I was reading a post on a Parkinson’s Facebook page I belong to. It was on the subject of people making jokes about Parkinson’s.
They said, “Recently Wendy asked a question about how to handle a thoughtless comment making fun of someone with PD in her presence when she has been recently diagnosed.”
Sometimes it can be hard to know what to do when faced with this situation. It becomes especially difficult if you are the odd one out when everyone else is laughing. Not wanting to be singled out perhaps as not having a sense of humour and comments like ‘it’s only a joke’ don’t really wash, I’m afraid.
For many, I’m sure the word Parkinson’s conjures up all manner of images for people, most of which are centred on the physical aspects of the condition. I feel, from my experience that many don’t appreciate that there are also cognitive issues. For me, that will be the hardest symptom of all. When I am at work and talk about my slowed processing, or word finding difficulties or plain forgetfulness, it is often brushed off by people saying, ‘We all do that!’ Well-meaning perhaps, but the extent to which these things will happen to us, compared to the general population is significant.
I used to work with people with dementia and jokes about e.g. ‘Q – What’s the good thing about having dementia? A -You make new friends everyday’ have been going round for a long time, but certainly if you are living with a condition where even knowing your precious family members slips slowly away, it’s no joke. People also don’t seem to realise that this can be part of the Parkinson’s journey. My Mum when she became affected cognitively used to think my son Adam was my brother Phillip when he visited – this really hurt my son as he loved his Nanna, and my brother seldom visited – so laughing about forgetting who people are is no joke!
There is no way that I don’t mourn the loss of my beloved eldest son every day. However, one of the things I said to my husband about him passing away at 38 years old unexpectedly, was that I was glad he was spared the pain of watching his mother go through the same thing. I know he would have been devastated as he had always been very protective of me.
My biggest concern is that I will lose my abilities of memory and use of words. I have always been good with words and do daily word puzzles to keep my brain active. I remain – so far – pretty good at them I must say!
So, for those out there who think to make a joke about forgetfulness and dementia, or any other condition like ours, remember that this is a hidden symptom of the condition. Who knows if sitting at the same table there isn’t someone like me who has cognitive problems or a loved one they are supporting.
Parkies is no joke!
My journey with Parkinsons 