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  • Ned Neuhaus

A Different Challenge

Meters Rowed: 102,674

Calories Burned 5,732

Times I felt like I wanted to quit 0


Today is a big day. I passed through the 100,000 meter mark on my journey to a million. I created this blog to talk about the physical challenges I take on to challenge Parkinson’s. Today’s achievement got me reflecting on what a challenge my diagnosis was to accept.


Challenges

As a student in grade school with a late September birthday, I was always one of the youngest and smallest kids in my class. It never bothered me much, I was almost always able to participate in the things I wanted to, both academically and athletically. Somewhere along the line, I developed enough confidence in my abilities to “fit in” and in some cases, be a leader.


While certainly not the only challenge I encountered in my younger days, school is a good example of my experiences with challenge. As a first born, I am a “rule follower” and, as such, getting good grades in school was a big part of my childhood identity. I am fortunate that most academics came relatively easy to me and I never struggled with getting good grades, nor did I have to study particularly hard to get the grades I wanted. When things did get a little challenging in high school (physics, calculus), I was always able to find a friend who I could work with to understand what I was missing.


I always viewed getting good grades as a foundation for future success. This served as a challenge for me, one that I enjoyed. I vividly remember everyone telling us as we were getting ready to be in high school that it would be much harder than grade school. It sounded very intimidating. Once we got there, I remember thinking “this is not at all as hard as everyone said it was going to be”. Not to say I didn’t have to apply myself, but the fear tactics had been overblown.


Work after finishing my college studies seemed to be a lot like school, I worked very hard when I needed to, and I was afforded leadership opportunities relatively early in my career, never feeling uncomfortable being young and in a leadership position.

If I am honest, each new level at school or work carried new challenges that were definitely harder at times, but manageable. I was confident in my ability to take on challenges.


What is this?

My Parkinson’s diagnosis required more respect and deep thought than anything I had encountered in my first 46 years. I am fiercely independent and self-sufficient. I was now facing a future where this was likely to change. I am terribly impatient. Parkinson’s demands patience with everything you do or say 24/7.


This was different. I could no longer rely on my natural ability to succeed. Natural ability had always been enough … I had to look at this with a new approach. There was no metric of success. In school, I knew I was doing well when I got an “A”. At work, getting selected for a big project, getting a promotion or a good review defined success. What defines success when living with an incurable, progressive neurological disease?


I was terrified to appear weak or unsure of myself. My work often required me to be in front of people, something that had never bothered me. Now, I found myself afraid someone would see my tremors and think I was nervous. I thought, “maybe I should just tell everyone”. I was then terrified that people would pity me or feel sorry for me … somehow, that was even worse than them thinking I was nervous.


I have never been a deep or philosophical thinker, like the truly brilliant people I admire. However, I can think logically, breaking down issues and understanding impacts of variables very quickly. I started to break down Parkinson’s into what I could and couldn’t impact.


What to do?

That analysis led me to a very simple result: I needed to reduce stress in my life and exercise a lot more. It was almost a two for one. High stress seems to accelerate the disease and intense exercise slows the disease. Maybe things are going to be ok.


Parkinson’s is like no other challenge I have faced. It is relentless. It is never not there and it is unlikely it is ever going to go away (barring a breakthrough in research). Parkinson’s demands respect and cannot be ignored, the consequences are too high.


What does it all mean?

All of this sounds terrible. It really isn’t. I think it is important to share some of the stark realities because it challenges millions of people around the world. It also is not well understood by the masses because people really haven’t discussed it in the previous centuries people have lived with Parkinson’s.


I live a very good life. I am able to do everything I want to do. That may change at some point, but I don’t dwell on it … I really don’t even think about it. It does me no good to focus on something that may or may not happen, that is wasted energy. The dopamine I have is too precious to waste. I need to put it all to good use, focused on things that are helpful or enjoyable.


Every day, I get better at the challenges living with Parkinson’s brings me, and I will continue to do so.

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