Introducing the 2019 Edmonton Walk to End ALS Ambassador, Danny Getzlaf

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My name is Danny Getzlaf and I am honoured to be the 2019 Edmonton Walk Ambassador. I’ve always approached life with zest and excitement. I celebrate each day with my love for my wife Linda, our 6 children, my family and friends, and my great community of Morinville.

In the summer of 2017, I had experienced fatigue at work and found myself coming home to have 2 to 3 hour naps after my work day. Anyone that knows me knows that naps are not a thing I do. At first, I was worried that it was due to a heart condition or possibly diabetes, but it wasn’t. On August 23, 2017, at a routine doctor visit, I told my doctor that I recently was unable to move my right big toe. I wasn’t too concerned, but my Doctor was. He had a neurologist squeeze me in for an appointment at the Sturgeon Hospital within a week. That appointment was followed with an MRI, 2 EMG’s, and a bucket full of blood tests all within a very short period of time.  Fast forward to November 20, 2017, when at 51 years old I was diagnosed with ALS - a disease that is always fatal and has no cure. I can’t explain how I felt after receiving the devastating news. I didn’t hesitate to tell my family and friends immediately. There was a lot of “I LOVE YOU’s” and loads of hugs in the following weeks. I continued to work for three months but with regular medical appointments and depleting energy levels, I made the tough decision to go on medical leave.

I began to do a lot of traveling with my wife and camping with my children, family and friends; and focused on developing relationships with friends from the past. I quickly realized what was important in my life.

I was referred to the ALS clinic of Edmonton and had an entire team of health professionals present me with options for the possibility of slowing down the disease progression. I was excited to sign up for research like MRI studies and new or upcoming pharmaceuticals. I’m happy to announce that I was 1 of 12 ALS patients in Edmonton area to start a new drug called Edaravone (Radicava). This is the first drug that’s been released in 24 years to help ALS patients. I started my infusion treatments on January 28th, 2019. It consists of 10 days of infusions and 14 days off, on a 28 day schedule. It’s not a cure but it’s been shown to slow down progression up to 33%. With ongoing research we are hopefully getting closer to find a cure for this deadly disease and I’m proud to be a part of it!

Throughout my journey, the ALS Society of Alberta has been there for me by providing support and keeping me informed of all the medical equipment that I have access to in the future. From mobility aids like walkers, wheelchairs, porch and stair lifts to breathing and communication devices.  I am more determined now than ever, to make it known that we are in desperate need of funding and research for this deadly disease.  I am requesting that everyone join me in supporting all ALS patients by supporting the ALS Society of Alberta and you can start by committing to participate in the 2019 Edmonton ALS Walk!

The ALS Walk brings family, friends and communities together celebrating the past, present, and the future of ALS. Through the tremendous support of the ALS Clinic, the Society; and support groups I attend, I am able to “Live Each Day with Passion and Pride” in my Community.