My Story
My Background?
Well, to date I’ve lived for over sixty years on this beautiful planet of ours. I managed to use some of that time to put myself through university, earning a bachelor’s degree in linguistics with a minor in psychology and a masters in speech/language pathology. This was followed by jobs in my chosen profession, purchasing my family’s farm and eventually moving back home to help my parents manage the farm.
This is when I started a family on my own as a single parent by choice, caring for and losing my elderly parents, and now losing my physical strength to a rare degenerative neuromuscular disorder. This last little tidbit is why I have created this website.
As a kid I was always physically active in track and field, figure skating, skiing, and fitting in as many mountain hikes as I could. I continued this way of life throughout my time at university and into my early career as a speech/language pathologist. It was while working that I started to notice things were a little off.
At that time I was the volunteer program director and instructor at the disabled skiing program at one of our local mountains in British Columbia. I was also teaching belly-dance classes and performing with my dance troupe at various venues. Although the skiing was seasonal, the dancing was year-round and I loved it. It was while teaching dance class that I noticed it was harder for me to get on the balls of my feet. Okay, weird, but whatever.
However, my stamina while skiing was lessening as well. Again, weird, but my thoughts were that I must be getting out of shape. It wasn’t until my speech started to become a bit slurred that I knew something wasn’t right. It was subtle, but because I was a speech/language pathologist, it stood out like the proverbial sore thumb.
My Diagnosis?
This is the wonderful diagnosis given to me years ago. It’s a slow but steady weakening of your voluntary muscles, affecting your oral-facial muscles (lip and eye-lid ptosis), your ability to chew and swallow, and a general weakening of your arms, hands, legs, and feet. Oh, joy.
It’s a very rare disorder, and there is little to no information about it other than you will continue to become weaker, and there is no known treatment. The one thing the specialist said was that I should keep as active as possible, because once the muscles atrophy; there is no way to get them back.
Now I am no wall flower, and I am not going to just sit here and collect dust as I deteriorate. NOT HAPPENING. That’s when thinking outside the box is my savings grace. Like the detective Hercules Poirot always said, ‘…keep those little grey cells exercised, otherwise they may grow rust’.