THE TALE OF TWO VETERANS
Don Sladek's journey with CBS and his improvement with Gosuranemab
The True Tale of Two Vietnam Era Veterans:
Don Sladek and Tom Thompson
Originally published on LinkedIn for Veterans Day 2022
My name is Chavonne Sladek, and I would like to share with you my husband, Don Sladek, and Tom and Wendy Thompson.
Don and Tom's Military Service and Civilian Work Careers
Don Sladek (right) on the flight line in Udorn, Thailand
Don served honorably in the U.S. Air Force from 1972 to 1976. He was a sergeant in the 601st Airborne Photo and deployed to Udorn RTAFB in Thailand in 1975. His military occupational specialty was Aerospace Photographic Repairman. The Thai Army would spray Agent Orange between the taxiway and the runway using big buffalo tanks pulled by all-terrain vehicles (like a pick-up truck with tracks). Don lived in the barracks at a compound run by the Royal Thai Airforce off base. The compound perimeter was also sprayed with Agent Orange.
Don entered the Air Force, weighing 210 pounds. However, he became extremely sick while stationed at Udorn, dropping his weight to 165 pounds. He was flown to Ubon and treated without a diagnosis.
The rocket site at Edwards Air Force Base, California
As a civilian, Don owned a plastering company. In the mid-1990s, he was hired at the Air Force Base Rocket Propulsion Laboratory and medically retired as a quality assurance supervisor with a top-secret security clearance.
Tom in Phuoc Vinh, Vietnam
Tom served honorably in the U.S. Army with the 1st Calvary, 13th Signal Company from 1967 to 1970. He was stationed in Phuoc Vinh, Vietnam, at a forward landing base from January - May 1969. Tom copied and delivered confidential code to the headquarters of the 1st Calvary division.
Tom had a fellow soldier, who was startled, jump on his back. The medic injected him with Robaxin at a fast rate, which created a hole in his hip through the muscle, and he was sent to the states for rehabilitation. While in Vietnam, he was sprayed with Agent Orange and remembered seeing bubbles on his arms. Wendy recalls Tom fighting in his sleep to such an extent that they would have to sleep in separate bedrooms
Tom living a civilian life.
As a civilian, Tom worked for Pacific Power, Pacific Ore, and Utah Power. He was an office manager and customer service manager. His knowledge was highly respected, and after retirement, he was hired as an independent contractor.
Don and Tom's Medical History
Don was relatively healthy until 2013. Then, Don had severe pain on the right side of his head that felt like burning ice flows and a continuous chirping sound that felt like a vibration. In addition, he had pain in his arms and legs that felt like an electrical current was burning through them.
In June 2014, Don collapsed and fell at home. His balance was horrible, and he had severe anxiety and depression. He could not hold a coffee cup in his hand because of the tremors and spontaneous jerks. Problems were worse on his right side, even though he is left-handed. The right side of his body felt like there were numerous knots. He could not move his head from side to side, his neck was stiff, and his muscles were in intense pain. He would shake so badly at night that he would lie on his right side to hold his body down. By the beginning of 2015, he was walking with a cane and had several falls.
From 2014 to 2019, Don lost so much muscle strength that he could not carry a laundry basket down the hall to the washing machine. Instead, he had a cart with a strap to wheel the basket, and one load of laundry would exhaust him for the day.
Don had the great fortune to become the patient of Doctor Yvette Bordelon, a highly respected neurologist at UCLA. She is a practicing clinician and researcher of the latest advances in treating neurodegenerative disorders. Dr. Borelon's care slowed Don's deterioration, but he continued to decline for the first four years after diagnosis. In August 2016, Dr. Borderlon said the average life expectancy for this disease was 6-8 years and recommended that Don see a palliative care physician. With the palliative care physician, he completed a DNR order, authorized no treatment for pneumonia, and requested his brain be donated to the brain bank.
Tom's journey with Corticobasal Syndrome (CBS) began before they knew there was a word for why he shuffled when he walked, held his left hand/arm up like a traffic cop, and struggled to do simple things like screw in a light bulb. Finally, in 2018, he received the diagnosis: Corticobasal Ganglionic Syndrome ("syndrome" changes to "degeneration" or CBD, after a brain autopsy confirmation.) After a consultation with a team of Seattle specialists and learning that it is so rare (5 in 100,000 people), being told there was no drug and life expectancy is 5 to 7 years after diagnosis, Wendy vowed they wouldn't let CBS define their lives. Well...lots of luck with that. Their world has narrowed, and CBS is the center. They have no hope that he will get better and have resigned themselves to at least give Tom a quality of life in the present. Their lives revolve around physical, occupational, and speech therapies and visits to his neurologist for Botox injections to lessen the pain in his left arm and hand. He has had balance problems and dislocated his left ring finger. His left hand and arm are useless, and his right hand is also losing dexterity. His speech is slow, and he sometimes slurs his words. He often has trouble verbalizing his thoughts. Reading is difficult, and he can no longer do Soduko, one of his loves. He needs help getting up from chairs, testing his blood sugar, giving himself insulin injections, zipping and buttoning clothes, and putting on shirts.
Don and Tom's VA Rating Schedule
Don applied to the VA in 2018, hoping to find a clinical trial.
