Our Live Your Passion campaign spotlights individuals in our community who are living their “passions” on and off the court. Each month, we will highlight one of our passion players, so that they can share their inspirational stories with us.
What is your passion and how do you live it?
My passion is boxing! I embraced the sport after I was diagnosed with Parkinson’s. Learning to box through noncontact boxing techniques has given me strength I never knew I had.
Can you please tell us about Parkinson’s disease?
Parkinson’s is a progressive neurological disease, which affects the person physically, mentally and emotionally. The primary motor symptoms are tremor, muscle rigidity, bradykinesia (slowed movement), and postural instability. Fine motor skills such as writing, buttoning a shirt, or cutting food can be affected, as well as large motor skills such as walking, gait, coordination, & balance.
How does it progress?
The rate of progression and symptoms vary depending on the individual. As PD progresses, the person can become more immobile, relying on assistive devices such as a cane, walker or become wheelchair-bound due to impaired coordination & balance which leads to falls.
There are several medications used to treat the motor symptoms of the disease as well as surgical options, such as Deep Brain Stimulation, which has helped many live a better quality of life. There are therapies available, which can help manage the disease better. Exercise programs such as yoga, dance, tandem biking, & noncontact boxing are significantly improving symptoms of those with Parkinson’s. While there are medications, there is NO CURE for Parkinson’s.
When were you first diagnosed and how did you deal with the diagnosis?
At age 30, I noticed a tremor in my right hand. My daughter was 3 and my son was 6 weeks old. I had to sit on my hand at my 6-week postpartum appointment to try to stop it from moving. I was also an RN, and the tremor began to interfere with my work. As I saw multiple specialists over the next 2 years, other symptoms appeared. My walking became more difficult as my muscles were more rigid and I began dragging my right leg. Finally, at age 32, I saw a neurologist who suspected the diagnosis at our first meeting. It was a relief for me to finally know what I was dealing with, but I really had no idea the challenges ahead for my family and I. The diagnosis came with a harsh outlook. My neurologist told me that day that I would be in a wheelchair and unable to care for my children and myself within 10 years. It was quite difficult to hear and in my mind, unacceptable.
How has the disease impacted your life?
I attempted to go about life as usual, but my symptoms began to get worse. I was unable to continue working due to muscle rigidity, and daily freezing. Then I became a single mom. I had a choice. I could allow PD to take control of my life, or get up and fight back! In my mind, there was only one choice. I had to fight back! I heard about a program called Rock Steady Boxing, an organization dedicated to training people with Parkinson’s disease to combat the symptoms through noncontact boxing. I kept doing it until my body began to respond to the forced intense exercise. When my mind and body started connecting again, it was life changing. After about a year, my trainer came to me one day and said, “No one would ever know.” I looked like everyone else. My symptoms had significantly improved.
There are 2 other significant issues, which are a daily struggle. Cognitive function has made a significant impact on my daily tasks, making everything more difficult. Through exercise & especially boxing, this has improved significantly, but I also have learned to use technology and visual aids to my advantage. My other struggle is nutrition and GI issues. As GI absorption is now much slower for me, it is important that my nutrition take priority.
How do you try to bring awareness to Parkinson’s?
Telling my story has been so powerful in spreading awareness about Parkinson’s disease. When I talk to other people with PD, they can relate to something in my story about themselves. I want people to realize that there is something they can do when they are diagnosed with Parkinson’s. Life doesn’t stop after the diagnosis, but it does change. For me, it was a new beginning. A life full of new challenges, at times quite overwhelming, but with support, I have been able to tackle them one at a time. It may not be easy. In fact, it will take a lot of hard work, ability to adapt to changes, and an attitude that won’t let you quit or give up, but you can do it! Be willing to accept help and support from family, friends, and build a strong healthcare team to support all of your needs.
What would you like our community to know?
I would like the community to be aware of what Parkinson’s disease is and is not. It is a progressive neurological disease, which is more than just a little shaking. It impacts every aspect of your life, including relationships with a spouse, significant others, and children. It affects people of all ages. Young people with Parkinson’s are struggling to cope with the challenges of this disease, while also trying to raise young children and continue working. Imagine how difficult it is for a 30-year old mother with PD, struggling to roll over and get out of bed in the morning, and then having to get up and get ready for work. I am grateful there are boxing programs like PD Fighters, a noncontact boxing affiliate of Rock Steady Boxing, which I started 2 years ago with Lead Trainer, Josh Ripley and the team at Title Boxing Club Newbury Park. It has been an incredibly successful program and I am honored to coach these amazing fighters. Ultimately, my goal, and the goal of the Michael J Fox Foundation, is to find a cure for Parkinson’s disease. Joining the efforts of Team Fox and raising money for research is vital to reaching that goal. My hope is that one day I can tell my grandchildren what it was like when people used to have Parkinson’s disease.
What does your health and fitness routine look like living with Parkinson’s?
I do some form of exercise daily because exercise is medicine for my mind and body. I am usually in the gym punching the heavy bag, taking a class, outside taking a brisk hike, or going for a morning run. I have to pay close attention to my nutrition. I usually start with a protein shake, which has helped my GI issues tremendously. It is important that I eat healthy meals and snacks, but also that I am consuming enough calories for all the energy I am burning through exercise. I schedule my meals and snacks and time when I eat certain foods, so that it does not interfere with the intake of Sinemet, one of the medications for PD. Drinking water with lemon has really helped me stay hydrated, which is important due to the side effects, particular dry mouth, of certain PD meds.
What advice can you give others living with Parkinson’s or any other condition?
Exercise is key to living a better quality of life with PD. I take medication every day for Parkinson’s as well as incorporating daily exercise. Hitting the bag in the gym, going for a run, or a hike is medicine for my mind and body.
It is also important to have people in your corner who are supportive of your needs. Start by building a strong healthcare team. Many people do not have access to a MDS or are not aware that they exist. The MJFF has created an online tool to connect those with Parkinson’s to Movement Disorder Specialists and valuable resources. At Partners in Parkinsons, you can search for a Parkinson’s disease specialist, attend a webinar or live event in your area, or connect with an advocate.