This is Barbara Durban-Wilson’ story.
In 2016, I was an active mother, wife, daughter and full-time college instructor. I enjoyed kayaking, cross country skiing and travelling. I didn’t have time for ALS (Amyotrophic Lateral Sclerosis) to enter my life. I ignored persistent hand weakness, finally making an appointment with my doctor.
Although Google had warned me that this was probably ALS; receiving this diagnosis was like being thrown into a pit of a mental health crisis. I had taken my health for granted. It was a rough time, but I was fortunate to have support from family and friends, they held me up when I couldn’t do it myself.
My husband was and continues to be my rock through this journey. Together we did the hardest part—telling our children that I had this incurable disease with no adequate treatment was devastating. I felt like I had failed as a mother because I couldn’t do the most basic thing — keep living. I kept up a brave face in front of my children, not wanting them to see how scared I was.
As time passed, I slowly came to terms with my new reality. I didn’t want to waste my precious time agonizing over something I couldn’t change. I wanted to enjoy the time I had left with the people I loved; my strategy is to pour love into my family, enough to last a lifetime.
My ALS started in the little finger of my left hand then travelled to my right hand. My arms then weakened, then my legs and now my core strength. I depend on a wheelchair for mobility and cannot use my hands or arms. If my nose is itchy, or a mosquito lands on me, I can do nothing. It is a relentless disease that never sleeps. When I lay in bed at night, I feel it destroying my nervous system bit by bit.
When diagnosed with ALS, doctors cannot tell you how long your journey might be. Will I have a short time or a long time to live? I had to let go of my hopes and plans of being present at my children’s weddings, of meeting my grandchildren. I don’t take anything for granted and now take great pleasure in the little things.
When first diagnosed, I didn’t know if I’d survive to see my children graduate high school, but I did. I continue to be an active part of their lives, supporting and guiding them as they navigate adulthood and pursue their post-secondary education.
In 2017, with no trial or medication options available to me, I became hopeful when I learned I could import Edaravone medication from Japan. I jumped through all the hurdles to import this medication. My husband and daughter were trained to give me these IV infusions in our home. My daughter has since trained my care team to do these infusions. My ALS diagnosis has influenced her to pursue a degree in nursing. I believe this early exposure to Edaravone has made a difference to my longevity and I’m so pleased it’s now available in Canada and paid for by the B.C. Government.
ALS is not incurable, it is underfunded. The ALS Society of British Columbia is working towards creating a research centre at UBC which would allow B.C. residents to participate in clinical trials within their province. This is called Project Hope. Despite losing the use of my hands and arms, I have become an accomplished mouth painter after a friend suggested we try it. I thought it was funny because I was not a painter, but it’s become a great outlet for my creativity.
We’ve since turned my paintings into note cards and donate the proceeds to the ALS Society of BC, raising more than $5,000 thus far. Painting makes me feel productive and helping the ALS Society is rewarding. I had never met anyone with ALS.When I learned of an ALS support group, I was curious. When attending meetings, I heard stories similar to mine and realized we all face similar hurdles.
The ALS Society of BC provides me with much needed equipment and eases the financial burden on my family. To raise funds for the society, we’ve held virtual events in my hometown and a friend has hand crafted quilts to be raffled off. It really does take a village to care for someone with ALS and to come together to raise awareness and funding to seek a cure.