top of page

Every story has a beginning.. here is mine Chapter 1

(For the month of May I will share my version, of my side, of our journey)

Diagnosing and starting to show symptoms are two completely different things in the ALS world. Most of the time, I talk about the day that forever changed our lives, November 28th, 2017, the day my dad was diagnosed, but our story starts way before…

When I start to think back on different encounters with Ton pre-diagnosis, the one that always sticks out in my mind from the start to the end was December 2016. My work at the time had its annual holiday party at an amazing restaurant, and I had only been there for 6 months, so this would be my first-holiday party, and I wanted to ensure I was there. I was also pregnant at the time and wanted to announce it to everyone at one time, so I thought this would be the perfect opportunity.

Ton drove up to watch Thor, who was just shy of two, at the time for a few hours so that I could attend the holiday party, which happened to be during lunch. He came out of his car with a huge jar of cheeseballs in hand, and I could tell something was instantly bothering him. He started stretching his legs in his pleated jeans that he ironed daily with pride, talking to me about how his legs were stiffing up, and it was starting to bother him more and more.

At this time, his complaining about some ache or pain was something as a family we were used to, he was the type of man that the ‘man-flu’ commercials were made after, but this was different.

I went to my party and came back a few hours later, and before I was at the backdoor, Ton was ready to go, keys in hand and one foot out the door. I asked him if he wanted to stay and watch a show or hang out for a little while since he and I did not get much time together, and he said he was in pain and needed to leave. The whole encounter was strange.

First, Ton would never say no to a juicy gossip trash TV session, and second, he never moved quickly EVER, so why now?

I started to feel horrible as I questioned if I did something or if Thor did something. What happened that he needed to run out the door literally?

Later that night, I facetimed him. Later that night, I got an idea of how mentally bad things were for him. Later that night, I started to see that this would be a bigger problem…


bottom of page