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  • Writer's pictureNed Neuhaus

10 Years

Every March, I take stock of my life. March may seem like an odd time to be reflective, but it was March 2013 when I first heard those four words "You have Parkinson's disease". This year is special not only because it represents a decade since diagnosis, but it represents a whole new chapter in my Parkinson's journey ... my post Deep Brain Stimulation (DBS) life.


In the past, I broke my journey into three chapters:

  • 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 - 2022 – 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)


(Celebrating just weeks before my diagnosis at the Polynesian resort in Disney)


NEW CHAPTER

While the DBS journey has taken years of gathering information, talking with professionals about the process and potential benefits and talking with those who proceeded me in the surgery. It was in 2022 that I had fully decided to embark on DBS for me (see entries in the DBS section for full details on the decision process, surgeries and programming).


While I am still experiencing frequent changes with my settings as we hone in on the optimal settings for the DBS unit combined with the right levels of medication (a process that can take up to a full year or more), I can see potential for many positive things in this new chapter. While since gaining full acceptance in 2015 I have never felt "down", I feel a new level of optimism going forward.



(walking out of my first programming appointment ... no medication in over 12 hours)


DBS has allowed me to live the last few months virtually symptom free .... something I could not comprehend how it would feel until it actually happened. It has also made me realize how "medicated" I felt for the last few years. Reducing my medications significantly has provided a clarity I honestly did not expect!


It is difficult to find the words to express the emotions that come with such a significant change. I almost have to pinch myself from time to time to make sure this isn't one of those vivid dreams that often come with living with Parkinson's. I don't feel like I am "cured" (because I am not), but a certain weight has been lifted from not experiencing morning disabling foot dystonia and from living my life in 2 hour increments, trying to avoid medication "off" times in scheduling exercise and other activities.


LOOKING FORWARD

My annual "take stock" exercise has me excited for this new chapter in my journey. I have found a new passion: Table Tennis! I play several hours per day, a few times a week. It is challenging beyond my expectations, but it is right up my alley. I am proud of the improvements I have made in the last few months ... I have much more improvement to be made to be a competitive player. I am having tons of fun and have met some great people. Who knows, this could be another advocacy avenue for me in the future!


I realize DBS isn't for everyone. For me, it has been a game changer to date and one that I hope continues to provide symptom relief for years to come. I am beyond thankful for the multiple Movement Disorder Specialists (MDS) that advised me in my decision process, for the surgical team and the programming team that have made my new chapter possible. I can't wait to see what new and exciting things await me and those around me!




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gwenbateman
Mar 16, 2023

A heartfelt and encouraging article. I appreciate that you stress this in an ongoing process that deserves attention and work everyday, but the blessings are well worth it.


Thanks Ned for the example and encouragement you give to others.

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Ned Neuhaus
Ned Neuhaus
Mar 16, 2023
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Thank you for the kind words!

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