On his first Space Shuttle mission, Rich Clifford whispered a little prayer.
“Please Lord let something go wrong so that I can fix it,” he recalls with a smile.
But on the launch pad, strapped into the Shuttle with its two massive solid rocket boosters primed for ignition, Rich had second thoughts.
“I said to myself: ‘Lord, scratch that earlier request.’”
Strange as his whispered prayer sounds now, it wasn’t so odd for an astronaut — someone with “The Right Stuff” — to want to be tested.
As a West Point cadet, then as an experimental test pilot, then as a Master Army Aviator and then as a NASA mission specialist, Rich spent his life facing huge challenges and overcoming them.
But for almost two decades, since the time just before his last mission into space, Rich has quietly faced the biggest challenge of his life: Parkinson’s disease.
His story and his fight against Parkinson’s is the subject of Zach Jankovic’s soon to be completed documentary, “The Astronaut’s Secret.”
On a recent visit to 23andMe, Rich said there’s a reason he’s been talking about that secret now. He has a message for others with Parkinson’s: “
“Don’t let it drive what you do. You are in charge of your future.”
Rich’s comments came earlier this year when he and Zach, as well as a small crew visited 23andMe to shoot some footage for the film and get a run down of some of the new research we’re doing.
They also sat down and spoke with our CEO Anne Wojcicki about the 23andMe’s Parkinson’s Research Community.
For Rich, 23andMe’s approach of using consumer-driven research is particularly appealing because it empowers people. It gives them a role in research, speeds the process of discovery and gives people back information about themselves.
23andMe created this novel approach to enlist people as partners in research, said Anne. In the case of Parkinson’s our efforts have already yielded some promising results, she said.
Last year we published a research paper detailing our discovery of two novel genetic associations with Parkinson’s. And 23andMe also identified a genetic factor in a gene called SGK1 that may protect against the disease. We’ve partnered with The Scripps Research Institute to further study the connection between SGK1 and a Parkinson’s to determine if indeed this variant is protective against the disease. What’s compelling about this finding, Anne said in the interview, is that it was made possible because we found people in our database who have a high risk variant for Parkinson’s but never developed the disease. By comparing these people with those who did develop Parkinson’s our researchers were able to discover this potentially protective nature of SGK1.
Beyond the potential of this discovery, Rich said he sees great promise in using genetic analysis to better diagnose Parkinson’s. The sooner a patient can be diagnosed the sooner they can start treatment and the better chance they’ll have at managing the disease.
This is particularly relevant for Rich, who was fortunate enough get an early diagnosis, while with NASA. It didn’t stop him from flying on his third mission in 1996, where he made the first space walk in more than two decades with a fellow astronaut. The diagnosis also didn’t stop him from spending 15 years working in a high profile job at Boeing after he left NASA and retired from the military. It was Zach’s dad, Dr. Joseph Jankovic, director of the Parkinson’s Disease Center and Movement Disorders Clinic at Baylor College of Medicine in Houston, who first diagnosed Rich.
But Rich said even though he is optimistic about the work on Parkinson’s and hasn’t let the disease slow him down, it hasn’t been easy. The first hint he had of the disease was when he noticed that his arm didn’t swing in the normal way when he was walking. When he got the diagnosis he told his doctors, “OK so fix it.” He admits, that at first, he was in denial about the disease.
But then, like with every other challenged he’s faced in his life, Rich met it head on. He wanted to continue his work with NASA and the doctors supported him, he said.
Now he wants to share his story in the hopes of inspiring others with Parkinson’s to understand that a diagnosis doesn’t mean that they won’t be able to continue to go after their dreams.
But to do that people with Parkinson’s have to take charge, learn what they can about the disease, participate in research and not give up. One of the things that resonated with Rich about what 23andMe does is that it gives people the tools to do that. The work could also lead to early detection for people facing Parkinson’s, and the sooner someone knows they’re at risk the sooner they can do something about it.
“Knowledge is power,” he said.