It has been over 2 months since the diagnosis and I still can’t believe it. It is surreal. What makes it scary is the unknown. What will the end look like? How will I make money when I can’t speak?
Let’s go back to when it started…. In June of 2020, I noticed I wasn’t getting words out – that wasn’t normal for me. I asked my dentist buddy if it had anything to do with my teeth or mouth. He said no, you need to get that checked. Like most guys, it took me a couple month to schedule the doctor’s appointment. On August 25th, I met with my primary doctor. He prescribed speech therapy along with a brain MRI. When the brain MRI came back clear, my speech pathologist recommended to my primary that I see my ENT doctor (I had sinus surgery a couple of years prior). When the ENT doctor couldn’t find anything that was concerning. My primary doctor was stumped and he referred to neurology at Sanford. They ordered another brain MRI. When that one came back clear, they tested me for everything under the sun – multiple sclerosis, Lyme disease, everything! My neurologist has been doing this since 1976, and when he was stumped, I was concerned. Based on my speech pathologist notes, my neurologist was referring me to Mayo for ALS testing. I begged and begged to have the ALS testing done at Sanford, but Sanford preferred I do it at Mayo. My original appointment at Mayo was scheduled for August 17th, but I called every day for a cancellation and was able to get in June 21st!
We went to Rochester on Sunday night because we had a 7:30 am Monday consult. On Monday morning, we met with a neurologist at Mayo, he ran me through a battery of test and didn’t think I had ALS, but still decided to run the ALS tests during that week. He said he’d like to get me in front of one of their speech pathologists and she had an opening at 9:30 Monday morning! She ran me through a series of speech exercises, similar to what I had done at Sanford, and within 40 minutes she had me diagnosed! Primary Progressive Apraxia of Speech – very rare, way less than 1 in a million. We left that appointment about 10:30, headed for an early lunch and read up on the disease. After lunch, we went to the car and just cried.
*Mayo schedule the week of June
*Work schedule – Started June 2, diagnosed June 21st
Worked out today, told the group of my condition. Going to unload pigs at 10:30 and Alyssa and Kate’s volleyball game at 3:30.