Growing up I never considered Jimmy a nickname. An uncle once tried to call me Jimbo, which I flatly rejected. Jimmy was my name. I loved the way it rolled off my tongue: “Jimmy Ogan”. My name had symmetry and a hint of alliteration.
In middle school, all the Jimmys became Jims. And I was never Jimmy again, except to family of course.
Somewhere along the way JimBob popped up as a term of endearment. One of those random attempts at verbal affection. No one actually refers to me as JimBob, but I have always liked the sound of it.
PeggO is another random attempt at verbal affection.
Thursdays at UVA Medical Center in the Department of Neurology are ALS clinic days. A multi-disciplinary team of clinicians meet with ALS patients and their families to provide highly coordinated, expert care. Patients welcome expert after expert into their exam room. Imagine the patients holding court, receiving their trusted advisors one after the next. It’s great. And it’s one of the reasons that UVA is named as a Center for Excellence in ALS care.
ALS clinic is also a long morning.
Yesterday was ALS clinic for JimBob and PeggO.
PeggO rises early on ALS clinic days, because JimBob needs to eat before clinic, and he needs snacks to get him through the morning. PeggO makes soft boiled eggs and toast before clinic. She has decided on 4.5 minutes for the perfect egg. She’s right, of course. It’s perfect.
Snacks for clinic include peanut butter, crackers, oranges, a banana, and shelled pistachios, because they are JimBob’s favorite. In between advisors, PeggO offers snacks. The exam room invariably smells of oranges and peanut butter.
ALS clinic is an event for JimBob and PeggO.
Maybe you have noticed that exam rooms now have wide chairs that look like loveseats, because many American patients need a loveseat to sit comfortably in a chair. They should probably offer loveseats on airplanes.
JimBob and PeggO love the loveseat. They park them selves in the loveseat facing the computer station to hold court, snacks at the ready.
PeggO records every detail in her ALS journal. She also consults notes from literature reviews, webcasted lectures, and general reading. She knows JimBob’s weight and Peak Expiratory Flow from every visit.
JimBob provides comic relief. Every Royal Court has a jester. JimBob likes being a cheerful patient.
PeggO and JimBob make an effective team. The advisors leave smiling and grateful for the opportunity to help. PeggO and JimBob leave feeling grateful for expert, compassionate care.
The ALS advisors had nothing but good news yesterday. Functional status measured by the ALSFRS-R remains unchanged, Forced Vital Capacity remains above 100% predicted, and everyone was delighted to hear about the positive effects on JimBob’s energy from the AMX00035 he is now taking off-label. Everyone applauded JimBob and PeggO for running 2-3 miles mosts days. JimBob could do more stretching, and he could eat more protein. Be sure PeggO has taken note of these necessary improvements.
As for Righty and Lefty.
Righty rose to every exam request in good humor and without fanfare. Lefty struggled to demonstrate strength and coordination, especially in the thumb and between the ring and middle fingers. Lefty gave it the old college try, and welcomed a gentle squeeze from Righty, a hand hug, after the exam. God Love ya both.
Every story has a beginning, a middle, and an end. Our ALS narrative is just beginning. We are meeting the characters, identifying dynamic tension, developing the plot and a vision for the story arch. Beginnings consume abundant energy. Snacks and hugs are essential.