Before Internet, e-mails, mobile phones, the technology we enjoy today, and now take for granted, it was far harder to find the latest information, meet with others in the same situation and impossible to correspond with fellow sufferers half way round the world. If there was a support group located near to one's home, then it was a stroke of luck.
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...
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.
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.
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.
Patients who suffer any chronic, degenerative condition, should be seen on a regular basis by the same doctor, thus ensuring an on-going picture whereby the best care can be given. I think it must be incredibly difficult to continually show compassion towards a patient, whilst for self preservation keep a certain distance not allowing emotions to engulf and cloud the issue.
Sadly many spouses or partners faced suddenly with the realisation that their loved one has been diagnosed with Parkinson's, bolt for the door. Unfortunately statistics show that women are more likely to stick around due to our maternal nurturing instincts. Sorry guys, no disrespect meant to the male population, this is simply fact.
When someone has an appendicitis or breaks their leg, family and friends immediately rally around, visiting them in hospital, laden with chocolates, flowers and cards wishing the person a speedy recovery. When one is suffering from mental health problems, receiving visitors or gifts is a very different story.
Parkinson's can affect anyone - it's not fussy, and doesn't discriminate, no matter whether you're old or young. I was diagnosed with Parkinson's at age 44, which at the time, I thought was very young. However since then I have met many other sufferers, some of whom have been diagnosed shockingly at a much younger age.