Updated: Feb 3
(For the month of May I will share my version, of my side, of our journey)
Being diagnosed 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 being 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 as 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 make sure I was there. I was also pregnant at the time and wanted to announce it to everyone at one time and 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, a huge jar of cheeseballs in hand and I could tell instantly something was bothering him. He started stretching his legs in his pleated jeans that he ironed daily with pride, he started talking to me about how his legs were stiffing up and it was starting to bother him more and more.
I must say at this time him complaining about some sort of 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 if Thor did something? What happened that he needed to literally run out the door?
Later that night I facetimed him. Later that night I got an idea of how bad things were for him mentally. Later that night I started to see that this was going to be a bigger problem…