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20th of August 2019

Taming the pink elephant

Neurologist: “Good morning! How are you now? Have you been troubled by pink elephants lately?”

Patient: “Pink elephants, doctor?”

Neurologist: “Yes, certainly, pink elephants. You know, the things that bother you or your partner, that you really don’t like to talk about and that you’re ashamed of?”

Patient: “Uhmmm, well, that’s not nothing you are asking me… If I were to talk about the things I am ashamed of, they would suddenly become very real and inescapable, wouldn’t they?”

Neurologist: “Yes, that’s the whole point. And of course we can pretend that there is no pink elephant in the room, but …. if we both know there are things that bother you and we don’t look it in the  eyes, the elephant will only grow bigger and bigger. In fact, it will grow so big that it will completely determine how much space there will be left for you instead of the other way around.”

Patient: “Hmmmm, OK, doctor. You speak in riddles, but I think I know what you are getting at and in the meantime you have made it completely impossible for me not to think about that pink elephant anymore.”

The patient looks obliquely at her partner who nods encouragingly.

Patient: “So … Well, here it is… I’m embarrassed that by the time my medication wears off, I may suffer from a panic attack. Especially when unexpected things happen. It seems as if I freeze and derail at moments like that.”

Neurologist:  “That sounds particularly frustrating! At least I can tell you that you are not the only one and that there is nothing to be ashamed of.”

Patient: “I really appreciate you being so kind to me, but I still feel that I am the only one with these kinds of complaints. So there must be something that I am doing wrong. Most of my Parkinson’s colleagues mainly struggle with motor symptoms such as stiffness and tremor.”

Neurologist: “Appearances are deceptive. In fact, I know that there are loads pink elephants present in all sorts of patients’ living rooms who would like nothing more than to break free. It’s common in Parkinson’s that a combination of the medicines you take and changes in your brain may lead to various types of pink elephants, such as panic attacks, hallucinations – where you actually do see the pink elephant in the room – and impulse control disorders such as excessive gambling or shopping.”

Patient: “Really?”

Neurologist: “Certainly. So if there is something that you are doing wrong, it is not that you get a panic attack, but that you somehow think that you have to prevent it all by yourself. You could really use some help with that. And even though we do not yet know how to tame most pink elephants, we can give some options a try, and  – if you agree – that is exactly what we are going to do.”

Patient: “Great. I am very curious about the options.”

Taming my own pink elephant

Of course, the above conversation did not take place exactly like that. Yet it is based on my own true story. The metaphor is based on the presentation below (in Dutch, sorry English audience) by Professor Dr. Odile van den Heuvel. She argues that patients should take their pink elephants with them to the treatment room (1). In this case she addresses impulse control disorders, but she also refers to other neuropsychiatric symptoms in Parkinson’s disease.

There is a lot of embarrassment among people who suffer from it, but perhaps just as much among practitioners who have to ask about it every time.  And also with the people around them who have to deal with it. Children, partners and other family members who find it very difficult to deal with these behaviors. The more we learn to give the pink elephant in the room a name, the easier it becomes to also take the pink elephant to the doctor’s office and discuss it with the practitioner there | Professor dr. Odile van den Heuvel talking about impulse controle disorders (in Dutch) in Parkinson’s disease (1)

Recently I brought my own pink elephant with the name “Panic attack” to the treatment room. I appear to be very sensitive to the fluctuations in dopamine levels in my brain and by the time my medication levodopa – a dopamine precursor – wears off I can get a panic attack.

My neurologist came up with a nice step-by-step approach and the first step – ensuring fewer fluctuations – already yields so much improvement that step 2 is not yet necessary.

To keep the dopamine content in my brain more constant, my neurologist has – in addition to the levodopa that I am taking – prescribed pramipexole in a so-called extended release formulation. Extended release means that a little bit of the active substance is released continuously instead of all the meds at once. Pramipexole is a so-called dopamine agonist. A dopamine agonist is a substance that stimulates the dopamine receptors. Normally dopamine does that all by itself, but if you have a dopamine deficiency – which you have if you suffer from Parkinson’s disease – you can swallow a substance that stimulates the dopamine receptor without being dopamine. The illustration below shows very schematically where a dopamine agonist intervenes.

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The hardest thing … is figuring out what’s Parkinson’s, what’s the meds, what’s nothing, neither of the two. What’s really hard is that some of the Parkinson’s features, especially the nonmotor things, are part of Parkinson’s but then exacerbated by the meds… | Movement disorder specialist (3)

What I really appreciate is that my neurologist admits that there is much we do not know yet about taming the pink elephants in Parkinson’s and that the balancing act requires close cooperation. For now I am very happy that my pink elephant has been reduced to cute, manageable proportions. And when the time comes, I will not hesitate to pick up my drawing pencil again and try to portray the suspect pink elephant as aptly as possible in a composition drawing. In all shapes that will undoubtedly come to pass. 

Sparks

Sources

(1) van den Heuvel, O. (2019, 14 aug). Impulscontrolestoornissen bij de ziekte van Parkinson. ParkinsonNEXT. https://youtu.be/wlDG1j2jssU

(2) Weintraub D, Koester J, Potenza M, Siderowf A, Stacy M, Voon V, et al. Impulse control disorders in Parkinson disease: a cross-sectional study of 3090 patients. Arch Neurol. (2010) 67:589–95. doi: 10.1001/archneurol.2010.65 (Open Access)

(3) Schwartz, R., Trivedi, R., Gray, C., Lorenz, K. A., & Zulman, D. (2019). Neurologist Strategies for Optimizing the Parkinson’s Disease Clinical Encounter. Journal of Geriatric Psychiatry and Neurology, 089198871984550. doi:10.1177/0891988719845509 (Closed Access)

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