But Seriously. In the Beginning...

In the midst of a water fight, summer 2013

In January or Febuary of 2013, I started noticing that Jon was mumbling just a bit. I thought he was being a bit lazy, and it bugged me. Over the next few months it got progressively worse and he was really slurring his speech. He had some dental work done, and it seemed reasonable that there was some mild nerve issue that would get better, so we continued to ignore it.

Finally, on Independence Day last summer a good friend, who happens to be an ER nurse, pulled me aside to ask if Jon had had a stroke. OK. Clearly it was time to look further into what was going on. To this point, Jon’s speech had been on our minds, but we weren’t worried about it.

(Perhaps I should say ‘I’ instead of ‘we.’ Jon will likely contribute his own thoughts to this blog.)

So one day Jon went to work and tried to make an appointment with the neurology clinic.  Hilarity ensued. When he told the clinic his symptoms, they insisted he go the ER IMMEDIATELY. Jon, of course, had some meetings to go to and some things to check on first. Finally the Neurology clinic called the ER, who called Jon’s boss, who called him and asked, “Do you want me to come and walk down to the ER with you, or do you want me to meet you there?” He went to the ER.

The good news is that this process fast tracked things like an MRI. The bad news was that everything looked good… a stroke really would have been preferable to the final diagnosis! :-)

The next step was an actual appointment at the neurology clinic. This is where Jon was made aware of some things that he hadn’t even realized. Muscle weakness on the left side. Muscle twitching. Muscle cramps. And, of course, the slurred speech.

The neurologist didn’t give any indication of what he thought might be going on, but google was super effective at delivering the bad news. Go ahead. Throw those symptoms in google. ALS is the first thing that pops up.

ALS. Lou Gehrig’s Disease.

Jon needed some more tests, but the blow had been delivered.

The story doesn’t end there, but that is where this blog (finally) starts. From the beginning we have felt like this story isn’t ours alone. This is a journey that we are supposed to share. With family, friends, each other, and maybe you.

I have no idea how long this blog will last, how often we’ll post, or who will contribute. But if you want to follow along, consider this your invitation. We live our lives as an open book, and this is our story.