Participant comments

Christine
I have a condition called Spina Cerebella Ataxia Type 1. It is a hereditary, progressive disease and is currently untreatable. The onset for me started about 10 years ago with my balance and walking being affected. This disease is a neurological genetic condition attacking the cerebellum part of the brain. It affects all my coordination skills, my speech and swallowing. I will eventually end up in a wheel chair. Because the condition is hereditary, I have seen many of my family members with it, at all its varying stages. So that is me.

Nina, our wonderful and caring “LifeMoves” Facilitator, asked me to write about the course and what it had done for me. First of all, I have always taken a pro-active approach to my condition, but of course with even the most positive approach, you still suffer your lows. I was suffering one of those lows when I was told about "LifeMoves". I was so low; I did'’t really want to go. But then Nina made the effort to ring me and she was so encouraging and sensitive to my needs. I found out that I was booked into the next course which just happened to be starting the following Friday.

I arrived at the meeting and within 15 minutes, the group felt safe and sensitive. I think this environment was achieved so quickly because the people attending were all suffering some sort of neurological condition, even the facilitators. No professionals as such from the medical world were part of this group. Also the size was small, so a trust was very quickly and easily established.

All these factors along with the wisdom and sensitivity of the facilitators who worked with the group, not at the group allowed us to share openly about our needs, fears, losses or achievements. The needs of the group were quickly determined by the skilful facilitators and put into a format for the group to achieve its outcomes.

Because "LifeMoves" only have people in the group with disabilities it was so encouraging and helpful to hear and share with others who really knew and understood our struggles, our losses and our pain. We were able to share resource. We were also able to share our achievements and really know and understand what these achievements meant. We were able to help and support each other.

LifeMoves helped me get through a stage where I thought I had no hope and nowhere to go. If just one person per group got what I got from LifeMoves, then I think it should be made known and available to everyone suffering from any form of disability. Thank you to my LifeMoves group for their encouragement, listening ears, support and care.

< GO BACK