This week, we are discussing apathy. Apathy covers a wide range of behaviors, but most of us recognize it as a lack of motivation or a loss of desire to do things that you need to do. Apathy also touches things that you used to enjoy doing and makes it hard to do those things. Apathy makes doing nothing look and feel good.
For those with Parkinson’s, dopamine deficiency and the associated brain chemistry issues contribute to apathy and seem to drive motivation to the exit door. It is essential to understand that this lack of motivation is not laziness, and it is not something to be critical of yourself for. It is a challenge of this disease and how you respond to this challenge does matter. It probably matters in more ways than you realize.
The following are associated with a general lack of motivation:
1. Hopelessness: You are overwhelmed by pain and/or suffering and are convinced that these feelings are irreversible and unending. These feelings overwhelm any sense of motivation.
2. Helplessness: You are convinced that your lack of motivation is impacted by circumstances beyond your control, and you cannot do anything about it.
3. Overwhelm: You magnify a task to a degree that makes it impossible to tackle, thus giving you an acceptable excuse to not do it.
4. Self-labeling: You label yourself as a procrastinator, so you automatically expect little of yourself and set up others to do the same.
5. Undervalue rewards: You consistently state that rewards are not worth the effort. Effort has a negative association. You are always looking for the easiest solution, requiring the least effort.
Recent research is focusing on developing and applying CBT therapeutic models to address apathy in Parkinson’s patients. Within this framework, apathy is considered a person's will (or lack thereof) to do something. This is governed by their level of motivation. Motivation is influenced, in part, by a simple cost benefit analysis. If the benefit of doing something (typically measured in joy and energy) is greater than the cost (typically measured in energy) then motivation will increase.
It is all about managing energy.
For people with Parkinson’s, this math is difficult because managing energy is challenging and unpredictable. Trying to manage energy can often lead to various behavior traps and two are common.
Two common behavior traps that are best to avoid: the overdoing and the underdoing traps.
Overdoing: The person caught in the overdoing trap does too much, becomes exhausted and their energy is drained. They increase self-criticism because they feel they should be able to do this amount of activity if not more.
Underdoing: The person caught in the underdoing trap deals with increasing and constant fatigue due to an overall lack of physical activity. This too leads to an increase in self-criticism because they feel they should be doing more. They know more activity is good for them, but they just cannot seem to make it happen.
Whether you are caught in a behavior trap or not, it is beneficial to understand how Parkinson’s impacts motivation. It is important to approach the issue with understanding and not criticism.
Three things you can do to increase positive behaviors when motivation is low:
1. Set small, manageable goals. If you are over or underdoing, set small, manageable goals to move your behavior in a positive direction. Maintain an awareness of your energy and work toward an increase in energy during specific periods during the day. Also actively manage rest. Fatigue in Parkinson’s has been described as “fatigue at a cellular level”. This is not something to “push through” but something to respond to. Manage energy and rest with the same level of attention and dedication.
2. Use mental imagery and picture positive and beneficial outcomes to the changes you are making.
3. Pay attention to distorted thoughts and rework them.
Motivation is a challenge for everyone, and for those with Parkinson’s, the playing field is different. Understanding and self-compassion provide a framework to move forward.
We look forward to seeing you all on Friday at 2:00 at Whole Foods.
We cannot change what we are not aware of, and once we are aware, we cannot help but change.
-S. Sandberg
Reference:
Plant O, Kienast A, Drew DS, Slavkova ED, Muhammed K, Kennerley H, Husain M. A Cognitive-Behavioral Model of Apathy in Parkinson's Disease. Parkinsons Dis. 2024 Aug 31;2024:2820257. doi: 10.1155/2024/2820257. PMID: 39247682; PMCID: PMC11380718.
Just going back through comments and thank you for this - I so agree that the "just do it" approach doesn't cut it! Cheers to you for "muddling through"!
Great article. I over do it. Start a project and very rarely finish it. I've got 5 crochet scarves on the go.