On Friday January 27, 2012, the ALS community lost a member whose commitment to cutting-edge research, and personal dedication to help people living with Lou Gehrig’s disease was unparalleled. A person who served as an inspiration to every member of the neurology field, from clinicians to researchers, author of over 60 scientific papers, and known throughout the world as a leader in the ALS community. A man whose willingness to share his experiences brought more attention to ALS, since Lou Gehrig was diagnosed.
At their home in Northern California, surrounded by his family, Dr. Richard K. Olney founder of the ALS Center at UCSF passed away peacefully, after an eight-year battle with Lou Gehrig’s disease. He was 64 years old.
“We are saddened by Dr Olney’s death, but we will be eternally grateful to him for dedicating his life to solving ALS,” said ALS Association President and CEO Jane H. Gilbert. “His work as a clinician and a researcher will be remembered by all of us for years and will provide the platform for those who come after him.”
Dr. Olney dedicated his life to ALS research and patient care. In an article for the New York Times in 2005, he explained what first drew him to the disease after becoming a neurologist.
“I found out that the daughter of my favorite teacher in junior high died from ALS.,” he said. Having also trained as a psychiatrist, he said he was “much more comfortable than most neurologists in relating to patients with fatal disease.”
He also liked the fact that people with ALS remained mentally sharp. And, he said, in the early 1990’s, “advances in molecular biology suggested that ALS might become very treatable during my career.”
He became internationally known for his clinical innovations, dedicated teaching, groundbreaking neurophysiological research and a strong belief in the team approach to the complex management of ALS.
In 1993, Dr. Olney founded the ALS Treatment and Research Center at UCSF, which became a an ALS Association Certified Center of Excellence in 2001, providing multi-disciplinary care to people with Lou Gehrig’s disease.
“One of my proudest, professional accomplishments has been the development of the Center,” Olney said, in a statement to the San Francisco Neurological Society of which he was a member for over twenty years.
His efforts were helped by his student and protege, Dr. Cathernine Lomen-Hoerth, Nurse Manager Dallas Forshew, and a group of dedicated professionals in respiratory therapy, nutritional counseling, occupational therapy, physical therapy, social work, research coordinators, as well as members of The ALS Association.
In July 2003, Dr. Olney began noticing problems with his right leg becoming a little stiff, and that his movements and coordination were slightly impaired. An extensive neurological evaluation turned up a protruding disk that compressed his spinal cord, and so he underwent back surgery in September. For a month afterward, he seemed to be getting better, but by November, he was obviously getting worse.
“The possibility of ALS. was raised, and was my expectation, as I underwent another round of testing, ” Olney said.
Those tests revealed additional disc problems which could be putting pressure on the spine. So Olney and his doctors continued to hope that his problems could be cured with surgery. He had two more operations, in December 2003 and March 2004. By mid-May 2004, he noticed mild stiffness and slowness developing in his right arm. He gave himself a common test for ALS- counting how many times he could tap his fingers in 10 seconds. From experience, he knew that he could usually tap 65 times but now he had slowed to 55.
“I knew I had ALS then,” Dr. Olney recalled.
After additional testing, on June 11, 2004, Dr. Lomen-Hoerth gave him the official diagnosis.
Dr. Olney disclosed his diagnosis and resigned from active leadership of the ALS Center. “Cathy Lomen-Hoerth has shared in much of this work. She has taken over the directorship of the ALS Center and is leading it to greater promises,” Olney said to the San Francisco Neurological Society. “One of my greatest hopes is that the Center will thrive for many years to come.”
Since that time, he continued in his efforts to help fight Lou Gehrig’s disease. He became an active participant in several clinical research trials.
Olney continued to raise public awareness in the media through many articles and interviews in the San Francisco Chronicle, NY Times, Wall Street Journal, ABC World News Tonight, 20/20, CBS Morning and Evening News to name a few. Because of his incredible commitment and efforts, Dr. Olney was named as a Chapter ALS All Star Award Recipient in 2007. Dr. Olney was regarded as role model world-wide, through his dedication to educate the public, efforts to advance research towards a cure, and through sharing his personal experiences with the disease, as a clinician treating it and as a person living with it.