He was denied a rating for Corticobasal Syndrome because he was stationed in Thailand.
10% rating was granted for tinnitus.
June 2021 - VA reopened his case under the Nehmer Consent Decree
March 2022 - We asked for Don to see a VA neurologist, but because of his low rating schedule, the soonest he could be seen was the end of November 2022. Ironically, his VA physician is Dr. Adrienne Keener, who saw Don in her fellowship at UCLA in 2015. She could not believe he was still alive and doing so well!
June 2022 - Case denied under Nehmer due to his job description in Thailand. He would have been approved if he had been in Vietnam.
August 2022 - PACT-Act approved. Don has reapplied, but as of January 2023, he has not received any notice of approval or denial.
Tom's VA ratings are multi-layered.
60% - Tom was service connected with lumbar strain and sciatica due to an abscess on his right buttock. He has had chronic pain in his hip and muscles and became dependent on painkillers.
20% Chronic lumbar sacral strain
20% Diabetes/Agent Orange
10% Sciatica right buttock
10% each for diabetic peripheral neuropathy in his right and lower extremities
The timelines for these compensations were:
1970 - 10%
1975 - 30%
2001 - 70%
2019 - Tom's application for Corticobasal Syndrome was denied.
2021 - Under Nehmer, Tom was granted service connection for Corticobasal Syndrome with a 30% rating. He also received 20% for upper left movement disorder and 40% for stooped posture.
Don and Tom's Diverse Treatments
Tom was diagnosed by a Physician's Assistant in Idaho and verified by a physician in Coeur d'Alene, Idaho. He would again be seen by a team from the VA in Seattle, WA. There has been no significant response to treatment.
Tom has continued to degenerate. He is now in a wheelchair, and as Tom says, "I can't wipe my own ass." But through it all, they manage to find joy and things to laugh about. Wendy is in awe of Tom's attitude and his acceptance of help.
Don's physician, Dr. Bordelon, found a clinical trial that began in January 2019. The treatment drug was Gosuranemab, produced by the large Boston pharmaceutical firm Biogen. It was studied in more than one clinical trial to determine its effectiveness in attacking the protein in atypical Parkinsonism, not only CBS but (Progressive Supranuclear Palsy) PSP, and Chronic Traumatic Encephalopathy (CTE) caused by head injuries from battlefield wounds and contact sports. Gosuranemab was also in a clinical trial for Alzheimer's Disease.
From the first month of the clinical trial, Don's condition dramatically improved through a year of monthly infusions of Gosuranemab as an essential component within a broad combination of medications overseen by Dr. Bordelon. There are no words to explain the miraculous transformation. This story is told best with video. Please click on our YouTube link: https://www.youtube.com/watch?v=VIrd9idWX2M
Unfortunately, at the end of the year, Gosuranemab had not met expectations in a simultaneous trial. As a result, Don's CBS trial was prematurely terminated, resulting in Don losing access to a therapy that seemed like a miracle. Within two months, Don's condition reversed back to decline.
As the medication was still in production for an Alzheimer's trial, Don and I quickly organized a small group of close friends, including a physician for help on medical issues and a computer expert to build a website, intending to appeal to Biogen for restoration of Don's access to Gusuranemab. These efforts, strengthened by a powerful direct presentation by Dr. Bordelon, led to the company's decision in October 2020 to restart Don's infusions.
For two years, Don has been stable with his monthly Gosuranemab infusions, supported by Dr. Bordelon's overall care plan. Don and I are huge fans of Biogen's Gosuranemab, and we believe it has been indispensable to his continuing quality of life. We will be forever grateful to this company. Unfortunately, Biogen is no longer manufacturing the drug. However, they have generously given him enough medication to get through June 2023.
Don was able to spend the summer of 2022 enjoying time with his family
Our Call to ACTION
We are telling this story because in August 2022, with a large bipartisan majority, Congress passed, and the President signed the PACT-Act. This new law expands VA health care and benefits to veterans exposed to toxic substances. One of the sections of the Act, Title V, provides funding for research.
Since Gosuranemab, as a critical component of a care plan for Parkinsonism, has demonstrated some success, we are reaching out to Veterans, veteran's organizations, neurologists and other physicians, organizations that advocate for patients with neurodegenerative diseases, Biogen researchers, Biogen veterans, and policymakers to help initiate production and clinical trials with this medication.
Ironically, Tom and Wendy live in "Hope," Idaho. Time is of the essence, and we need help. Our Veterans deserve more than to be recognized; they deserve treatment and need it NOW!
Tom was diagnosed with Corticobasal Syndrome in 2018. This is him now in 2022.
Don in August 2022
Don was diagnosed with Corticobasal Syndrome in 2015, living life with Dr. Bordelon's medication regimen and the power of Biogen's Gosuranemab.
The U.S. military has made a sacred commitment to leave no one behind on the battlefield. We believe this includes the duty to fund research, and it should start with Biogen's Gosuranemab.
#VeteransDay #Gosuranemab #Biogen #PACTact #Parkinsonisms #CorticobasalSyndrome #VAHealth #Veterans
@DenisMcDonough @DonMcgeary @ShereefElnahal
@VAInnovation @DeptVetAffairs @VeteransHealth @cohenbioscience @ChrisViebacher @VADeptSecRemy @VAVetBenefits