The ALS Society of Alberta is proud to support those affected by PLS and Kennedy's Disease. Today, Corey Kjorsvik is helping to raise awareness about Kennedy's and how he keeps #MakingitPossible to attend support groups in both Calgary and Edmonton.
"In 2002 I was diagnosed with Kennedy’s Disease (Spinal Bulbar Muscular Atrophy) at the age of 39. It is a rare genetic neuromuscular disease that affects about 1 in 40,000 people worldwide. It is a slow wasting of the muscle mass with no cure. Going back to 1997, I was feeling signs of weakness in my arms and trouble walking long distances. A couple really bad choking fits made me realize that something was not right and that I needed to see a doctor about it. It has been misdiagnosed in the past as ALS, and I can still remember vividly the thoughts going through my head at the time I was being tested, and what my future would hold.
As my symptoms progress the ALS Society has become such a blessing to me. They have taken me under their wings and given me so much support. I have always had the love and support from my family and friends but was never able to find that outlet where I could communicate and share freely with others the same issues, symptoms, feelings that I was going through. It was while attending the ALS clinic in Calgary’s SHC for the first time that made me aware of the fact that I was being surrounded by so much support, and that I needed to stay involved.
Now as I move forward, I attend their monthly support group meetings in both Calgary and Edmonton. I look so forward to these meetings. The atmosphere is that of understanding, support, and caring, in such a positive environment. Being able to share with others my own personal knowledge and obstacles and understanding their own, I believe helps to better all of us in moving forward. The ALS Societies lending program has also been so helpful in helping me overcome the obstacles I encounter with mobility. I have now completed my second annual Betty’s Run for ALS in Calgary and am overwhelmed by the outpouring of people that attend in support of their loved ones and friends. Our team The “Kennedy’s Clan was able to raise over $1100.00 this year.
Being able to reach out and tell your story, I believe is so important in getting the word out about ALS and looking for that cure. Research I understand through the ALS Society is really progressing right now and hopefully in the process, they will stumble upon and find a cure for Kennedy’s Disease. To everyone that suffers from this terrible disease of ALS, and to those that work and volunteer tirelessly in support of the ALS Society, I say to you all that for who you are and what you do, 'you do truly make a difference in everyone’s life'"