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December 17, 2019 is the day our world was turned upside down with Jerry's diagnosis of ALS (Lou Gehrig's Disease). Many have asked what symptoms he was having that led him to see a doctor. With his earliest symptoms we didn't think much of them or attributed them to other things. It was sometime early last summer that I noticed his posture had changed. He looked hunched over and I would tell him to stand up straight. I figured it was maybe all the hours spent hovering over financial statements at work, monitoring his laptop while working for the bank at night and looking down at his phone and tablet. I remember suggesting he should have it checked out thinking maybe he could do some exercises or wear a brace of some kind to help correct it. He started having lower back aches that as the day went on would radiate to his neck and shoulders. He started noticing on occasion a charlie horse type sensation in his ring and pinky fingers where they would go stiff for a few moments, and once in awhile similar sensations in his toes, abdomen and even in his jaw.
At the end of September all of us went back to Paradise Farm in Onalaska, WI to spend a weekend with my family. After we returned to Sioux Falls my mom called and asked "Is everything all right with Jerry? Has he lost weight? He didn't seem like the strong Jerry we've always known him to be and he seemed more tired than usual." I told her he may have lost a little weight, but if he had it was intentional as he had cut out eating ice cream at night. (Over the years being married to him I've known him to do that - just decide to watch what he was eating and drop 10lbs with seemingly little effort). Not concerned at this point I did mention this conversation to Jerry and suggested again he see a doctor. He didn't right away but the weight kept coming off, slowly at first but then rapidly. One morning getting dressed for work he lifted up his shirt (which he always wears untucked) and showed me how loose around his waist his pants had gotten. I was shocked. He finally called the doctor and went in to see our primary on November 25th. At that appointment his weight was 183 - down from his normal weight of 225. The doctor ordered an x-ray on his neck and some labs. She referred him to a neurologist and that appointment was set for December 30th. We celebrated Thanksgiving here with a house full of family having come to see Reagan as Clara in the Nutcracker ballet. The day after Thanksgiving the doctor called to tell him that his blood work came back showing elevated muscle enzymes and they were moving up his appointment with neurology to the next Thursday, December 5th. I went with him to this appointment. His weight at this appointment was down to 179. After examining Jerry he told us that based on the blood work, the brisk reflexes he saw and the symptoms Jerry described he didn't want to alarm us but that he was very concerned. He mentioned ALS, cancer. He said he wanted to run a multitude of tests to see what we were dealing with. An EMG, colonoscopy, CT & MRI were all scheduled for the following week and more blood work was ordered.
Now we were concerned. We told the kids only that the doctor wanted more tests done but didn't share with them the concern the doctor had shared with us. Tuesday the 10th he had his EMG. A follow up appointment with the results was set for December 20th. That night we had a basketball team pizza dinner at the high school for players and parents. Each family was asked to bring a case of Gatorade. Jerry went to lift it out of the car and when he tried to hoist it up higher to carry it he nearly doubled over so I took it and struggled carrying it into the school. It was at this point that I knew something was very, very wrong. We'd call him Pack Mule sometimes because no matter what we dropped on him he would always carry it. He was a strong guy. Thursday he had a colonoscopy. They found a couple flat polyps but those came back benign. Friday was the CT and MRI. That weekend while talking to our parish nurse she thought waiting until the 20th for results seemed much too long. She asked if I would mind if she contacted someone she knew at Avera about it and Monday Jerry was notified that the appointment had been moved up to the next day, Tuesday, December 17th at 11:00 am.
The appointment was brief. The neurologist and a med student came in and within a couple minutes delivered the diagnosis bomb as Jerry calls it, saying simply, "It's ALS. I’m sorry." He said we'd be contacted soon with an appointment at the ALS clinic here and then sent us to the lab for yet more blood work to further rule out autoimmune diseases that can mimic ALS just to be thorough as his EMG was very consistent with ALS. He told Jerry he was calling in a prescription for him to start taking immediately. We were too shocked to ask anything about it - what it was called, if there were any side effects, if it was expensive, etc. Jerry googled it later and read that in studies it was shown to slow the progression of the disease by 2-5 months. With an average life expectancy of 2-5 years upon diagnosis, 2-5 months was sobering. We went right to church that afternoon to pray with our pastors and parish nurse and ask for guidance on telling the kids. We told the kids later that afternoon and evening. Hands down the most difficult thing we've ever had to do. We cried together, we prayed together and held each other.
The timing of this - getting this diagnosis just a few days before Christmas has turned out to be one of the biggest blessings in this. We desperately needed time together to grieve and to be together with those who love us the most (our family) and the Christmas break afforded us this and more. In those early days while in the depths of our grief, the promise that is the story of Christmas, the light in the darkness, spoke to us like never before. We are not facing this alone. God is with us every step of the way.