed with Parkinson’s five years before me. He saw my hesitation, my desire to connect and walked up to me and welcomed me to the group of boxers with a reassuring smile.
I owe a debt to all the people in that class, including the trainers and the gym, because they set an example for me to follow and imprinted on my brain the value of social connectivity on fitness, health and movement. They also inspired me to pay it forward.
I hope that this expedition will help motivate others to participate in “social movement'' and challenge themselves to move and stay motivated to live a health-conscious life with Parkinson’s.
Warmly,
Gianmarco Masoni
