ALS Diagnosis

Jonathan's Facebook Post Today:

Day #4

It has been 3.5 years since my ALS diagnosis. But how did it all begin?

The very first thing I noticed was an ever so slight weakening of my grip with my right hand. I probably wouldn't have even noticed that, but I was water skiing with a church youth group and I was having a slightly harder time hanging onto the rope as I was pulled behind the boat. In fact, my left hand grip almost seemed stronger, which was odd for me because I'm missing two partial fingers on that hand. When I got home, I mentioned it to Amber in passing and then thought nothing more of it.


Within the next month, I started dropping things like my car keys while trying to get them out of my pocket, or a handful of popcorn while trying to get it in my mouth - more ended up on the floor or back in the bowl than what actually made it to my mouth. I went bowling with some men from church and we all got a good laugh as I would try to bowl, and on the downward swing the ball would slip out of my hands and go backwards towards the seats. Let's just say it wasn't my best game!

Things at work became harder to do like open sterile packages, or draw up medication in syringes. Fine motor movements were becoming increasingly more difficult with each passing day. Pretty soon, I couldn't do up the buttons of a dress shirt, which created another problem because I was serving as a bishop at the time, and I would frequently go from work to the church. I either had to be creative in how I took my dress shirt off when changing into scrubs at work, or I had to run home after work to have Amber help me before heading to the church. Eventually, I had to have help all the time.

I was lucky because I was diagnosed within 4 months of those first symptoms. Most people go a year or longer without a diagnosis! ALS is hard to diagnose because of the differences in presentation and progression among individuals. I have never met another individual with ALS whose presentation or progression was identical to mine - and I have met a LOT of people living with ALS. Sometimes it starts in a hand, sometimes it starts in the legs. Sometimes it starts affecting speech and swallowing before anything else. It can start in any order, or all at the same time. It can progress slowly, or incredibly fast. However, one characteristic is the same. It is ALWAYS fatal!

If you've read this far, sorry for the long post. Hopefully you've learned a little something and become more aware of how ALS presents itself.

#ALSAwarenessMonth #ALS #HopeIsNeverLost

These are my memories of the journey to diagnosis - 

http://bearwitnessofhim.blogspot.com/2016/12/the-day-i-was-diagnosed-wife-of-als.html