5th of May 2019
In search for the PD drive
Taking the red pill
Last week I read the freshly arrived Dutch book ‘Mental vulnerability through Parkinson’s’ (‘Mentale Kwetsbaarheid door Parkinson‘) by Ad Nouws. Before, I also devoured his book ‘My thinking falters more often than my legs. How people experience Parkinson’s’ (‘Mijn denken stottert vaak meer dan mijn benen. Hoe mensen Parkinson beleven‘).
Both books alternately fuel feelings of powerlessness and militancy, both of which have become highly flammable ever since I was diagnosed with Parkinson’s Disease. Because the prophecy a Parkinsonian has to deal with isn’t easy:
People with Parkinson’s withdraw from public life because they are confronted with mental vulnerability. Their willpower – their ability to initiate thinking and acting – becomes unreliable and their sensitivity to pressure increases. If you get Parkinson’s, you are at risk of disappearing as a person who independently makes plans, makes decisions and implements them | Translated from the Dutch book ‘Mentale Kwetsbaarheid door Parkinson‘ by Ad Nouws.
The disappearing act
I am grateful to Ad Nouws for showing the invisible mental side of Parkinson’s. I recognize it, but I’m not ready to accept it.
When we realise that our problem is in getting started – both in our movements as well as in our thinking and feeling – then we may be able to prepare ourselves and our environment for the time when disappearing acts increase in frequency so much that it’s beginning to look like our personality has changed.
I do think Parkinsonians could use a little help in not disappearing from the world stage prematurely. I feel that the intrinsic attributes of our disease, and the way in which these are currently appreciated in our treatment, make us more passive and absent than necessary. Backed up by recent scientific literature, I want to make a plea for strengthening our ability to direct the course of our disease ourselves. Our care providers would provide us a great service if they would get us on the right track in the following three ways:
1. Make the diagnosis a serious and empowering moment
The influence of the delivery mode of the diagnosis in setting a patient’s course shouldn’t be underestimated. When I was diagnosed, I was told that I was going on a honeymoon for approximately ten years to come. So I deduced that ‘It wasn’t too bad what just hit me’ and the hidden message which echoed a distant youth was that ‘I shouldn’t complain’.
This type of onset of a career in Parkinson’s doesn’t automatically build a movement of patient advocates. On the contrary. For me, it brings to mind the parable of the frog. If a frog is suddenly put in boiling water, it will jump out, but if the frog is put in lukewarm – honeymoon – water that is heated slowly, it will fail to react until it is too late and will be boiled to death.
Many narratives suggested that the moment of diagnosis was treated as a matter of routine by the neurologist. The final jigsaw piece had been found and, in the hierarchy of neurological diseases, things could be worse. The existential challenges thrown up by a diagnosis of a progressive, degenerative, incurable disease remained unacknowledged at this moment. Underlying many narratives was a sense that participants felt misunderstood and abandoned, that the emotional impact of a Parkinson’s diagnosis remained unacknowledged and that, in the world of neurology, Parkinson’s was considered neither the ‘worst’ diagnosis nor the most ‘exciting’. (1)
People with Parkinson’s are handed over to an ever-shrinking world, slowly but surely losing sight of the center of attention where change is made. If our neurologist doesn’t see the parallel with the parable of the frog, then we are entirely left to ourselves in having the courage to think we are important enough to make noise when we are still newcomers who have only just reached the lukewarm Hoehn and Yahr Scale 1. But what else can we do but fight for our (future) self? After all, the irony is that when the water eventually and irrevocably starts to boil, we are in a far worse position to speak up for ourselves.
2. Paint the whole picture of PD
The focus of my treatment was and is mainly on the motor symptoms of the disease and the medication I take to stop my left foot from dragging and make my left hand type again: levodopa. But levodopa does nothing to alleviate my gastrointestinal symptoms, nor does it help me multitask more efficiently. But I didn’t know these and many other symptoms I have were attributable to Parkinson’s until after some serious self-study.
The invisible symptoms of PD can be wide ranging, from constipation, gastrointestinal discomfort, panic attacks, stiffness and rigidity, confusion, inability to multi task, difficulty making decisions, possible urinary issues, difficulty sleeping, poor eyesight strength, swallowing and saliva issues, foot cramping/dystonia. These are just some of the symptoms that some of us may be dealing with, but few others may be witness to. The list is extensive and variable. Even if you constantly try to educate those closest to you, you can’t always expect them to understand | Karl Robb.
I know that the “new kids on the block” are already standing in line to supplement the neurologist in the interdisciplinary treatment of Parkinson’s (2). But until that is treatment practice, it is up to our neurologists to paint a more complete picture of Parkinson’s. A picture which partly lies outside of their expertise. One in which patients feel acknowledged and with which they can work. Because it is incredibly difficult to prepare yourself for your future if you don’t know what you are up against.
