Hi, I’m Dwayne Breitkreutz. Up until September 7, 2022, I was a fully operational, frontline law enforcement officer. I worked my last shift on the road that day. But to go back a little while, back in 2021, I found out that my younger brother had ALS. He passed away in March 2022. As time went on we talked and compared some notes and I found out that I had some similar issues that he had. I didn’t think anything of it because ALS can be sporadic, which is what I thought his was; I didn’t even know about the familial version of ALS. For me, the initial symptom was really bad cramps that I had been feeling for years. The next thing that happened was I was getting a club feeling in my hands in the morning when I was showering. It felt like I had a club on the end of my arm instead of a hand. I then lost dexterity in the wintertime, in 2021, and thought nothing of it because I had spent many years working on a computer and thought it was maybe a carpel tunnel. One of the ladies in our office had carpel tunnel issues and she complained about pain. I had no pain but still had some similar indicators. I was tested and told that I possibly did have carpel tunnel syndrome.
I then went to see the surgeon for carpal tunnel. At this time, he did further testing and found that some of the things didn’t match up solely related to carpal tunnel. He wanted to do further studies which happened on November 21, 2022. It was at that appointment that I saw his specialist in neurology who told me he was 90-98% certain that I had ALS, but it would take a second confirmation from an independent doctor to confirm that. That was lined up and on December 13, 2022, I went in, did about 4 hours of testing, and it was confirmed that I have familial ALS. This means that my brother and I both have it. Numerous tests were done- blood tests, and DNA tests, to find out if we had some common markers. To this date, none of the known markers have shown up in either my brother or myself, so there must be other markers out there that they are looking for. I figured that from that, there is no good news for the end. But there is good news in the fact that I can contribute to the knowledge base of the disease- ALS- Amyotrophic Lateral Sclerosis. When they start rattling that around you, you don’t hear it the first bunch of times. People know it as Lou Gehrig’s disease, that’s what I knew it as up until my brother had it.
Now I’m getting involved in testing and studies. I will be starting on some medications in the near future. One symptom my brother had was that he lost his balance and couldn’t walk. His statement was, “My nose hit the ground before my feet did”. I’m walking around. I’m not balanced well, but I’m still walking under my own steam. But I cannot breathe. This disease strikes everybody differently. It moves at a different pace. I can confirm that because since I was diagnosed, I have still maintained many of my abilities. Some fine motor skills have been lost but I am still walking around whereas my brother lost it quickly. Even though it’s the same familial disease, it is moving differently in each of us. What this disease is taking, through my participation, is a database, nationally and internationally, that can help future generations. For me, being that it’s familial, it may help my children and my grandchildren. I am willing to do anything to help obtain more knowledge about this disease.
I am getting a tremendous amount of support from the ALS Society, the ALS Clinic, both at the Kaye Clinic and Misericordia Hospital sites. There are students working with us, which is building knowledge for future generations which helps to grow our understanding of what’s happening. The support that’s coming from the ALS Society, the Kaye Clinic, and all of their staff, Alberta Health Services, and Family Community Support Services have been wonderful. The information you get is overwhelming, but if you sit down and sort it all out, it’s a great help.
Thank you.