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  • Writer's pictureNed Neuhaus

Seven Years

Updated: Feb 14, 2023

Meters Rowed: 250,000

People in the Challenge: 27

Years since diagnosed: 7

There shouldn’t be anything special about the month of March. No family birthdays, anniversaries or special days. But, since 2013, the month of March took on a new meaning. It is the month that I was told “you have Parkinson’s disease”.

I have talked in prior entries about that day. As cliché’ as it sounds, I really don’t think of it much. However, I do think it is important that I have shared what it was like, just so others can know they are not alone.

What I have begun to realize is that it is important for me to take stock from time to time and the “anniversary” of my diagnosis is as good of time as any to do so. I remember a couple of years ago I ran my first 5k in quite some time. I did a Team Fox fundraiser with it. My fundraising letter said “it is 5 years since my diagnosis, I am going to run 5K and raise $5K in recognition of the 5 years”. It seemed innocent enough and had a nice “hook” to it. One person asked “are you celebrating?”.

Three distinct phases

As I look back at the seven years, I would say it breaks down into a few sections:

  • 2013 - 2014 – Gaining acceptance and not being public with my diagnosis

  • 2015 – 2018 – Becoming public and focusing energy on myself (exercise) and people in my local community (Rock Steady Boxing Peoria coach and very active with the Central IL PD support group)

  • 2019 - 2020 – Continuing to focus on my exercise (challenging myself further), pushing my public advocacy for exercise and accepting one’s diagnosis further beyond the local level (Team Fox fundraising through events I chair, Row to Slow Parkinson’s, Challenging Parkinson’s blog, Michael J Fox Foundation events / videos)

Each of these periods reflect personal growth and further & deeper acceptance of what it means to live with Parkinson’s disease long term. If you believe the mortality tables, I will live roughly 40 years with PD. That says I will live longer with Parkinson's than either my grandfather or my father in law lived their entire life!

What's it all mean?

I would love to say I planned all of this progression and it was well thought out. The reality is, I latched onto a few key principles as I came across them and continually evolved my approach to living with PD. If you asked me 7 years ago if I thought Dee Dee and I would be participating a panel discussion in front of 1,000 strangers about living with PD, I would not have seen that as a realistic possibility. I had to make incremental steps along the way.

The three periods are more identifiable as a retrospective vs a prospective. I made a conscious effort to achieve acceptance. It was not easy, it took work and time to achieve (roughly 2 years). That will always be the base that I will build upon. Without true acceptance, nothing else can be achieved, in my opinion.

I am loving my life! There are bad days, for sure. However, they are completely outweighed by the overwhelming support of people inside and outside of the Parkinson’s community.

Seven years is a relatively short time, but at the same time, it is getting harder and harder to really remember what it felt like to not be living with Parkinson’s. That is not altogether a bad thing, I think it is actually good that I can be comfortable enough with my life to not long for the days when I never even had to think about what life might be like with PD.

reaching the 250,000m threshold!

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