How do you tell your family that you have Parkinson’s Disease? The Son.

Hi it’s Jack. Temperature is rising and the sun is up, it’s summertime!! The Owners son is out of school on holidays, so I am getting to spend a lot more time with him than I usually would and am enjoying getting to know him a lot better. We actually have quite a lot in common, for instance we can both lie on the floor for hours on end without moving and pretend to be watching TV. We both have the ability to eat any kind of food, at any time of the day, in large quantities and regardless of what we have already consumed that day. But much more importantly we both share a sense of compassion, gentleness, fun, and most importantly an unconditional love for our family (which still includes the Cat!)

The Son has grown up with the reality of his Dad having Parkinson’s Disease, he was 18 months when the diagnosis was confirmed and that was 11 years ago, so he has never experienced a different Dad. Naturally it is not all smooth sailing and very occasionally he will get upset…What upsets him? Generally its the innocent questions he gets, “How come your Dad’s hand shakes? How come your Dad walks funny?” Asked without any malice, just curiosity or genuine concern, these usually draw a non-committal answer such as “He has a sore back”, or “He is just tired.” For adults dropping the bombshell, “He has Parkinson’s Disease” is a lot to take on board, never mind a 13-year-old boy.

How has the Son managed so far? Brilliantly, he rises to the challenge every day with bravery, sensitivity and a good sense of humour. The Owner is still his Dad and that’s all that really matters to him. He loves his Dad no matter what. Occasionally he gets frustrated when they can’t do stuff together as planned, or they can’t do some of the activities that other boys do with their Dad. But by in large he just gets on with life and doesn’t let it bother him too much.

How has the Owner managed the Father and Son relationship? Started out poorly but has improved with time. Initially the Owner had great difficulty accepting the diagnosis himself, never mind explaining it to his son. How do you explain the realities of early onset Parkinson’s Disease to your child? Explain that his health would progressively deteriorate and that there is no cure? That yes, sometimes the medicine works and sometimes not, or that the medicine he takes is not treating the disease just the symptoms. Dad’s are supposed to have all the right answers, to be wise, to set an example and to face adversity with a brave face. With Parkinson’s Disease there are no right answers, the Owner didn’t do anything to get it, there is no direct cause that can be understood  or blamed, it’s not like smoking and cancer, it is just …shit.

The Owner understands what he has to do and that the Family take their lead from him. He maintains a positive outlook and puts on a brave face on the day regardless of how he feels. He also understands that he has to lean on his family a lot more than other families would and he appreciates that support so much. How are they doing? So far so good, they have gotten this far together and I for one am backing them to go the whole way…together.

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