When Janet noticed a slight tremor in her right hand at the age of 49 and went to see her doctor, she was shocked to learn she had Parkinson’s disease. With no family history, all she knew about Parkinson’s was based on the media coverage she had seen regarding Muhammad Ali and Michael J. Fox. She immediately began reading and researching everything she could find to educate herself and her family about this neurodegenerative disorder.
According to Janet, “What I learned is that there is no ‘suddenly’ in Parkinson’s, so I wasn’t going to have those symptoms overnight. My focus then turned to what I could do to slow progression.”
Many patients experience resting tremor, slowness of movement, rigidity/stiffness and unsteadiness, and their long-term prognosis may include mobility issues. Janet decided to live her life focused on what she can do versus what she can’t.
More than 1 million people in the U.S. and an estimated 10 million people worldwide are living with Parkinson’s disease, the fastest growing neurological disorder worldwide and the second most common after Alzheimer’s disease. Each year, 60,000 new cases are diagnosed and for many, early symptoms may go undetected.
Already exercising regularly, Janet increased her commitment to leading a healthy lifestyle with daily exercise, wiser food choices and rest. She told herself, “Good stewardship today will lead to a better tomorrow. Sow today what you want to reap tomorrow.” Most importantly, she recognized that her tremor increased when she was stressed – as if her body could sense any emotional, physical or spiritual pain. For Janet, this is where exercise and rest have helped, but her faith has also played an important role through the power of prayer and purpose.
Janet soon became an advocate for Parkinson’s research and funding. She also served as a patient advocate on the University of Kentucky’s movement disorder team, meeting with patients and their families to help them cope with a diagnosis.
Over ten years into her own diagnosis, Janet’s tremor has increased, and she now uses her left hand for most things other than signing her name. Known for her beautiful voice and multiple performances of the National Anthem at large sporting events, her singing voice has been changed by Parkinson’s. While her public performances have stopped, however, Janet continues to move forward. “That’s my principle of life – keep moving forward. God asks us to have the faith to believe that there is still a plan forward. Time is measured in minutes, but life is measured in moments.”
Janet remains optimistic about stem cell research and better outcomes for patients like her. She is enthusiastic about clinical trials underway and interventional therapies like deep brain stimulation (DBS), and believes that a cure for Parkinson’s is possible in her lifetime.
The National Stem Cell Foundation partners with large national organizations like the Michael J. Fox Foundation and others to co-fund promising Parkinson’s disease research and clinical trials. Two projects funded to date are cell-replacement therapies in pre-clinical development to halt or reverse Parkinson’s symptoms. A separately funded collaboration between research teams in New York and California is now conducting a first-in-man study of neurodegeneration in space, using cells derived from patients with Parkinson’s disease and progressive MS. To learn more about this research, click here.