My name is Belle and I was diagnosed with ALS March 9, 2018. I was not surprised at the news because ALS has taken the life of my 2 brothers and my niece has been diagnosed with ALS two years ago. I felt a sense of relief after the diagnosis because now I could move forward with my life and take on the challenges and new experiences in this new chapter of living. I decided from that day forward I was going to continue living my life with courage and a smile so I can see what's around the next curve while trying to maintain a positive outlook even in the event of immobility. Immediately after my diagnosis I went into a phase 1 clinical study for a new drug being tested on study patients with Familial ALS carrying the SOD1 gene. It was conducted at The Montreal Neurological Institute and Hospital under the care of Dr. Angela Genge the director of the ALS clinic at the Neuro. I went to Montreal nine times in the span of eight months and received the trial drug (B11B067). It is through research and clinical trials around the world that someday there will be cure to end this fatal disease. We must prepare ourselves mentally for what we need to do from day to day. We can perform the most command task for the glory of GOD, even in challenging situations. It was important to me to find a great support group because you learn and teach each other and also become friends with fellow people with and without ALS. I found that support with the ALS Society and my team of doctors and professionals at the ALS clinic. With the amazing help and support from the ALS Society I can tell myself "the sky’s the limit" with some readjustments and some limitations in my everyday living. They also show me the true meaning of HOPE (Heart Open Please Enter) because we need people to be there for us to laugh with and to cry with. I now can live each day in what is my new normal on life’s terms. I am a wanderlust and I have a strong desire to wander and travel this beautiful world. And I now travel differently through the use of a wheelchair/walker that conserves my energy and prevents my falling. I know someday this disease will take my breath away physically but "Life is not measured by the number of breaths we take, but by the moments that take our breath away".
Good bye isn't forever, it’s see you later.