"Time To Face The Truth" Chapter 3

I want to start this week off with some background as we move into the medical part of my ALS journey.

From the time someone first begins to notice symptoms (onset), it takes an average of about nine to twelve months to be diagnosed with ALS. Unfortunately, there is not one definitive test to diagnose ALS. Doctors typically have to rule out other medical conditions before deciding it is ALS. In my case, because it was my face showing most of the initial symptoms, they wanted to rule out stroke, palsy, lime, MS or other issues. To do that, I had to go through several blood, functional, ENT and MRI tests and evaluations. MRIs alone can't directly diagnose ALS because people with the condition have normal scans but they are often used to rule out other diseases.

The average lifespan of a Patient with ALS (PALS) is 2-5 years upon onset of the first symptoms, so you can see where it is stressful to think a person could spend the entire first year seeking a diagnosis. If you ever served in the military, you know about the military medical system and how slow and frustrating it can be. If you haven’t experienced that firsthand, let me be the one to inform you.

In July, it finally came time for me to face the truth and call for an appointment, but I didn’t get scheduled until August. By then, my mouth started to droop and my speech started to slur. I could no longer kiss my wife with pursed lips, and you can’t imagine what it feels like not to be able to kiss your spouse. We laugh about it and call them “Hollywood Kisses.” You know when you watch a movie and they don’t really kiss but you can tell they’re faking it. Not being able to give her a good kiss does hurt my heart… and I was a gooooood kisser.

It was time to stop bullshitting around and man up, face the truth, and stop thinking I was too busy to take care of myself. Many of us do this and I find that service members are the worst. So, I pulled up my panties and went to the military hospital and saw my Primary Care Provider (PCM). After explaining my symptoms and that timeline to the COVID vaccine, she thought it might be something viral. She gave me some steroids, and then sent referrals to the ENT and a Speech Therapist. Yup, the steroids were to help with my tongue, but she prescribed nothing for what she thought was a virus. Three weeks later, I finally got to see the ENT and Speech Therapist. They did

some tests and could not figure out what it was, however, I did manage to get another referral to a Neurologist at one of the finest military hospitals in the area. By now it was late August, and in walks Dookie Houser, the first of four different Neurologists I would eventually see. He looked at my tongue and did some mobility tests; you know - “push your hand away, pull it back, don’t let me blah blah blah.” After about 20 minutes, he said he wanted me to get an MRI and come back. I was so relieved to get good medical help, so off I go. Two weeks later, I finally get my first MRI.

On the day of the MRI, I drove to the hospital at 430 AM. Why are all MRI so damn early in the mornings. I was a bit apprehensive, but a few years back I had one, so I thought I could do this. I got all prepared and took the walk. In my head I heard, “walking the mile, walking the green mile,” but I got on the bed, and into the MRI machine I went. I was fine the first 5 minutes, but at the 10 minute mark I was tapping out like a UFC fighter in a choke hold. I saw stars, my heart was racing, my blood pressure was

so high, and I’m sure I saw my heart coming out of my chest like a cartoon character falling in love. The operator said, “only 40 more minutes sir,” and I responded with, “I’m not doing 40 more seconds of this, get me the hell out of this tube!”. Two weeks later, back we went to see Dookie and he told me that the MRI was not good. He suggests an Open MRI with sedation. These machines look more like a giant round stapler, not a tube like the first scan. Although I told him I wanted to be knocked out for any other MRIs, the following week Laura and I drove an hour away for the open MRI. At the appointment, they gave me valium and told me we would start in 30 min after the valium kicked in. About 20 min later I was lying in the bed ready to go into the MRI and even though I could see out and move my arms and legs, 15 minutes later I tapped out. Hell the valium did not kick in until we drove home. This time they did get some images for Dookie, but not enough to see what they needed.

Now it's September, and I am nowhere closer to a diagnosis than I was before. At least Dookie finally got the picture that I need to be knocked out for any future scans. A week later, we’re off to the hospital for the third MRI. The last thing I remember was telling the MRI operator is ”if I wake up in there, I am not responsible for any damage I may cause”. When I woke up, there was Laura calling my name.

It was now October and I finally got the MRI scans completed successfully.