Rarely is there a time that I don’t think about Warren. It’s uncanny. I don’t love him, yet he is with me all the time, so I seek ways to accept him. Warren is the name my three kids and I gave to my diagnosis of young-onset Parkinson’s disease (YOPD). Instead of saying the scary term, “Parkinson’s disease,” we laugh and say things like, “Warren is around,” or “Warren kept me awake all night.” I have no choice but to respect him, as he has taught me about gratitude and the importance of being present.

I was diagnosed with YOPD at 41 years old. Following the diagnosis, I began to realize how many of my symptoms were signs of Parkinson’s. I had lost my sense of smell seventeen years earlier. At the time, I thought my son was especially sensitive to smells, and I often joked that he “took my sense of smell.” I was also a marathon runner and I started to fall a lot during training. My foot also started doing this funky, painful turn. I had no idea that this may have been a symptom of PD.

Two years later, and with much stress in my life, I developed a tremor in my arm and sought medical advice. When I visited a neurologist, she watched me walk and noticed that my left arm did not swing. I had never even noticed that!

I never imagined being diagnosed with YOPD. I was a single mom and a full-time teacher raising three kids. I tried to find child-friendly literature to explain Parkinson’s to my kids; there were some books, but most of them included a surplus of medical jargon. I am currently working on a children’s book to provide families with the springboard they need to discuss this disease and how it may impact them.

I was in denial about PD for a long time, and it was my daughter’s school project that pushed me to accept my diagnosis. She created a carnival “Go Fish” game titled, “Fishing for a Cure for Parkinson’s.” WOW. Kids say the darndest things.

Now ten years later, I “runwa” (run/walk) and try to get my heart rate up nearly every day. I walk “BIG” and do a variety of exercises. I also try to challenge my brain daily. I am stronger than I have ever been, and I put my physical and mental health first. It hasn’t been easy, and Warren sometimes still shows up, but I eat healthy and I have finally figured out how to stay asleep! I work hard to keep a positive attitude.

I was first introduced to the Parkinson’s Foundation through the Community Partners in Parkinson’s Care program. Now that my children are older, I can devote more of my time to supporting the Foundation and assisting the Parkinson’s community! One way I show my support is through fundraising for Moving Day. This past year I raised more than $1,200 for Moving Day Twin Cities, and I plan on surpassing that amount next year.

I look forward to sharing my knowledge about PD and finding more creative ways to raise money for research. I hope that one day, I can finally break up with Warren! 

Learn the 10 early signs of Parkinson’s disease.

I am 63 years old now, but I was diagnosed with tremor-dominant Parkinson’s disease (PD) four years ago. After much encouragement from my children, I decided to visit a neurologist to get answers.

I underwent a 30-minute diagnosis session with my local neurologist. At the appointment, he said, “You have Parkinson’s. You have 10 years to live, and it will not be good.” Then he walked out of the office.

I sat there in shock, not knowing which way to go.

A dear friend connected me to Dr. Joseph Jancovic from Baylor College of Medicine, a Parkinson’s Foundation Center of Excellence. Dr. Jancovic is a specialist in Parkinson’s and movement disorders. After a thorough exam, he affirmed the PD diagnosis but decided to completely change to my medications. Within two days after this appointment my symptoms diminished, and my sense of self returned.

I have retired from work and filed for disability because Parkinson’s has affected my mental capacity, especially when it comes to dealing with stress. Despite this, I am determined to not allow Parkinson’s disease to define who I am.

I do everything I can to exercise and stay active. In the last four years I’ve hiked to tops of mountains in Colorado, taken up long range rifle marksmanship at 1,000 yards or more and continued with my love of Argentine tango. I have also put 1,000 miles in my bicycle in the last three months, and I do not plan on stopping.

I found out about the Parkinson’s Foundation while searching Facebook for Parkinson’s-related groups. I have started looking through the resources on their website for support as I continue to navigate this disease.

My best advice is to live life day by day — and sometimes minute by minute. You never can tell what will happen next.

Find a good a PD care team. Know that there will be good days in there, too, and make the most of them.

Here’s to a cure!

You are not alone. Find expert Parkinson’s care in your area.

From Gatorade to The Quaker Oats Company, I’ve worked at some of the biggest companies, focused on clinical research that links exercise and nutrition parameters in health and athletic performance. As a nutritional biochemist and scientific researcher, I worked to understand how our bodies work and what happens when they stop functioning the way they should.

In 2013, I received the sobering news that I had Parkinson’s disease (PD). Like most people with PD, after I was initially diagnosed, I wanted to understand the long-term implications of this  progressive disease. As a former researcher, I began searching for answers.

My initial thoughts and feelings were about how my health would change and how PD would affect my family. I worried about keeping up with my daily routine, driving my sons to practice, working around the house or golfing — things many people take for granted.

Over the last 10 years, I’ve grasped how PD affects me, my family and lifestyle. My PD is tremor-predominant, but I deal with slowness and other non-movement symptoms, like low energy and sleep disturbances. It continues to be a challenge, but I’m taking it one day at a time.

Tracking Progress

Just over a year ago, my engineer son began working for Rune Labs, a company that created an app called StrivePD that helps people with PD track exercise, symptoms, medications, treatment side effects and sleep behavior. As a former PhD-level scientist, I can appreciate the data and its insights. My son asked me to try the app, so I did.

My outlook on PD has changed after using the app for just a few months. I feel I have more control over my disease, allowing more time to do things I love, like spending time with my family. It has improved my medication timing, workouts and dietary decisions. Since it links to my AppleWatch, it takes no conscious effort.

While Parkinson’s remains a struggle, StrivePD has helped me realize the importance of exercise and how it dramatically reduces my mobility issues. It motivates me to stretch, lift weights, complete core workouts and visit my physical therapist twice a week. Exercise has dramatically reduced my symptoms and helps me control them.

Looking Toward the Future

As I continue to use StrivePD, I plan to share my data with my clinician to better understand how my daily routine affects my disease, specifically exercise and how I can improve my energy and sleep. It can be daunting to encapsulate months of my disease experience in a one-hour visit. StrivePD helps capture symptom changes and a bigger picture of how things are going. I am proud of how my son continues to help build StrivePD so that people like me can better manage this disease.

Energy with exercise. After a decade of dealing with Parkinson’s, that has become my mantra. Exercise gives me the energy to go about my day and helps keep me alert. I urge my fellow PD community to have a goal and not let this disease control you.

Learn more about Parkinson’s and Exercise. Explore our Fitness Friday exercise classes you can try on-demand from home.