Diagnosis Shock
The months following my diagnosis were difficult. I was basically in shock. How does a healthy 46-year-old have a disease that older people get? How do I adjust to having a progressive neurological disease for which there is no cure?
I felt very alone.
My wife and I talked a lot, but it was hard for her to relate completely to what I was feeling. She didn’t have the diagnosis.
Eventually, I met with a counselor who helped me accept my diagnosis by helping realize I was still me, now just with PD.
Realization
Something my Movement Disorder Specialist (MDS) told me really struck a chord. She told me to do three things to live well with PD: 1. Take your medicine on time; 2. Exercise, exercise, exercise; and 3. Keep a positive attitude.
Numbers 1 and 2 were easy (well, relatively easy). I thought a lot about number 3, and as I moved through the acceptance process, I began realizing I had the potential to help others to feel less alone as they went through their own acceptance process. My doctor even asked me if I would mind speaking with some of her other patients.
I quickly realized that helping others could be my way toward a more positive attitude, and helping myself.
She also asked me to be part of a team to develop PD Camp, basically a retreat for people with PD and their care partners. Working with the chair of our local PD support group, the team came up with an agenda and did a small pilot camp. The focus of the camp was to encourage participants to accept their PD and live their best life.
We have our third full scale camp this year. Attendance for the first two was a sell out. Being part of the leadership team for this camp confirmed to me that I could help others cope with their PD.
Things really took off when we founded Rock Steady Boxing Peoria. I quickly became a resource for people as they joined class and found myself onboarding everyone that joined our program.
New Focus
I found that my new focus, namely, helping others, helped me keep positive about my own disease progression by focusing on mutual successes. Additionally, helping others cope helped me not fear my own progression. The more people I talked to, the more it became obvious that everyone is different. Just because someone struggles with initiating a step didn’t mean I necessarily will. Furthermore, it did no good to worry about it anyway. As Michael J. Fox says, focusing on the worst case scenario just means you live it twice if it eventually happens.
Now I focus on keeping positive, taking my meds on time, and exercising.
Of course, I don’t want anyone else to feel how I felt in those first few months following my diagnosis. I know I can’t take all their pain away, but I am compelled to help them understand that it is going to be OK, that they are not alone, and that we’re in this together.
Coaching others in our boxing programs brings me immense joy. I get a front row seat to the boxer’s own joy when he or she accomplishes a physical task, such as jumping rope, which they previously viewed as almost impossible. Their newly empowered spirit is contagious.
Some boxers struggle for weeks trying to jump rope. For two in particular, it took a while to learn. But one day I came up with the idea of turning the rope with a partner, kind of playground style, and it worked like a charm!
We ring a boxing bell every time someone does something special or sets a new personal record. Ringing the bell that day was something special for me. I think they felt the same kind of pride in themselves that I felt for them.
Parkinson’s likes to take control of your body and your confidence. While we can’t stop its progression, there are tangible things we can do to help slow its ability to take over our lives.
Although exercise is clearly the biggest of those things you can do, what has surprised me is how much helping others has helped me keep a strong, positive mental attitude, which, I know also helps keep Parkinson’s at bay.
Memorable Moments
Possibly my favorite and proudest coaching moment happened a couple years ago, when one of our youngest boxers walked backwards by herself on a 2×4 piece of wood (our “balance beam”). Struggling with her balance, the thought of walking backwards was beyond her wildest dreams. For a couple of months, I held her hand many times as she built confidence with each attempt. When she walked across the board for the first time on her own, the smile on her face was priceless! She texted me a little while after class that she had phoned her father on the way home and told him about her huge accomplishment. He had tears of joy in his eyes while listening to her tell her story. My eyes still well up, too, when I think about it.
Another one of my favorite experiences was when one of our longtime boxers entered hospice care. I found myself going to visit a couple times a week and walking him down to the speed bag/ heavy bag he got the assisted living center to install in their workout room. It took a long time to make the walk, and we shared stories and meaningful time . We only spent 5 or 10 minutes in the workout room, but it was exactly what he needed to feel a sense of control and normalcy in his life. One day I taught him a new skill on the speed bag. After some practice, he got the rhythm down, in spite of his weakened state. I took a quick video, showed it to his wife, and got to witness in her eyes deep love for her husband as she counted out the rhythm along with him, watching him be himself again.
My Life’s Work
I cherish sitting and talking with boxers or their care partners before and after class. People seem to feel really comfortable opening up to me, and I lend an ear about whatever is on their mind.
I recall a boxer being very anxious about a long flight coming up. We talked it through and he left convinced he could do it. He just needed encouragement from someone else. We often trade medicine or symptom stories during this time, too.
It helps so much knowing you are not alone.
People who knew me before my diagnosis, but haven’t really seen me much since that time, are sometimes surprised by my new focus. I guess it was always in me, but it needed a reason to come out. Michael J. Fox talks about quitting his day job to find his life’s work. There is tremendous wisdom in that statement, and I strongly believe I have found my life’s work.
I realize personal advocacy is not for everyone, but I wouldn’t have thought it was for me, either. Who would have thought that becoming a fitness coach would mean so much more than helping people with PD stay fit. It has become a platform for developing a positive community. Being a fitness coach may not be right for you, but I encourage you to ask yourself if there are things you enjoy doing that might help others with PD. Like me, you might just surprise yourself.
And don’t underestimate the power of the positive. Feeling positive about yourself can transform your outlook, help others, and affect how well you live with Parkinson’s.
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Photo by sydney Rae on Unsplash
Ned Neuhaus earned a Bachelor’s in Accountancy from the University of Illinois, is a CPA, and enjoyed a successful career in accounting and business management before retiring in 2015. He is currently is a certified Rock Steady Boxing coach and volunteers his time at Rock Steady Boxing Peoria as well as with local Parkinson’s support groups and Team Fox. Ned was diagnosed in 2013 at the age of 46.