Fighting ALS, Fueled by Faith

One of my favorite things to do is sit outside first thing in the morning on our patio. The backyards here are generally not that large but nicely ordained. I typically wake up with more energy and love that feeling. On this morning I am reminiscing on our journey over the last six months. It’s a story of God’s faithfulness and our frantic and circuitous path toward a diagnosis.

In December of 2024 I began to notice a few things, unexpected weight loss, leg muscle cramping and a heightened sense of fatigue. I remember telling my wife that the ski trip we were going on with the family might be a wild ride based on all of this. God was faithful and I was able to fully participate and make an incredible memory. At this point I was thinking that I’m getting older and maybe not working out as much as I should, basically taking a typical man approach to it all. By January there was no ignoring all of this. I started with my primary care physician and we began looking into drug interactions and replacing drugs like the statin I was on. Not much success. All of that takes time so we find our self on Valentines Day with no progress, worsening symptoms and the realization that something bigger is going on here. It was a very emotional Valentines Day for us, and not the emotion the day is supposed to arouse! I remember on this day putting in all of my symptoms into ChatGPT and it telling me the diagnosis would be ALS. I knew from that moment on, somewhere deep in my being that this would begin my journey with this disease.

That’s when the real hunt began. All of my blood tests and scans were coming back negative, indicating I was healthy. We self referred to the rheumatologist, neurologist, cancer specialist, and spine/brain specialist. Several MRIs, Cat Scans and blood tests later we still had nothing. Because of this we started to pursue the Mayo Clinic complex care program, a program available with our insurance if you cannot find the cure. We were also working hard to get into the only neurologist in Southern Nevada that could reliably diagnose these complicated motor neuron diseases. During the week of June 23, we were off to the Mayo Clinic in Scottsdale, Arizona. Thirteen appointments later and in our last appointment we heard the dreaded diagnosis that I have ALS. Even though we pretty much knew this would be the diagnosis it was a gut punch. One week later we received a confirming diagnosis from our Southern Nevada doctor and the reality was unavoidable.

As I reflect back on those scary and confusing times I can see God with me at every appointment, with every blood draw, with every conversation with my wife and kids, guiding and guarding our hearts. I can see him working in our finances, logistics, support and helping us know He is there.

ALS is a very rare disease (about 1.5 to 2 new cases per 100,000 people per year) that is really challenging to diagnose. Our journey to diagnosis took just about six months and we thought that was a long time. The average timeframe we routinely hear to get to a diagnosis is 12-18 months. We praise God for an early diagnosis..

As I sit here on my patio as the temperatures keep rising on my FIRST RETIREMENT DAY off! I find myself being thankful for telling this part of my story but believing this will be the last backward facing post because we are wholly focused on NEXT. God has my next already figured out. I have a role to play, there is Kingdom work to do and I need to eat all of the things my lovely wife keeps feeding me! Onward!