I am a physician, a USAF veteran, a triathlete, a wife and a mother. In early 2020, our family moved from Salt Lake City to Cleveland after my husband accepted an amazing opportunity at Northeast Ohio Medical University (NEOMED), which is a public MD medical school in the Cleveland Area. NEOMED coincidently has a strong research focus in neurodegenerative diseases such as Parkinson’s and Alzheimers.
Today Show – October, 2023
Once we arrived to Cleveland, I began looking for jobs as an anesthesiologist. I signed with Cleveland Clinic in March, 2020, 2 weeks before the start of the COVID pandemic.
By November 2020, at the age of 46, life was starting to feel like we were getting towards a new normal. I was busy working and being a mom. One evening, while sitting on the couch with my family, I noticed that my left arm was shaking. At first it was more of a curiosity. I thought to myself that’s weird, why would my arm just start shaking. I typed “unilateral resting arm tremor” into google, and the page that came up had one article about Parkinson’s Disease after another.
It was at that moment that my world just stopped. As I read more about Parkinson’s disease, I realized that I had been having symptoms for years, that I chalked up to getting older or being super tired and over extended. I had been getting more and more stiff when getting out of bed in the morning and my neck would be so stiff, it was painful to turn my head, I would shuffle about for a few minutes until I got going, and then I would be fine. Going down stairs, I had starting going one step at a time because my left hip was so tight all the time. My husband was always getting on my case to finish my sentences, it turns out decreasing the volume of your voice at the end of sentences is very common in Parkinson’s patients.
The next day at work, I met with the hospital neurologist in the physician’s lounge. He pulled me into a private room off the lounge and after hearing the story did a neuro exam and confirmed that I likley had Parkinson’s disease, but ordered a few tests to rule out MS and Wilson’s disease.
He said he would be happy to be my neurologist but highly recommend I also see a neurologist specializing in movement disorders. He called them the maestros of medications. That turned out to be exactly the case. About a month later, I was able to get an appointment to see Dr. Ben Walter at Cleveland Clinic’s main campus. He confirmed that I had Parkinson’s disease and started me on a dopamine agonist. It made the tremor less noticeable and I felt better but I had horrible side effects. It took multiple medication adjustments to get me to a point where my tremor was well controlled, my blood pressure was normal, my anxiety and depression were under control and I wasn’t gaining weight because of the medications. I gained 30 pounds between 2020 and 2021.
After my diagnosis I experienced crippling anxiety and depression for the first time in my life. I was told by one primary care doctor, that I should probably give up running because as a Parkinson’s patient I was at increased risk of falling. I became so anxious, wasn’t sleeping and ended up in a state of mind where I could not think clearly because I was so sleep deprived. On top of that, I wasn’t doing the one thing that had gotten me through every other challenge in my life, exercise. I took about a month off work to figure it all out, meet with my neurologist, adjust my meds and then regroup and figure out a plan moving forward. I am so incredibly grateful for this. After some medication adjustments, having more time and energy to exercise, I was eager and ready to get back to work. I currently work 3-4 days per week.
Looking back, the period of time after my diagnosis followed the stages of grief. In my mind Parkinson’s was a disease that affected older men, and every now and then someone younger might get it, but certainly not me. I was healthy, I had been active my whole life, I had no family history of Parkinson’s disease, and now I visualized myself shuffling about and being disabled in a few short years. I tried to joke with my friends at my US Air Force Academy reunion in 2021 that they could help me decorate my walker at the next reunion.
During my first meeting with Dr. Walter, he informed me that many patients found it helpful to enroll in research studies. I didn’t right off the bat, but after learning more about some of the studies I was intrigued by a study that was being conducted by Dr. Jay Alberts at Cleveland Clinic in collaboration with the neurologists at the University of Utah, and it involved cycling, something that I had previously loved to do. I contacted the study coordinators, and was subsequently enrolled in the study. I was randomized to receive a Peleton bike for a year and encouraged to ride it at least 3 times a week, with phone calls from a physical therapist and encouragement regularly.
I quickly found that the more I rode the bike the better I felt. I started to think about my future in a more positive way and started with the goal of finishing a half marathon, and then a half ironman. The more I exercised, the better I felt, and I realized that my medications were literally legal performance enhancing drugs and the more I exercised the fewer of them I needed. With the Parkinson’s medications, I could run without feeling miserably stiff afterwards, and it felt smooth, when I swam again. I was excited to feel like an athlete again. The exercise also helped with the anxiety and sleep problems. I decided to set the biggest goal I could think of, and that was to once again compete in and finish Ironman Hawaii World Championships and run down Ali’i drive to the finish line in Kona.
I was connected with InMotion, a local community Parkinson’s Center started by physician Dr. Karen Jaffe, trainer Ben Rossi and Allan Goldberg among others. Dr. Jaffe shared her story of also being diagnosed in her mid 40s, 10 years prior to my diagnosis. It gave me so much hope seeing all that she had accomplished since her diagnosis and that by staying active she looked like any other normal woman, who may just be a little more shaky than most, but was engaging and fun She told me her biggest regret was keeping her diagnosis a secret for as long as she did, and that how much sharing her story has helped her as much as those with whom it was shared.
After watching the NBC broadcast of the 2022 Ironman World Championship race, and seeing the stories of inspirational athletes that were shared, it occurred to me that my story could inspire a lot of people and educate about the effectiveness of intense exercise on slowing the progression of the disease and the management of its symptoms. I wrote Ironman, and was offered an opportunity to compete at Kona 2 months before the race and share my story as part of it.
Ironman Documentary – Episode 1, Last 9 minutes
Ironman was an incredible experience and a great opportunity to share my story and raise awareness about the effectiveness of high intensity exercise in the management of Parkinson’s disease and in slowing the progression of the disease. As part of that, my story received significant media attention including an appearance on the Today Show, 2 pages in Women’s health magazine and one of the featured athletes in the Ironman documentary, among others.
Ironman Documentary: Last 2 minutes
The brain is a very complicated but miraculous part of who we are. I think of exercise, and balance as training different parts of my brain to compensate for the cells that are dying off because of Parkinson’s disease.
