Patient Experience

A Poet on Parkinson’s Disease

Russell Teagarden, DMH, is an Editor of the Literature Arts and Medicine Database.
He has held faculty appointments at several pharmacy schools and has served on deans’ advisory councils.
He publishes and speaks frequently on topics including clinical research, pharmacy, health policy, ethics, education, and the humanities.

A Poet Explains the Delicate Balance of Dopamine in Parkinson’s Disease

Dopamine and the drugs that act like dopamine have been used to treat Parkinson’s disease symptoms for many decades. They are effective, but they also require close management because the doses need to be high enough to ameliorate the motor problems of the disease, like tremors, slow movements, and rigidity, but not so high as to cause psychiatric problems like hallucinations, paranoia, and dementia. It’s a delicate balance and not always achieved.

But, what does this balance between the movement problems of Parkinson’s disease and the psychiatric side effects of dopamine look like as an illness experience? Can a poetic explication add anything to a traditional biomedical description? Michael O’Siadhail’s sonnets about wife’s (Bríd’s) Parkinson’s disease experience suggest they most certainly can, especially when juxtaposed with a typical biomedical description of the balance needed in dopamine use.

For this purpose, consider an article from the September / October, 2012 issue of Progress in Neurology and Psychiatry that provides the description of this balance starting with a scenario where a person with Parkinson’s disease presents psychotic symptoms from possibly too much dopamine, and suggests the following course of action:

…dopamine agonists should be reduced in dose or stopped, followed by a period of observation. However, improvement in psychotic symptoms may be accompanied by a deterioration in motor function, which may necessitate an increase in levodopa medication. The aim is to achieve an optimal balance between the treatment of motor and psychotic symptoms.

This biomedical explanation conveys the illness experience related to the balance in broad clinical terms (e.g., “motor function,” “psychotic symptoms”). The explanation is good as far as it goes for being succinct and efficient. But, it leaves room to elaborate on how these clinical terms play out day after day for people with Parkinson’s disease and for those who are in their intimate spheres.

O’Siadhail elaborates on this scenario in One Crimson Thread, a collection of sonnets he wrote about the last two years of his Bríd’s experience with Parkinson’s disease. Two particular sonnets cover the consequences when the balance sought between psychotic manifestations and movement problems is not achieved, and when it cannot be achieved. In the first of the two sonnets, O’Siadhail describes the terrorizing psychiatric effects of too much dopamine bathing the neurons in Bríd’s brain, the frustrating suspicions that her doctors don’t realize it’s the dopamine causing the problems, and the overwhelming relief he feels when Bríd’s psychosis relents.

Dementia? But you’re so sound of mind?
I dare to think the doctors got it wrong;
That dopamine and mimic drugs combined
Misled their diagnosis all along.
Those months confused, ignoring my concern,
For no good reason you could cut up rough;
I never thought then that you might return –
My God how can I give you thanks enough?
We never come to time, it comes to us.
O moment when the mango kisses lime!
Our every moment now a moment plus
And this I’m telling you is double time
But even wishes wished our life outdares,
This resurrection way beyond my prayers

The second sonnet describes the consequences Bríd suffers as a result of pulling back on dopamine. Her movement problems reassert themselves, but she is free of the dopamine effect that had ravaged her mind. This sonnet makes clear that the balance sought between a clear mind and free movement is not always achievable, and that a tradeoff is forced when it is not. O’Siadhail prefers a “still” Bríd to a confused Bríd; we don’t know from this sonnet how Bríd feels about this trade off.

I seem to celebrate on your account,
Today so rigid under my caress.
I kneel to kiss you now but no amount
Of love or care can lessen your distress.
Clear-mindedness but no more dopamine,
So you’re chair-bound, can barely move alone;
An unoiled body’s messaging machine
Shows all the drugs had blurred is now full-blown.
At least this deal allows the mind to mesh
And yet I know that you must pay the price;
Your Mr P. will have his pound of flesh
And this trade-off means such a sacrifice.
What can I do to settle suffering’s bill
Except to say, my Bríd, I hold you still?

The sonnets add to our understanding of the consequences of Parkinson’s disease treatments have on people when they are not in balance– dopamine doses in this case. The pharmacological explanations make the balance seem simple in conceptual terms. The clinical explanations make the balance seem achievable enough. The poetic explanation, however, renders in exquisite fashion the actual experience of this balance when it cannot be achieved, and when as a result, people living this experience must make trade offs among only unfavorable choices. As such, these sonnets also show how the arts can be a useful and important source of knowledge about how illness affects people in their daily lives that are generally not available in any expanded sense from biomedical sources.

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