Exercise Rx: What About Apathy and Fatigue?
Recently, the Parkinson’s Foundation partnered with the American College of Sports Medicine to provide new exercise recommendations for people with Parkinson’s and certified exercise professionals. The goals of this collaboration are admirable and long overdue. They seek to:
- Ensure standards of care for exercise professionals working with people who have Parkinson’s
- Ensure exercises are safe and effective at improving the quality of life for people with Parkinson’s
- Develop competencies for exercise professionals who work with people who have Parkinson’s
As someone who lived an exercise lifestyle before my Parkinson’s diagnosis, I agree that the exercise guidelines documented as an outcome of this partnership will help improve the quality of life for people with Parkinson’s. The detailed intensities, duration, and frequencies across the four domains of exercise — aerobic, strength, flexibility, and balance — specific to people with Parkinson’s are well-defined.
However, I feel there may be elephants in the room that should be acknowledged.
I am sharing this information because I feel it is important for the reader to understand that I am no stranger to daily exercise.
In 2015, I was diagnosed with Parkinson’s at age 62. For most of my adult life, I have lived an exercise lifestyle.
In the years leading up to my diagnosis, I had a fairly aggressive exercise schedule. I danced up to three hours per week, cycled up to 80 miles per week, race walked up to 12 miles per week, weight trained three times per week, and taught several weekly spinning classes.
Now, mainly due to my Parkinson’s symptoms of extreme fatigue and apathy, I can’t adhere to the exercise guidelines as described by this partnership. If I couldn’t go on autopilot to get my butt out the door to exercise (a skill I developed through years of training), I would find it impossible to exercise.
My quality of life is deteriorating, especially since I can’t exercise with intensity anymore. Plus, in addition to feeling terrible, I am exhausted after I work out.
Exercise becomes even more daunting when a person with Parkinson’s has never previously exercised regularly.
What are the elephants?
“Apathy can be a major non-motor symptom of Parkinson’s disease. Combine it with fatigue, another major non-motor symptom, and it’s no wonder we Parkies can be seen as lazy, disinterested or uncaring by friends, family and even strangers.” — Bev Ribaudo
Apathy and fatigue can discourage a person with Parkinson’s from starting an exercise program. Apathy is defined as a lack of interest or motivation. It interferes with the effective management of Parkinson’s symptoms since apathetic people are less inclined to do things like exercise.
Parkinson’s-related fatigue can make someone feel like it is impossible to move, as if they had no energy at all. Ironically, exercise is recommended for alleviating fatigue and apathy. What a conundrum!
Another overlooked elephant
“Walking a mile in someone else’s shoes isn’t as much about the walk or the shoes; it’s to be able to think like they think, feel what they feel, and understand why they are who and where they are. Every step is about empathy.” — Toni Sorenson
Unless a person has Parkinson’s, there is no way they can comprehend how we feel. I once prided myself on my discipline and commitment to exercise. Now that I have Parkinson’s, I am overwhelmed with all the time I must put in to fight this disease. When the following are added to an intense exercise program as described in the exercise guidelines, battling Parkinson’s becomes an all-consuming, full-time job:
- Psychotherapy sessions
- Support group attendance
- Speech and swallow therapy
- Occupational therapy
- Smell training
- Handwriting practice
What still needs to be addressed?
For this undertaking to be successful, I believe the potential barriers that lead to inactivity must be addressed. In the published exercise guidelines, I did not see any acknowledgment of the exercise inhibitors for people with Parkinson’s. I believe the exercise professionals must be trained to understand how symptoms of the disease can hinder a patient’s success.
Trainers and healthcare professionals must be cognizant of the fact that some of the disease symptoms (such as apathy and fatigue) may truly challenge a person with Parkinson’s and negatively affect their ability to follow through on a regular exercise program. Their mind may be willing, but their body cannot follow through.
Additionally, due to all of the therapies that are required for the different symptoms of the disease, a person with Parkinson’s may feel inundated when attempting to start a regular exercise program. They may feel disheartened. This can potentially create undue stress, which can further exacerbate symptoms.
As my Parkinson’s progresses, I am becoming more challenged and inundated — and this is coming from someone who has never shied away from exercise in the past.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.