Sometimes progress is the worst...

Progress is usually referred to as "perfection", or a milestone on the path towards accomplishing a goal, but when someone you love has ALS- progress is actually the worst.

To help you, the reader, better understand what I mean:

Dad (and me), almost exactly four years prior to his ALS diagnosis at a Reds game versus the Twins.

Dad (and me) almost exactly two years prior to his ALS diagnosis. Dad still feels like himself and is able to attend to household tasks, cook, bake, attend family events, and run errands or go on a date with Mom.

Dad has begun to feel like something is wrong; This is eleven months before his diagnosis. He has begun to lose weight and is lethargic. The road to diagnosis has, unknowingly, begun.

Mom's last birthday- 2/8/2024. Five months to the day later, we buried Mom, and six months and five days later, Dad would be diagnosed with ALS. At this point in the road to diagnosis, he has begun to see every medical specialist he can think of, and is perpetually frustrated that they are all stymied by his symptoms.

Ten months after diagnosis. Dad is utilizing his power chair, his weight has dropped significantly, and at home, he is on oxygen almost 24/7.

Dad one year, eight months, and one week after diagnosis (and a day before getting his haircut). Sidenote: My bangs and Kentucky humidity are NOT friends.

Yes, I do frequently refer to him as Bernie Sanders when his hair gets this long!

In another life, Dad would go as Bernie Sanders for our legendary Halloween parties, sadly these days, Dad's version of partying is watching baseball in his chair with oxygen, Orion, and me.

ALS progression is not linear from patient to patient. Eric Dane announced his diagnosis, and ten months later ALS took his life. Stephen Hawking lived with ALS for 55 years. Although the progression is different for each pAL(S), the end result is always the same: being trapped in your body while still fully aware of every itch, every conversation, and every thought before losing the battle.

Progress is the enemy of every person living with ALS. Each stage of progression is one step closer to losing the battle with this horrible disease.

Four years ago Dad would get outside at every chance to garden, grow our tomatoes, and grill. He would cook, bake, clean the house, run errands, host parties, go to family get-togethers, attend sporting events, go to sporting events and performances for the children in our life, and take Mom out on dates.

Three years ago, Dad began to run out of energy before he was able to even get started on his day. He asked me to grow the tomato plants, which was a terrible idea (RIP Tomatoes). He would attend events and go to family gatherings, but his typical spark and sense of humor were dimming. He was losing weight even though he was eating three meals a day, generally homemade by Mom or me as cooking and/or baking was rapidly becoming difficult for him.

As this insidious disease was taking hold in Dad's chest wall, he began to see every specialist he could think of; Prior to his diagnosis, Dad would joke that he had seen, "every -ist except the podiatrist.".

We lost Mom (Tootie, she and Dad were married for 51 years) very suddenly on July 2nd, and buried her on July 8th. During the burial ceremony (July 8th), Dad was struggling to breathe and needed help remaining upright and walking to and from my older brother's van. ALS had sunk its teeth into Dad, we just didn't know it yet.

On July 10th, we got a phone call from a Neurologist who had received the results of the 61 different tests run from blood draws taken during Dad's hospital stay in June. The Neurologist told Dad that he had a little known disease called Lambert-Eaton and would need to schedule an appointment with a Neurologist for further testing and to determine a treatment plan. Dad and I were half asleep when we got this phone call so, half asleep, Dad said, "Well, that's disturbing!" and went back to sleep. For the sake of not writing a blog that rivals War and Peace in length, we'll skip to the appointment we had on August 8th which is the first time we heard the words, "I'm sorry, Mr. Kemper, but I think you have ALS.".

We got confirmation of Dad's ALS diagnosis on August 13th from Dr. Neel at the UC Gardner Center.

There is a lesson to be learned about making peace with not making progress when you feel stuck or overwhelmed, a reason to find gratitude in the remaining in the same place. Our society is built on celebrating successes, on constantly making progress. Sitting still, honoring the moments in life where you are stuck- that is frowned upon, discouraged, and treated as an abject failure.

However it is the stillness, the periods of "stuckness" that give you the space to catch your breath (unless you have ALS, then your vent will catch your breath for you), allow you to appreciate the small things, and recenter yourself. The "stuckness" is a gift, a concept that I would never have recognized if Dad had never been diagnosed with ALS.

Unfortunately ALS does not appreciate "stuckness", it insists on progress no matter the pace. I have called my Dad Iron Man for over half of my life, and watching ALS rob him of his independence, his freedom to go to family gatherings, sporting events, and to drive is a complex web of grief, anger, and fear. Dad is reliant on his oxygen at all times now. He cannot walk without his rollator, and stairs are incredibly difficult for him. His energy tank runs on low to empty at all times, and it is now difficult for him to be alone for more than a couple of hours.

Thankfully, Iron Man still has his voice, his sense of humor, his love of coffee, and his incredible wisdom. I hope ALS lets his personality and voice to remain in the "stuckness" for a long time.

I am focusing on finding gratitude in the "stuckness", getting to spend so much time with Dad and trying to soak up his stories and wisdom while I still can. If you have any questions that you want me to ask Dad, please send me a message. I try to record every story, every nugget of wisdom, and every time he yells at the Reds, the Wildcats, and the Bengals. I would be happy to record his responses to any questions you have!

The best glimmer of hope for figuring out how to combat the progression of spontaneous ALS is through fundraising, if you are able to please donate to our ALS Walk team at: https://secure.alsohio.org/site/TR/Endurance/General?pg=personal&px=1099351&fr_id=1190.

Although we hate the progress ALS insists on, we are incredibly thankful for the progress our crew from Gustin Construction continue to make through our Accessibility Remodel. See the latest update here:

https://video.wixstatic.com/video/8d9683_5f4249153e95483db8bc40122868e0b4/1080p/mp4/file.mp4

I hope you are able to find gratitude in the aspects of your life where you feel stuck, and remember that sometimes not making progress is the best gift you can be given.

Thank you for your support, love, and prayers. We appreciate each of you so very much!!!

With Love and Gratitude,

Bo and McKenzie