Living with my hallucinations from Parkinson’s

A patient perspective by Dr. C, Sept. 23, 2024

Oliver Sacks in his book “Awakenings” describes Parkinson’s patients as commonly getting “revved up” and unable to stop physical movements or being frozen and unable to move. I call this “Go – No Go” and relate it to the problem of dysregulation caused by dopamine depletion.

Dysregulation also affects sensory input that underlies the occurrence of hallucinations. I deal with sensory exaggeration in some form every day, which I will refer to here as “hallucinations.”

Hallucinations are perceptions of something that I know are not real when I experience them. These are different from delusions — which is when someone honestly believes something that does not exist.

A better way of describing what happens is to think of sensory input to the brain as exaggerated and the normal evaluation/moderation brain systems as dysfunctional.

The exaggerated sensory input is perceived as “real” — a hallucination. But I can stand back and see the exaggerated input for what it is, evaluate it properly, then change my response. In this way, it becomes another symptom of the disease.

Exaggerated sensory perceptions that occur with Parkinson’s can manifest in different body sensations. I quite often experience olfactory sensations, which are strong smells that are not connected to the environment.

For instance, I was recently walking with my wife and suddenly had this overpowering sensation of smelling machine oil, the kind they use on guns in the military.

I could have exclaimed, “Someone is cleaning their guns,” even though I knew that the sensory perception was not caused by a real event. Instead, I reflected to my partner how unusual it was to perceive such a smell. A false smell is an example of a hallucination.

My sensory exaggeration experiences can also be visual. I see things in the shadows and in the visual periphery, but I can’t describe them other than as a fleeting nebulous event.

I also hear things that are not there. And sometimes I have skin sensations like spiders crawling, not connected to reality, though quite often I will check — just to be sure!

To be clear, not everyone with Parkinson’s is going to experience exaggerated sensory input and need to try evaluation and reaction management. Perhaps, there may be a certain set of Parkinson’s symptoms that are associated with a higher frequency of hallucination.

Given that there is a tremor form and a non-tremor form of the disease, it may be that the non-tremor form (the kind I have) manifests more hallucinations. It  may be related to the nature of the neurological damage connected to that form of the disease.

This does not mean that dysregulation doesn’t happen with tremor Parkinson’s disease, but that it happens differently. Understanding the science of neurological structures and how Parkinson’s damages them is still growing.

When I write about managing Parkinson’s, I often state how important it is to practice mindfulness. Mindfulness starts simply with the practice of focusing attention on the body.

When getting up out of a chair, focus on getting up — nothing else. Then focus on taking that first step, feeling the ground under your foot. Now focus on the next step. I like to think of it as doing a performance and everyone is watching.

My practice of mindful attention to walking has stopped all occurrences of falling (although I still wobble when first getting up). The practice of mindful self-awareness and sustained focused attention can be applied to the problems (perceptions) of hallucinations from our exaggerated sensory input.

When practicing mindful awareness while walking, your focus is on your body. But when practicing awareness of hallucinations, your focus is on your mind and trying to evaluate what is happening before you react.

My practice of mindful attention to thoughts and perceptions has been strengthened through daily meditation.

What happened over time, as I became skilled at self-awareness, was that the effects of dysregulation became less problematic. The exaggerated sensations haven’t stopped, but I can recognize them for what they are so they stop being true hallucinations.

Finally, it is important for me to manage my life around my cycles. There are good days and bad days connected to the tri-monthly ups and downs of my dopamine cycles. There are also moments of  “off periods” every day, mostly early evening, when my symptoms flare.

The dysregulation and the exaggerated sensory input experiences (my perception of hallucinations) are always worse during the bad days and the off periods. It means I must be especially mindful of these cycles and change the demands I place upon myself.

In other words, to deal more effectively with my hallucinations, I need more rest, more patience, and more meditation.

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