How would you feel if someone laughs at you in the street, mocking your stiff, tottering steps? Or if they accuse you of being drunk? Apparently, according to a recent survey by Parkinson’s UK reported in The Independent newspaper, 90% of Parkinson’s sufferers say that they have been harassed in some way the street while 10% claimed to have been openly laughed at.
Such figures are shocking, but, without a way of comparing them with responses from people without Parkinson, difficult to evaluate. Indeed, in many ways the bigger picture with its inevitable broad brush tends to be more clinical than the individual examples of discrimination. It is when those individual cases touch you personally that the real impact is felt.
Twice I have felt that impact acutely. First, when I was shuffling back from a meal in a restaurant where I had not had any alcohol. One of a group of young men emerging from a taxi thought it funny to tell his friends that he hoped to drink as many pints as he thought I must have downed. That is the only time so far that someone has confused my Parkinson’s with drunkenness.
The second occasion I have been laughed at occurred last week. It was late, around 8 PM, and I had to go out to buy some lemons to use in the evening meal. I was tired and my walking was poor so I had to resort to running, alternating with shuffling. I could hear two young boys behind me laughing, one running past me two or three times to look at me. Crossing the main road, I sat down on a bench to rest. The two boys crossed the road after me and looked at me as they passed, one of them mimicking my stiffness in his movement of the shoulders. What should you do in a situation like that? What should I do? Such situations make me nervous rather than angry, but I also think it is important to challenge that behaviour, to make people realise the effect they have and hopefully change in the future.
I called the two boys over and they came. I explained to them that I had Parkinson’s disease, that sometimes my walking was not easy, that I couldn’t avoid these strange stiff movements, that it wasn’t funny and the next time they should remember that. The response was, from the taller one, “I wasn’t laughing at you” and from the other “what’s Parkinson’s disease?” Then the tall one said that his grandparent had Parkinson’s and this seemed to really bring it home to them. I repeated that it wasn’t funny and that they should remember that in the future. They continued their way rather chastened but hopefully they have learned a valuable lesson.
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Sorry you had to put up with that Jeremy. I think you handled it very well.
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Thanks, Mark.
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Interesting – and I am reminded,by ‘response was, from the taller one “I wasn’t laughing at you” and from the other “what’s Parkinson’s disease?’ of something I meant to ask re ‘to tell or not to tell’ i.e. when you mention it to people, do they generally know what it is ? And in other countries, and other languages ? Is it one of those conditions that are more common in the western world ? Maybe we don’t know yet. Do most languages use the word ‘Parkinson’ in the phrase for this syndrome, or are there a few that have another way of saying it I was wondering Bye for now Take care
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Thanks for this, Michael. I think most people know Parkinson’s for the typical tremor in the hands. This is a very common symptom but it is not always present and there are some 40 different symptoms in total. In my case, when I was diagnosed I didn’t have tremor but I did have stiffness, loss of fine motor movement, low blink rate… Now, I may get a tremor when I’m tired, nervous or stressed. Hopefully, this blog and others will make people more aware of what the symptoms are and, where possible, how to begin to combat them. The earlier you are diagnosed, the better. Interesting question about the name in other languages. I’d be interested to know. A quick search found the following, for example:
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Your experience shows how important communication is in our lives, even if just one way. A great Polish philosopher priest Józef Tischner said “As long as you are talking, you don’t shoot”.
Your experience sadly shows, too, how much harm can be done to another person through mere ignorance.
My respect for your courage and wisdom.
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