You are not Your Illness

Taking the “fall” for Parkinson’s.

One of the most challenging aspects of doing psychology in a physical rehabilitation setting is that you are often faced with problems for which there is very little “cure”.  There are many illnesses that, unfortunately, are slow, persistent and sardonic in their deterioration of the nervous system.  The most a psychologist can perhaps hope to do, in the face of such an onslaught, is support the human spirit in its struggle not to become diminished by these illnesses.

Parkinson’s is one of these debilitating illnesses that unsuspectingly creep their way into your life.  You might begin to recognise its arrival through the beginning of a slight tremor, a slowing of movement or an increasing stiffness of your limbs.  These symptoms led to it first being noticed as the “running disturbance of the limbs”, in the 1700’s.  Eventually, in 1817, James Parkinson wrote a 66 page paper on it as the “Shaking Palsy”, in an attempt to describe what this disease does to a person’s body. Since then, we have been seeking to better understand how Parkinson’s attack on the brains dopamine system complicates people’s lives and how to prevent it.  What we have found, so far, is that although it might be possible to hold Parkinson’s back, we can’t really undo its damage.  What is becoming increasingly clear is that it has got away with the relatively inconspicuous reputation of the disease that causes the “shakes”, when it is in fact far more sinister than that.

Over time it might leave you feeling particularly insecure on your feet, especially after it has tripped you once or twice – sometimes leading to serious injuries.  Eventually it might leave you feeling quite contorted, bent over on yourself, fragile or brittle.  As it continues to make itself comfortable in your central nervous system, it will leave you to battle with an increasing difficulty with communication.  You may start to struggle with the embarrassment of slurred speech and you are likely to start avoiding things like answering the telephone.  Eventually, you may not even be able to recognise your own handwriting.  So, increasingly, you start to depend more and more on others to get the everyday business of life done – things that we usually take for granted.

However, perhaps the most devastating influence of the disease is the way it manages to convince you that you are “useless” or a “burden” to others.  I can appreciate how a ‘movement disorder’, hungry for the dopamine in your brain, needs to live up to its reputation for disrupting your ability to move, but does it have any right to undermine who you are?  Why does it need to cast doubt over your self-worth or meddle with your dignity?

This is where the true dubiousness of this illness lies – in the way you end up taking the fall for the turmoil it causes.  While Parkinson’s hides away in your body’s cockpit, the brain, messing with the controls, you end up having to take the blame for not being able to safely steer your way through life.    It is almost as if there is a loss of your “automatic pilot” (see Brain & Behaviour, Coping with Parkinson’s by Joseph Friedman).  Suddenly, things that you were able to do without even thinking require the utmost concentration.  As the Illness continues to disrupt your control centre, you might find yourself blinking less, swallowing less or needing help with activities as simple as standing up from a chair or turning yourself around.  Things that used to take you just a few minutes will now, if you have the determination to follow them through, take you so much longer.

And so, the true cruelty of this disease lies in the way it slowly hijacks the previously taken for granted aspects of your life, making it difficult for you to do many of the things that make up who you are – doing your work, enjoying your hobbies, being an active parent or grandparent, or simply getting on with the daily activity of life.

The first biggie was having to give up driving.  With it went my independence, to just pop down to the shops, to visit people, and one hundred other things including all the grocery shopping and other chores that the running a household involves.

–    Mrs B

Perhaps the real battle through all of this is not so much avoiding dependence on a walking frame but to try and stay patient with yourself.  After all, you did not invite this disease into your life.  Nothing you did or did not do could have possibly caused it.  Yet, in moments when you are struggling to get out of your chair, when the person you are talking to keeps asking you to repeat yourself, or when you have spilt tea all over yourself for the third time in a single day – it is difficult not to take the blame and feel rather foolish and self conscious, particularly in the company of others.  To make things worse, the people around you may even start to treat you differently.  People might start to treat you as if you are older than you actually are, as if you didn’t have a life before Parkinson’s or that you can no longer think for yourself.

I have also become a mixture of being invisible and a curiosity at the same time.  I have learnt that shop assistants don’t like to deal with wheelchair people – they seem to think that all of them are incapable of speaking for themselves and prefer to deal with the “pusher”.  Something I’m having trouble handling but being in a wheelchair doesn’t give you the right to be obnoxious, although I would quite like to be!

–    Mrs B

Parkinson’s might steal your stride, it will probably rob you of your balance at times, it may even take things very dear to you away, but it will probably also make you stronger.

You [Parkinson’s] remind all of us what an amazing person Mom is.  She has shown strength beyond everyone’s expectations, and we are in awe of her resilience and bravery.  Every day you continue to take something away from her, yet she keeps her chin up and continues to do as much as she can.  It would just be so easy to sit back and let you take over her whole life completely, but she resists you every step of the way.  What greater role model could a child wish for?

–    Mrs B’s daughter

Ultimately, if Parkinson’s is going to take anything make sure it takes the blame rather than your dignity!  Along this treacherous road, full of fear and uncertainty as to where this illness might lead you, my plea to all those who are braving this involuntary route in life:

Don’t take the fall for Parkinson’s.

[Special thanks to Mrs B and her family for their expert advice on writing this article]

Published by Jason Ross

Jason Ross is a Counselling Psychologist with a fervent interest in the use of LANGUAGE and TEXT. His areas of practice include: injury and illness psychology, sexual health, relationships and addiction.