My worst nightmare is becoming a burden to my family, which I'm sure is in the back of many people's minds. No one wants to put loved ones through such difficulties and heartbreak. Why is it the people we love the most seem to be the ones who end up suffering? I am painfully aware my family, despite their smiles and good humour, encounter strains and difficulties due to my ill health.
When people ask me "How are you?" I have to think twice, not because I don't know, but often am not sure what they want to hear. Some ask out of common courtesy, simply being polite, but would rather I answer "I'm fine thank you" than hear a long account; perish the thought of hearing the truth and understanding the full picture of living with chronic disease.
Every morning as I clean my teeth, and the strange reflection of someone I once knew stares back at me with an expressionless face, I wish I had a magic mirror that would show me what I'd like to see. Unfortunately the mirror does not lie, as I look at myself I can hardly believe it's me. Our bathroom scales annoyingly also tell me the truth...
As Parkinson's (or any serious illness) progresses, it's easy to lose one's self confidence. When I was first diagnosed I immediately came across several people who had been living with Parkinson's for some years and therefore had already experienced many of the stages and symptoms that occur as the disease advances.
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.