I made the right decision - which led to a great opportunity!

What about Bob?

As I began to write a post about my recent opportunity to engage with the U.S. Congress on behalf of the Michael J. Fox Foundation (MJFF), it occurred to me that I had not posted an update about my health since I announced my departure from Slalom in April 2023. In that article, I shared that I was “retiring” as a result of my Parkinson’s Disease diagnosis in late 2020.?

Looking back over the past 8 months, I know that I made the right decision - as my health has stabilized across several PD symptoms. Although several symptoms have progressed because that is just the reality of Parkinson’s, I still believe it has shown positive outcomes. It is still very weird and I still have problems saying I have "retired." I miss the work (and yes, even the chaos) but I mostly miss the daily interactions with colleagues and customers.

People often ask what I do with my time. Surprisingly, I seem to stay busy. I am engaging more with our nonprofit (www.warriorprincess.org). I also spend more time at the gym (a key requirement for anyone with PD). I am planning to join Rock Steady this month - which is a special Parkinson’s program that uses boxing to engage the mind and the body. To stay engaged mentally, I have written for industry publications, written many podcast scripts, and I've even started the outline for a book about what I learned from my daughter as she fought stage-4 breast cancer (think memoir through the lens of my daughter's warrior-like fight for more than four years). My goal is to keep writing and engaging where possible to help slow the cognitive decline (also strongly recommended by my doctor).

Through it all - I have had friends and family rally around me. I am especially thankful for the calls, emails, and texts from friends - and hope to stay engaged even more this year.

Representing PD patients for MJFF

Now for the original story about an amazing opportunity I had several weeks ago. It reminds me that even out of a very dark situation, can come “light.”

I had a conversation with my US Congressman, David Kustoff. While we don't agree on most of his political decisions (I’m a blue voter in a red state), I still respect him as my designated representative. And, I need his support on a very important bill that could make a difference in my life - and potentially in the lives of the more than one million people in the U.S. with Parkinson’s.?

When I was first diagnosed in 2020, I reached out to The Michael J. Fox Foundation for Parkinson's Research for information and support. I quickly became involved in several research programs. I also signed up to participate in any legislative opportunities. To my surprise, this led to a conversation several weeks ago with the legislative representative from MJFF.? He asked if I could be on a call with Mr. Kustoff to discuss the new Act to End Parkinson's. The bill was modeled after the highly successful Hope for Alzheimer’s Act, which has had a profound impact on research and new drugs to combat Alzheimer’s in the U.S.

He originally said the call would be the congressman’s staff, but Rep. Kustoff actually joined the call himself. He was thoughtful, inquisitive, and engaged. The MJFF representative and I talked with him for almost 30 minutes. Although I stumbled with words, I was able to tell my story of diagnosis and treatment.

I received a note two days later from his staff saying that he added himself as a sponsor of the bill. Late last week, I received an email saying that the bill passed in the House before the holiday recess and now would move to the Senate. While there is a lot of work left to do before it becomes law, it was a very special experience to be involved with the process and to see the success so far.?

Going forward, I now have the opportunity to be the legislative representative for MJFF in the state of TN. I am proud to represent an organization that has helped me understand the disease better. And, to have a small part in working alongside the organization, in their efforts to ensure research continues to find treatments that could lead to a cure one day.?

I recently read both of Michael J. Fox’s memoirs - they are both great reads. I was both inspired by his attitude and focus, but also a bit terrified for what could be a part of my future as the disease progresses. ??

Thanks for reading such a long post. I just wanted to share an update to my LinkedIn Community - about what was a very positive event in my life.....

*I am including a screen grab from the call - not sure why I look like I was asleep!