Don Sladek's journey with CBS and his improvement with Gosuranemab
I'm Chavonne Sladek, and I'm Don Sladek's wife. Don is a Vietnam Era veteran stationed in Southeast Asia and proudly served his country. He worked at the Edwards Air Force Base's Rocket Propulsion Laboratory in the area of research and development. We are not scientists, doctors, or researchers; we are just regular people dealing with a terminal illness called Corticobasal Syndrome (CBS). We are usually a private couple but now are compelled to share our unique story.
Like all couples, we each have our talents and interests. I'm more of the "Chatty Cathy," and I tend to jump into things without thinking them all the way through, and I'm also horribly uncoordinated - you know, the type of person who can't chew gum and walk. Don is the complete opposite. The song that we danced to at our wedding was Allison Krauss' "You Say It Best When You Say Nothing At All." Don is truly the strong, silent type.
Don is what some might say, "A man's man." In his younger days, he owned his own plastering company. He was able to shovel 140 tons of sand in a day to feed the plastering gun and do it day after day. They literally had to make Don take a break so the machine could catch up. In the early '90s, construction died out, but he was able to get a job at Edwards Air Force Base on the rocket site test stand. Don was in charge of quality assurance, had a top-secret clearance, and a high-powered job he loved. His caution and precision were exactly what they needed.
Don is one of those people who were born coordinated and extremely strong. He is independent, self-reliant, and could survive in the northern woods of Minnesota on pure grit. This disease has been beyond devastating and something that he cannot wrangle into submission.
Don never used a sick day at work to be ill; those days were a treasure to be used hunting and fishing with his brothers and extended family. Illness was not in his vocabulary, but there were subtle hints along the way. Around 2012, he started complaining of "burning ice flows" on the right side of his head and a "chirping" sound in his ears. They diagnosed him with Lyme Disease and put him on Gabapentin (Neurontin), but the pain was excruciating, and he ended up on the maximum dose to try and control it.
One neurologist said this was probably the beginning of the neural pathways starting to unravel (not those exact medical terms).
In June 2014, Don fell at home. Not the fall of an athletic, coordinated person, but a "strange" fall. He couldn't tell me what happened and fell with enough force to push a chair through the drywall, land on our poor Yorkie, and break her pelvis. He had no recollection of tripping or passing out. He just was on the ground. The hospital kept him for three days while they did CAT scans, MRIs, and lab work, yet, no one could figure out the cause.
At the end of July 2014, Don did this funny "pill-rolling" with his fingers. The doctor did an EEG, and everything was fine, but his balance was still "off." By the end of August 2014, it was taking 17 seconds for him to write his signature. He also had balance problems, and the medical decision was made for him to take a 3-month leave of absence because he was a liability on the rocket test stand. He later told me that for several months leading up to the fall, he was having difficulty at work organizing his thoughts and priorities on the job, but at this time, we thought he would go back to work at the end of his leave.
In September 2014, we were fortunate to see a Neurologist who had a specialty in movement disorders. Her name was Dr. Sarah Kempe-Mehl. We are forever grateful that she did all the preliminary tests, which led us to get an early diagnosis. She did a DaT scan, which measures dopamine levels, and the results were normal. She did a ton of genetic tests, which did not indicate any abnormalities, and by May 2015, we had a referral to UCLA. We were thrilled, and in our mind, Don would finally have a diagnosis, undergo treatment, and we would go back to our lives; we honestly had no clue how much life was going to change.
We saw Dr. Yvette Borderlon at the University of California, Los Angeles (UCLA) in May 2015, and she came up with the clinical diagnosis: Corticobasal Syndrome (CBS). I would never wish this disease on anyone, but if you have it, she is the world's best physician. Her kindness and compassion are unrivaled. If I ask a direct question, she always answers with truth and caring. She has been amazing with Don, and they have worked out the best possible medication regimen. Don knows his body and when a drug is wearing off, and she knows what he can do to help mitigate the problem. And so, we rode the roller coaster of improvement and decline. This disease has not had a straight downhill trajectory.
Don has been fortunate to work with two different types of speech pathologists. In August 2015, he was having some swallowing difficulties. He had an x-ray swallow test, which showed where food was getting stuck. The first speech pathologist gave him tips on drinking, chewing, and swallowing that were very helpful. This therapy was short-term. The second speech pathologist, Sheryl Heidt, has dealt with his cognitive issues. She has been phenomenal, and Dr. Bordelon can see her influence in helping us to problem-solve what is happening in Don's world and find ways to "access his brain." We have seen her weekly since 2016.
And yet, this is a terminal diagnosis.
Preparing for Death
We met with Dr. Bordelon in July 2017, and with love and compassion, she told us we needed to see a palliative care physician. Don signed a form called a POLST (Provider Orders for Life-Sustaining Treatment), which would make clear his wishes. He chose to have a DNR (Do Not Resuscitate) in place. He also decided not to have a feeding tube line, called a PEG (Percutaneous Endoscopic Gastrostomy), and even no treatment for pneumonia. We put our affairs in order with a living trust and decided we would not chase "snake oil:" treatments full of unproven promises. We talked with Dr. Bordelon about Don donating his brain to the brain bank for the study of his disease, but I was worried the scientists would look at the cells and not see the essence of him, so I began to videotape him, starting with his neuro exam in 2015. We have taped many subsequent neuro exams and a lot of anecdotal videos. We were hoping for a miracle but planning on the reality of his early death. We decided we would live whatever life he had to the fullest and be grateful for each day.
Don has great respect for research and development, and in the fall of 2018, Dr. Bordelon said there was a new clinical trial. To learn more about our clinical trial experiences, please click the button below.