Wheels on vacation, wearing his favorite college football team name on his cap, is, standing beside the wheels of the Union Pacific Big Boy railroad engine, several years before diagnosis of PPA/FTD.
I call him Wheels here. He spent his entire life working with wheeled vehicles – the bigger the better! Taking them apart and putting them back together. Teaching and supervising other people to take them apart and put them back together. He wasn’t particularly interested in driving them, just keep those big engines at a gentle roar.
He saved the driving for the old, old classics that he loved. A 1948 Cushman scooter that carried him and his sisters the mile and a half to school still sits in our garage ready to go. Right next to the 1929 Model A Ford that he bought for $65 when he was fourteen from his great- uncles retirement sale. One really bad winter it was the only vehicle that could get out because it was light enough to drive across the ice encrusted snow drifts without sinking in. Not only could he make everything mechanical work, he could tell you the laws of physics behind the working from the simple Model A to the complex diesel engines that powered big vehicles.
He was named for the Navy sailor who saved his dad three times. Dad returned the favor in kind. Dad and the buddy fought in 7 different battles in three different theaters of war during his 3 year stint in the Navy. He shared the the “real” stories, the one’s that veterans keep only for those who have also shared the terrors of war, with Wheels’ only when Dad’s grandchildren were at the age of enlistment.
Wheels was named for an “ordinary” hero. His family tree is full of such heroes and risk takers. The first was a baker from Hesse. There is no record of why his father came to the American colonies, but one can speculate that his sons were most likely escaping the draft into the Hessian army. There are records that leave no doubt that this young baker, son of the first immigrant, fought with the Americans in the Revolutionary War. He was with George Washington at Valley Forge with an unusually long service ending with his presence at the English surrender.
The family moved across the American landscape as the country grew, beginning businesses, building schools and churches, then moving on to new challenges. Wheels’ great grandfather was the third homesteader in the territory that now includes our Great Plains home. He writes of building his first cabin with native men watching and laughing at the long saw he was using. He became friends with them and they interacted until he moved to a less settled spot a hundred miles west. His daughter, Wheel’s grandmother, held that farm which was purchased by her son, Wheel’s dad, and is now owned jointly by his children and grandchildren, the fourth and fifth generations.
Wheels continued the family tradition of blazing trails. The one he last traveled is one that no one ever chooses. In 2019, he was diagnosed with a progressive and terminal disease that was relatively unknown in the medical community. There was, and still is, very limited information available as it affects a very small number in the scheme of things. In fact, it still takes about 3 ½ years to definitively diagnose the disease. At the time he was finally given a diagnosis, the doctor who read his brain scans said, there is no known cause, no known cure, no medication or treatment – no reason to come back. Indeed that was pretty much the consensus in everything I could find. There have been enormous strides made in the past four years. And therein lies the hope.
As regulars have no doubt noted, my longtime blog, A Pinch of Joy, has been on hiatus for the last couple of years with the exception of the weekly Linky Party. A Pinch of Joy will continue and move back to regular posts as we can. When Bytes and I would say we need to write a blog about caregiving, Wheels would acknowledge that statement positively. So yes, he did know. And he did approve, even though he could not speak, as he made it clear that Bytes and I should share our “learning curve.”
Yes, we jointly decided that we need to bring a sense of purpose to our life and experience with a rare disease. We are not the only family struggling with enormous change and an illness that drives those changes willy-nilly. Being really personal is not our intent nor our natures – we are after all, from the stoical Mid-West where you do what you gotta do and make the best of it. Bytes and I decided that we would continue to call him “Wheels” to give him some privacy with the anonymity of the name.
Our hope is that our struggles – because they were that! – will help others and eventually add to the body of knowledge about his disease. Along the way, I will share information that relates to living well while coping with a life changing diagnosis. And continue to share things that fit every stage of life. And continue to dispense A Pinch of Joy!
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