My Goal

On Saturday I went to my first ALS Support Group. It was not easy. The people in the group ranged from newly diagnosed with limited symptoms to people at the end stage of this awful disease. There were those who would talk, those with limited speech, and those with no speech at all. There were those who could walk, those like me with a cane or wheelchair, and those who were unable to move at all.

At first I was frightened, facing the fear of what was to be, facing the reality of the outcome of my condition. Then as people began to interact I was able more and more to see the humanity behind the disease. I saw unspeaking faces with eyes lit up in excitement and humour. I began to hear mumbling voices make jokes and tell stories. I began to find myself leaving the fear behind and discovering commonality and comparison.

My current state is in the midst of this group. There are those much worse off and those much better off. Once again I am average, in the middle. The average duration around the table was about three years. Add the year or so that each of us experienced before diagnosis and it would appear I am about a year behind the average member of the group, assuming you can say anything is average about an ALS patient.

One thing I discovered is that the ALS Society in Alberta is a leader across the country in supporting ALS patients and in raising money for ALS research. As on person put it, "If you are going to get ALS, Calgary is the place to get it." I've experienced this myself; the support I have received both from the ALS Society of Alberta and from the medical team here in Calgary has been terrific.

This did not happen by accident, nor was it based on government funding. The success here in Alberta is completely based on the work of a dedicated team, raising money and raising awareness. This group raises money on a constant basis, as do all volunteer societies like this one. Their main fundraiser every year is Betty's Run for ALS. It is a 5 KM walk/run like the Terry Fox Run only on a much smaller scale.

The 2012 Betty's Run for ALS raised over $504,700 for ALS research and for supporting ALS victims. Since its inception, Bettys Run for ALS has raised $5 million for ALS awareness, patient services, equipment and for research to find a cause and cure for this terrible disease. The Alberta ALS Society are the folks who have stepped in to help me with my wheelchair and my power wheelchair. These are the folks who are helping me and others who suffer from this disease. Now it is my turn to help them.

This year my goal is to raise $50,000 to support Betty's Run for ALS. Rest assured I will be asking for your help, either directly or indirectly. I may not live to see a cure but I sure want to help the next person sitting in a hospital room contemplating this terrible diagnosis.

That is my goal. At least until June 10, 2013.