How many times have you been asked by a doctor; "On a scale of 1 - 10, how bad is the pain?" Unfortunately I've been asked this question too many times to count. I realise a doctor needs some indication, a clue as to what he/she is dealing with, but I wonder how helpful this unreliable approach really is.
As a Parkinson's patient, I am addressing the issue of "Who is taking care of the caregiver?" If you are a caregiver, I am speaking directly to you, for looking after yourself is vitally important if you wish to continue taking care of a loved one with Parkinson's or other serious long term illness.
Children can be terribly cruel, attacking verbally and even physically, making life pure hell. Parents may take little notice of stories their child relays, hoping it will blow over in time and that it's better to let a child battle their own fights. But sometimes intervention is necessary and a child cannot cope or manage the situation alone.
A man sat down at the next table and smiled at me. I smiled back at the stranger, and found he then waved his walking stick in the air at me, and pointed at my crutches perched beside my chair. I smiled again and nodded as if to say, I understood we both need help walking. Before I could avert my gaze, he got up and moved towards my table.
In my previous article I was remiss in mentioning that my husband was screened and thankfully found to be clear of the Gaucher gene, therefore our daughter is a normal healthy young woman who will never suffer from Gaucher disease. Genetic counselling and testing is recommended for families who may be carriers of the Gaucher gene.
A controversial and thought provoking question was posed to me and I've since given it a great deal of thought. The question was: "As a disabled person suffering an incurable disease, is it a responsible decision to bring children into this world, knowing their lives will no doubt be affected by your disability?"
Sharing much in common with a fellow Parkinson's sufferer, who has turned into a good friend, referred to our lives as "living in the slow lane", and this line encapsulated the situation precisely. Everything seems to have slowed down; I eat slower, drink slower, and move slower. I think if I move any slower, I'd be going backwards.
Insomnia, being one of Parkinson's common symptoms, I found hours during the middle of the night were perfect for writing; in peace and quiet, uninterrupted by phones or distracted by family. I would sit at the kitchen table writing from my very soul, and found it therapeutic expressing my feelings and seeing them in print. I believe writing helped me come to terms with my diagnosis.