I have been getting a lot of messages asking where I have been, and if I have declined too much to type anymore, so I thought  it was time for an update. I can’t believe it has been almost a year since my last post. Definitely a lengthy hiatus! Here in BC, we had a slow start to summer, but now that it has gotten warmer, I have been enjoying getting outside, and I’m still typing.  : ) Physically, I am still doing fairly well and, praise God, my breathing has remained stable for the past three years. It is in my opinion, a miracle. My breathing declined rapidly in the second year and ..read more

Anxiety is an emotion characterized by feelings of tension, worried thoughts and physical changes like increased blood pressure. People with anxiety disorders usually have recurring intrusive thoughts or concerns. They may avoid certain situations out of worry. Anxiety is a very common disorder, affecting about 20% of the Canadian population according to a 2020 study. Prior to ALS I didn’t think too much about anxiety; it didn’t affect me. Sure, I got nervous about some things or worried about others, but it was never something that took over. Having ALS has made anxiety a real issue for me ..read more

My dad has always been one of my favourite people. For as long as I can remember he has had this magnetic personality; people have always been drawn to him. When I was growing up my dad was very busy with work and, at times, could not be there for school or sporting events. Even at his busiest he always had time for me and always made me feel loved and special. In grade one I made him a hedgehog pen/pencil holder made out of dough for Father’s Day. I can’t even explain how excited I was to give it to him. I thought it would be the perfect addition to his work space. My dad took it to work th ..read more

I am sick of beautiful people dying constantly from the horrible disease that is ALS. I wish I could say that this type of message is rare but it’s not. In fact, people with ALS are among the highest users of MAiD (Medical Assistance in Dying). Imagine the sense of hopelessness one must feel to decide to end their life. ALS is constantly referred to as rare. When you are a part of the community it definitely doesn’t seem rare. At least twice a week I hear the news of another person losing their battle with ALS. When you are not directly impacted these are merely numbers, but when you are, the ..read more

I have had people wondering how I have made out with the aftereffects of the Botox. I had the injections on November 27 and so it’s now been five months. I had been told that the effects would subside after three months. Just a quick recap. I got Botox injections in my legs to help alleviate the extreme stiffness. Within a week I was experiencing weakness in my neck, as well as more difficulty swallowing, shortness of breath and difficulty managing secretions. At its peak about a month in, I could not hold my head up without support, my legs had gotten so weak I could no longer stand to transf ..read more

Last weekend I went for an eye exam as I have been having some issues with sensitivity and because it’s been three years since my last visit. I went back to the optometrist, Dr. Maye Doldolea, I had found when we moved from Calgary. When I saw her last, I was still able to speak, walk and use my hands, all things I can no longer do. From the get go the staff were super accommodating, they allowed Cory in with me and moved around multiple machines so I could use them while sitting in my wheelchair. Believe me, not all places are so accommodating. My appointment ended up being over an hour and I ..read more

I hear this often, and it’s not usually in a positive context. As a person living with several disabilities, I have been given a unique perspective on the subject. I am happy to report that my experiences have been extremely positive with today’s youth. Last year, our family took a trip to Northern BC to visit with Cory’s mom and some other family members. We had a Thanksgiving dinner I would have loved to partake in, but I still sat at the table with my tablet so I could be a part of the conversation. My niece’s boyfriend, whom I had never met, arrived last, and surprise, surprise the only op ..read more

I have had quite a few people ask me my thoughts on the Covid-19 situation and if I am scared by it. I won’t debate the merits of wearing masks, whether kids should be going back to school or whether the case numbers are accurate, as all of these have been discussed to death everywhere. I do want to share a few thoughts on the extreme reactions and the blame game occurring because of fear. I listen to a lot of talk radio and I have been shocked by the stories of animosity towards our neighbours in Washington and Alberta. One twitter user commented that our Covid cases have come from “Southern ..read more

June was ALS Awareness month in Canada and a group of us living with ALS in BC sent a collective letter with our own individual stories to the provincial government’s health minister and our respective MLAs.  I have posted my letter here so you get a sense of what we are working towards.   I am a 46 year old wife and mom to two teenagers. I grew up in Langley and now live there with my family. I taught elementary school for about 12 years and due to ALS was forced into early retirement at the age of 43. I was diagnosed in December 2016 by the ALS Clinic in Calgary after having sympto ..read more

I have been asked a few times recently what are some things that I miss the most. I try not to dwell on such things because, as you can imagine, it can be quite depressing. On the other hand, it gives me things to hope for when the day comes that a cure for ALS is a reality. When contemplating the question it occurred to me that I miss way too many things to list. I will focus on one of my greatest losses…my mornings. I used to be a morning person; I loved so many things about it.  Now people comment “you used to be such a morning person”. I was….and then ALS happened. Before ALS I would ..read more