ALS Advocacy

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 symptoms for six months. My family moved to Calgary in 2012 for my husband’s job, but returned to BC after my diagnosis so that we could be closer to family. I began attending the ALS Clinic at GF Strong once I moved back and was so surprised by the outdated and depressing facility. Calgary’s clinic is located in a brand new hospital with beautiful views and modern equipment. Such a contrast to the facility in Vancouver. I could not believe that an ALS clinic would not have a respiratory therapist on site; so ridiculous when breathing is one of the hallmarks of the disease. In Calgary, not only is there a respiratory therapist at the clinic, but all of the testing is done there as well. I currently have to go to two different locations to see a respiratory therapist and to get testing done. This is not only inconvenient, but with the mobility issues associated with ALS it can be near impossible.

My symptoms began with weakness in my right hand and have progressed over the four years to include no use of my hands and arms. I am unable to walk, speak or swallow and am therefore fed through a g-tube. I use a bi-pap machine a few hours a day to support my breathing. I communicate and type entirely through a tablet controlled by a sensor that sticks to my glasses. I move my head to hover over the letter I want. As you can well imagine, a letter like this one would take me hours and hours to type. In addition to my family, I have four part time caregivers who help me in all aspects of my life – bathing, dressing, brushing my teeth, feeding, transferring, etc.

I realized at my first ALS clinic appointment that I wouldn’t be given any hope or ideas on how to possibly slow my progression of the disease. I went to the clinic for a year before deciding it was too depressing to just list off things that I could no longer do, and so I quit going. Sadly, I had to hear about exercises to help with facial muscles and speech through a SLP in the USA, as well as the use of voice banking to record your voice. I did not get any information on these things at the clinic here and by the time I researched myself it was too late, my voice was not intelligible enough to bank. I occasionally see the clinic’s OT and PT; they are awesome and even help me a lot through email. I have done a lot of research in the years I have been living with the disease and I have spent a lot of money on testing, supplements, alternative therapies and traveling to Seattle and California for treatment and some hope.

I never anticipated having my life cut short. I always took for granted that I would see my kids graduate from high school and university, get married and have kids of their own. I believed that I would see out my career to the end and then happily retire as a volunteering, yoga loving, babysitting grandma. Then ALS happened, and unlike being diagnosed with cancer or heart disease, there is no discussing treatment options, you are simply left to get your affairs in order and wait to die. It’s infuriating, even more so with the COVID pandemic going on. ALS patients are constantly told that there is no money in the budget for research and yet our government has unlimited money in the coffers for the coronavirus. In the USA, the FDA won’t fast track the NurOwn stem cell treatment for ALS (after already being in trials for ten years), even though it has proven effective, because they claim it may not be safe, and yet they have just approved fast track status for a COVID-19 stem cell trial under compassionate use. I would like to know where the compassion is for ALS patients and their families. ALS truly is the forgotten disease.

Sadly, we got a response that was extremely unfavourable. It was written by someone in Client Relations and Corporate Issues. We didn’t even get someone from the Ministry of Health to reply. It was a five paragraph letter that basically said nothing, except that the government is already providing adequate ALS care and that they understand that ALS presents challenges. Seriously?  A broken leg presents challenges, ALS is a game changer.

We are continuing our fight, and have joined a Canada wide group, ALS Action Canada. I am grateful to the friends and family who read my letter prior to me submitting it and who have offered to help. I would appreciate it if anyone willing to further our advocacy efforts would let me know. It will take more than just those of us with ALS to bring about meaningful change. 🙂

Until next time…

Leanne xo