24 May 2017 at 3:26PM
Category: Your Stories
YOU ARE NOT ON YOUR OWN JACK!
I live with a rare, very slow moving,
form of Motor Neuron Disease (MND). I had been losing some fine motor skills,
albeit very slowly, over a period of many years. I was finally diagnosed in
Although not significantly affected, I
had become interested in the condition that I was not aware of prior to
MND has no known cause or cure. After
diagnosis average life expectancy is a little over 2 years.
About 18 months after diagnosis I
joined a group of fellow MND patients for a life moves course held at Calgary
Hospital in Caulfield. There were about 10 participants in this course*.
As you could appreciate the atmosphere
in this room was not very positive.
One participant, who was recently
diagnosed, was an angry young man. He was particularly distraught at the
prospect of being denied the opportunity of seeing his nine year old daughter
In the first couple of weeks he was
emphatic that he had been exposed to few, if any, support opportunities.
Due to the understanding nature of the
course facilitators, combined with the exposure to others with similar
experiences, this man's attitude changed markedly and he became a significant
contributor to the group. In each of the last few weeks he, smilingly, would
share the details of an outing he had had with his daughter.
This great feeling was infectious in a
very positive way.
As my condition started to have a
greater effect I would often reflect on this experience. I went to a
participant reunion about 4 years ago. Since then I have completed both the
volunteer peer and facilitator's training and was a part of Sunshine &
Geelong courses (twice).
I like to think that I have now become
part of the BrainLink furniture, I very much look forward to being involved in
making someone else feel good because this makes me feel even better!