Leading up to our dad’s diagnoses we noticed whatever neurodegenerative disorder he had was progressing rapidly. From June 2020 to May 2021, Louis went through a lot of changes within his body; these included his ability to speak, and his ability to swallow which eventually led to drastic weight loss. In May 2021, Louis made the decision to receive a peg tube to give him the nutrients he needed.

The muscles that were responsible for breathing were becoming compromised. In early 2021, he was introduced to the BIPAP machine. The Bilevel Positive Airway Pressure is a type of ventilator that helps with breathing by pushing air into the lungs opening them up. When it became apparent that he was having a difficult time breathing, on his own, he was urged to use the BIPAP as often as possible. He struggled getting comfortable with it. The lack of use of the machine made it nearly impossible for his lungs to filter out the carbon dioxide from his body causing some cognitive and behavioural changes. He was introduced to oxygen in July of 2021 (this can be dangerous for ALS patients due to their lungs not filtering properly).

With his continued struggle with the BIPAP and the added oxygen he eventually went into respiratory failure on July 9 of 2021. We thought that was it, we thought that was the day that we would lose him, but thankfully he woke up the next day in the hospital. We were blessed with another 2 months with him.

We can’t attest to what it’s like to watch someone go through limb onset because our dad never lost his mobility; however, in his final days he did become too weak to walk and hold himself up. Losing our dad was something we thought we had been preparing for since his diagnosis. When we lost him we found out that we were nowhere near prepared nor would we ever have been. He was the heart and soul of our family; he was the best man we had ever known. We will miss him dearly until we meet again.