Fortunately, attempts are increasingly being made to unhide the hidden face of Parkinson’s. For instance:
- The #ParkinsonIs tweets which follow from a campaign by Parkinson’s UK are very insightful in helping people understand what PD is and what impact it has on peoples’ lives
- The videos ‘A mountain at my gate‘ and ‘Seeing the whole picture of Parkinson’s‘ catch the essence of what Parkinson’s feels like very well.
- Also, scientists are increasingly stressing that it is time for a new definition of Parkinson’s: “Most of the non-motor symptoms are in fact more frequent than, for example, resting tremor and more severely restrict quality of life through the course of the disease due to the fact that their therapeutic treatment is limited.” (3)
3. Adjust the course of Parkinson’s patients early
There is something odd about a disease with loads of – initially – small inconveniences.
So what if you occasionally drop a glass, miss a corner, cut yourself while chopping an onion, don’t remember what has just been said, miss an appointment, miss a complete conversation, can’t taste your food, can’t smell your partner, don’t feel your arm, can’t type on your iPad, have stomach aches, have muscle pain and sudden cramps in your hand, feel anxious. This happens to everyone once in a while. Right? But having all of these symptoms in one body on the same day with a likelihood that’s far greater than any chance of winning the lottery is what makes it different. Lots of discomforts taken together dó add up to reach significant impact.
Understanding the omnipresent nature of the disease and being able to access tools to cope with this fact from the very start is extremely relevant. I firmly believe that a relatively large amount of time should be spent on adjusting our course right at the beginning of consciously having Parkinson’s. Why wait until you falter and fall often? A small change of our course now can have a major effect in the long term.
Before leaving the diagnostic consultation, participants’ narratives spoke to a need to feel safe at this moment of uncertainty, back in control at a moment of disempowerment and clear that there was a plan for the future. (1)
Of course, we cannot expect wonders from our neurologists and Parkinson’s nurses whom we may only see for several hours a year (4). In the end, we are mostly left to ourselves in living well with Parkinson’s. But it is precisely for this reason that – from the outset – our caregivers should be extremely serious about the implications of Parkinson’s for all aspects of daily life and give us two choices:
If you take the red pill, you open yourself to the harsh reality of a serious diagnosis. But at the same time, you are given a number of tools to relieve symptoms and possibly also to slow down neurodegeneration. You will have to take on sports, participate in an educational program, learn to understand and apply LSVT BIG, investigate your diet, receive mental support from a fellow patient, inform your loved ones and aks them to press your START button when necessary.
The red pill empowers patients to work on acceptance, find their PD drive and take an active role in managing their disease, one of the main factors which contributes to positive living with PD. (5)
If Parkinson’s – as Ad Nouws describes it – is a disease of disappearing willpower, I would like to do everything in my willpower to make myself and my loved ones the directors of this disappearing act. So that I disappear as little as possible.
In order to do so, we should first dispell the myth that Parkinson’s is benign. No neurologist should ever send someone on their honeymoon after a diagnosis ever again. On the contrary, I expect that we will not only be offered levodopa but also the possibility of taking the red pill.
Given that doctor-patient communication is perhaps the most important placebo effect in medicine (5) this act shouldn’t be taken lightly. It requires that our neurologists take our future extremely serious.
And then, for all we know, the red pill might just work miracles.
The rare pleasure of being seen for what one is, compensates for the misery of being it | Margaret Drabble
(1)‘There was no great ceremony’: patient narratives and the diagnostic encounter in the context of Parkinson’s. (Open Access)
(2) (2019) Multidisciplinary care for people with Parkinson’s disease: the new kids on the block!, Expert Review of Neurotherapeutics, 19:2, 145-157,(Closed Access)
(3) Jost, W.H. & Reichmann, H. (2019) Time for a new definition of Parkinson’s disease. J Neural Transm [Editorial]. https://doi.org/10.1007/s00702-019-01999-w (Open Access)
(4) Riggare, S., Höglund, P. J., Hvitfeldt Forsberg, H., Eftimovska, E., Svenningsson, P., & Hägglund, M. (2019). Patients are doing it for themselves: A survey on disease-specific knowledge acquisition among people with Parkinson’s disease in Sweden. Health Informatics Journal, 25(1), 91–105. https://doi.org/10.1177/1460458217704248 (Open Access)
(5) Ambrosio1, L., Portillo, M. C., Rodriguez‐Blazquez, C., Rojo, J. M., & Martinez‐Martin, P. (2019). Influencing factors when Living with Parkinson’s Disease: A cross‐sectional study. Journal of Clinical Nursing. https://doi.org/10.1111/jocn.14868 (Closed Access)
(6) McCabe, R., & Healey, P. (2018). Miscommunication in Doctor-Patient Communication. Topics in cognitive science, 10(2), 409–424. https://doi.org/10.1111/tops.12337 (Open Access)