“Dr. Olney will be remembered not only as a courageous person with ALS, but someone who as an outstanding clinician and scientist made major contributions both for patients and the scientific field,” said ALS Association Chief Scientist Lucie Bruijn, Ph.D. “He has been an inspiration to those of us who work every day to understand the disease with a hope to find meaningful therapies for ALS. It is an honor to have known him personally, and The ALS Association is proud to have funded his important studies to identify genetic and environmental influences that impact the disease.”
But the most important aspect of his life to Dr. Olney is his family. He had been married for thirty-eight years to wife, Paula, who works as a dialysis nurse. They have two adult children, Nick and Amy, who initially had moved back home in anticipation of the worst after their father’s diagnosis.But fortunately, Olney’s decline reached a plateau, and they were able to resume their educations and personal lives, all while staying close to the family home. Sadly, the challenges that the Olney’s faced are not unique to any one facing Lou Gehrig’s disease.
Both children are following the family’s health care, public awareness, and patient and family advocacy footsteps. Their love and dedication to each other was inspiring to all.
Now married, Amy Dobbs works as an occupational therapist. Based on her experiences, she wrote a manual for ALS patients titled, “Daily Activities Made Easier for People with Amyotrophic Lateral Sclerosis (ALS)”
“By using the manual, people with ALS can be their own advocates in maintaining their quality of life,” Dobbs said. “They can use the manual to find equipment and/or tools to make their everyday activities less difficult. It provides concrete and specific information on adaptive equipment that can help people with ALS preserve independent functioning.”
In 2005, she also held a concert and fund raiser, entitled “Rock ALS”, Stephen Kellogg and the Sixers, a favorite of Amy and Rick’s, was the featured band.
In an early interview, Dobbs shared some words of wisdom imparted to her from her father.
“He will say, ‘You know everybody dies, and I will die sooner than I would’ve liked to. I have this time to tell you guys what I want you to know. You know I love you. I know you love me’.”
Nicholas Olney resumed his studies in medicine and was accepted at UCSF Medical School. He married his wife Caroline and together they welcomed a baby boy on May 11 2011, named Richard for his grandfather, but who the family calls “Little Ricky”.
In April 2011, Dr. Olney spoke with Carl T. Hall at the SF Chronicle about his push to complete a clinical research paper, in collaboration with his son Nick, then a fourth- year medical student , even though he could communicate only via eye-tracking technologies.
“In part,” Olney said, “I want to write a paper with my son.”
It was during this interview where Dr. Olney expressed his own assessment of the state of his condition
“My quality of life is becoming compromised,” he said to Hall. “Sometimes I feel tired.”
After such a long period of stability, the disease appears to be gaining momentum again. Olney had almost no muscle function left.
“He’s at the end stages now, certainly,” said Dr. Catherine Lomen-Hoerth.
“Dr. Olney will be greatly missed. The loss to our ALS community is immeasurable.” said Fred Fisher, President and CEO of The ALS Association Golden West Chapter.
“His commitment to excellence in patient care, clinical research, and advocacy has contributed to people with ALS living longer, better quality lives. Dr. Olney’s legacy includes important discoveries, promising targets for future research, and more clinical trials in California than ever before.”
In a summary from the article, “When The Doctor Becomes the Patient“, Dr. Olney shared these insights:
“Having made the diagnosis in more than 1,000 people during my career, I knew much of what it meant to receive the news and to live with the disease. Then I made the diagnosis of ALS one last time—in myself—before my neurologist confirmed it. What remained for me was to see how helpful the advice I had been giving my patients over the years would be to me and my family, and then to experience actually living with the disease.”
“I found that accepting the fatal diagnosis was easier than I expected…I have enjoyed a good quality of life since my diagnosis… I focused on what I was able to do today and realized that more disability would come on gradually, meaning that I would have time to adjust to it. The highlights of my weeks are visiting with family and friends…
“My spiritual beliefs are strong, so I face a peaceful death with equanimity and with the knowledge that I have had time to prepare for the welfare of my wife and children as well as possible.”
Links to Articles and Media Clips about Dr. Richard Olney
Dr. Olney has been an active spokesperson for the disease, and has been featured in many publications such as People and USA Today, as well as appearing on most national TV networks. Please use the links below to access these articles and media clips.