Thinking of Parkinson’s Disease as a Brain Injury

My clinical training is in helping people recover from brain injury. After receiving my Parkinson’s disease (PD) diagnosis and reading that scientists believe the disease is linked to the destruction of dopamine-producing neurons, I began thinking of Parkinson’s as a brain injury.

While working with brain injury patients, I’d identify which damaged brain parts were amenable to recovery and how we could work around more damaged brain areas. It was always a team effort involving both the clinical team and the patient. Since 2014, I have been applying this brain rehabilitation view to my own struggles with Parkinson’s.

To design a brain rehabilitation plan for my PD, I needed a map to identify the brain areas where I was to apply this rehabilitation effort. It took me six years to draw, largely because I don’t fit neatly into the classic PD patient criteria. I presented this new map as the spectrum stage theory of Parkinson’s disease.

The spectrum stage theory allows me to construct a mental map of my PD, which reveals brain rehabilitation paths. For me, the two most useful components of my mental map are the existence of a second dopamine center — the insular cortex — and my ability to act in a conscious way that influences the insular cortex. These two ideas reframed my perceptions of Parkinson’s disease. Turning these two ideas into daily mindfulness practice further confirmed my belief in their significance.

The insular cortex is located right behind the frontal lobe of the brain. If you put on headphones that cover the ears, then the part of your brain on the front side of the headphones would be your frontal lobe. A large amount of our PD brain is connected to this damaged dopamine-producing area. Because of all of the frontal lobe connections, there are many workaround options for dealing with the damage. I have advocated not only for mindfulness but also conductor/exercise training, which is a symbiosis of mindfulness and long body movements.

Damage to the insular cortex accounts for many of the nonmotor symptoms experienced by PD patients, including me. I like to think of the insular cortex as the “felt self” filter. The felt self is the emotional content and homeostasis monitoring we bring to every experience and every memory of experience, and it is evaluated by how we feel about ourselves in the context of that experience.

Psychologists say we have a “stream of affect” that constantly runs in the background. It only pokes up above the filter of the insular cortex when the emotional signals are loud enough to draw attention. The problem with PD is that the filter is broken, and the stream of affect becomes a daily experience, leading to a change in the felt self.

One of the unanswered questions about Parkinson’s disease is why depression and anxiety develop in PD patients who never had a severe history of either. There must be something within the PD brain that contributes to the onset of these conditions. The spectrum stage theory provides a partial answer. Damage to the insular cortex causes a breakdown in the ability to filter emotional input, resulting in exaggerated signals coming into the brain, including exaggerated pain. But research suggests that the brain can be trained to strengthen the damaged filter.

I have surges of exaggerated emotion and high levels of pain every day. I believe the surges are due to insular cortex damage. I also believe that with daily exercise and meditation practice, these surges can be manageable. This is important because it may be a way to decrease the frequency of depression, anxiety, and levels of pain associated with Parkinson’s disease. I think the surges have a quality that is different than usual environmentally stimulated emotions.

If we can teach people to understand the surges and not be overwhelmed by feelings of depression and anxiety, then they can feel more empowered and able to see the disease from a fresh perspective. This then provides intrinsic motivation for continuing brain rehabilitation and building a new neural network to compensate for the PD brain damage.

In his book “Think Again: The Power of Knowing What You Don’t Know,” organizational psychologist Adam Grant writes, “Intelligence is traditionally viewed as the ability to think and learn. Yet in a turbulent world, there’s another set of cognitive skills that might matter more: the ability to rethink and unlearn.”

I believe PD patients can use this skill in their own brain rehabilitation, reducing the impact of emotions and pain, and resulting in an improved quality of life. It is based on good science, and it works for me.

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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.