A lot of things about living with ALS frustrate me, but probably nothing as much as being treated differently. By differently, I don't mean accommodating my obvious disabilities, like holding doors open for me, communicating via email or text rather than by calling, or coming over to my house to visit rather than going out.… Continue reading I Understand You…Really I Do!!

When I was first diagnosed, after doing a lot of research, one of the things that scared me the most was losing my ability to talk. I was frightened that I wouldn't be as close to my loved ones, particularly my kids, if I could no longer talk. It's hard to believe, but in fact… Continue reading The Conversations Continue

I always feel sad when January rolls around. I really don't like that Christmas is over and all signs of it will get packed away for another year. That being said, I do appreciate the newness that January brings. I have never been one for making strict resolutions, but instead prefer to choose some things… Continue reading New Year, New Goals

I have decided to preempt the post I was working on, to share a little Christmas musing. Nothing new, but if you can, try to slow down and experience the joy of the season. I know I know, easy for me to say, as I have others out running my errands, but seriously, I wish… Continue reading A Christmas Sentiment

I am referring to our recent federal election here in Canada, and my title definitely has nothing to do with the actual election results. Lol. Voting is something I believe to be a privilege, a privilege denied to so many, and so ALS or not, I will continue to exercise this right. I truly believe… Continue reading An Election Day Disaster…or a Gift?

It has been about six months since I last wrote about what physical changes had been occurring in my body. Many of you have been asking about my progression and I thought I would share here because I have been so bad at sending individual messages lately. In the past year I haven't noticed too… Continue reading An Update

This post has taken a long time to write, not because I didn't know what to say, but because I have been dealing with some serious sadness and thus a total lack of motivation; a definite case of the September blues. I used to love everything about September; the return to routine, the new school… Continue reading September Blues

I draw inspiration from many sources, but none so much as from my daughter. Olivia was born into this world with a lot of uncertainty and heartbreak surrounding her. She immediately struggled to breathe as her airway was being obstructed by her tongue. She was immediately whisked from the delivery room, but not before I… Continue reading My Inspiration

My "loneliness" post seemed to have resonated with many of you. The blog got close to 2000 views last month and I received a number of messages commenting on that post. People I know and those I do not, shared with me what struck them upon reading it and how it made them feel. I… Continue reading What We All Seem to Want

I hear this constantly from people, baffled that in the age of supercomputers and artificial intelligence we haven't been able to stop this beast of a disease in it's tracks. Sadly, ALS research is extremely underfunded by the government, or in Canada zero funded, and awareness is very meagre. When I was first told that… Continue reading “I can’t believe there’s no cure for ALS!”