In 2016 I was diagnosed with a motor neuron disease called Primary Lateral Sclerosis (PLS). I had been experiencing various symptoms like stumbling, tripping, stiffness, falling, loss of balance, and changes in my speech for a while.
Needless to say, I was surprised, shocked, and totally unprepared for this diagnosis. We knew nothing about PLS, and had never even heard of it before. “What happened for this to happen to me? Where did it come from? What did I do to deserve this?” My family and friends knew something was wrong, but they were just as surprised and shocked as we were.
I have been blessed to have a family that has been able to support me and assist me to adapt to the “new” me. My friends have also been a great source of support.
I was first connected with the ALS Society of Alberta at the ALS Clinic in Calgary. The Society supports people living with ALS, PLS, Kennedy’s, and other motor neuron diseases. Support comes in many forms. They lend equipment to clients at no charge, for as long as needed, provide home visits, information and resources, fund provincial research initiatives, and host support groups for clients and caregivers.
As much as my family and friends were supporting me as best they could, there was something missing. After speaking with Client Services at the ALS Society of Alberta, I decided I would attend the support group. The in-person meetings are held in Calgary, once a month. Family members/loved ones are welcome to join in, which my husband often does.
The individuals in this group were friendly and welcoming. By the end of my first meeting I was comfortable with the group and was already looking forward to attending the next month. When Covid restrictions were enforced, our in-person gatherings ended, but the Society adapted quickly, and began hosting the meetings virtually.
What I love about this support group is that they are willing to share their lives with PLS or Kennedy’s with others. The knowledge that this group collectively holds is amazing! When a problem is presented there are always several suggestions on what to do next or what worked for them. Concerns can range from medications, exercise, travel, preventing falls, home renovations, taxes, facilities, to available support and services, and so many other topics.
Humour plays a big part of every meeting. What is life if you can’t laugh about it!? We can all relate to some degree about everyday trials and tribulations. We hold each other up when needed. We listen and we celebrate each other’s accomplishments and victories.
The benefits of the support group are many. The most important part is that we are all on a journey together with similar problems and challenges.
Thank you to the ALS Society of Alberta for this support group. It has given me new friends to move forward with and enhanced my life with PLS.