Bob Miller on Advocacy

An interview with Bob Miller on Advocacy on October 17, 2023 by George Ackerman, Ph.D, J.D.


I was in education for 39 years, retired early to become a full-time care partner for Victoria. Started out as a teacher/coach and moved into administration, finishing my last 10 years as a district Superintendent.


Please tell me a little about your background.


We will have been married for 50 years in May of 2024. As mentioned, I have been an educator for 39 years. Also served on the Board of Directors of the Iowa Chapter of the American Parkinson’s Disease Association for 9 years, serving as Chapter President for the final six. Victoria was also on the Board for 10 years.


Can you tell me more about your advocacy?


I believe that the people of Iowa deserve to have educational programming throughout the state, not just in the urban areas. My goal as president was to have a support group in every one of the 99 counties in the state and to create a brain registry for additional research and information. Since we moved to the Spirit Lake area, Victoria and I have been instrumental in creating a conference for rural Iowans in northwest Iowa. Our first year we were hoping for 30 people, and we had 120 so it proved to us that people want and need more information on a cure and living well with PD.



What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?


My passion is to find a cure. I believe that (although I have no substantial proof) the pharmaceuticals make more money treating symptoms as opposed to doing research to find a cure. I am becoming more interested in what the research foundations are doing as they seem more inclined to find a cure. I became interested when Victoria was diagnosed with Young Onset in 2003.


What type of goals do individuals with Parkinson’s have when seeing your advocacy?


I believe people see our positive attitude and feel like they can mimic that attitude. We travel and stay active, as evidenced by our bike trip to southern Minnesota this past summer and followed up by an Alaskan cruise this fall. People see that we can do it after 20 years with PD and they can follow as well.


What type of training and how long are the programs?


We do not have any specific programming, but we have spoken about our attitudes with many support groups and several times at the Iowa Conference presented by the Iowa APDA.


What effect can your advocacy have on an individual with Parkinson’s?


We hope that people realize that being diagnosed with PD is not a death sentence but a nuisance disease that will always be there but that you can still live a life worth living.


What would you like to see as a future goal for your advocacy?


To continue to reach people in rural Iowa who might not live close to an urban area where there are more services and programming.


What events do you participate in?


We participate in our local support group here in Dickinson County as well as plan and execute our Northwest Iowa PD Conference. Over the years, we have participated in Delay the Disease, Rock Steady boxing, dancing with PD, singing groups and research.  Plus, Victoria has had DBS in 2018 and again in 2019. She developed an infection in the first surgery and had to have it all taken out, wait a year, and do it all over again. This helps with her tremendous “can do” attitude.


How does your advocacy also assist caregivers?


One of the programs I presented at the state conference was how to become a great care partner. It was well received and as a breakout session, had an overflow crowd. I believe people want and need to know how to do this stuff. There are not many places where you can get this information, certainly not many of the “official” organizations. The foundations are more likely to have care partner information than the organizations.


How can someone get in touch?  What is your website?


Our email address is: and my phone number is (515) 443-6138. We do not have a website.


How can others also become advocates for awareness?


I think the main thing is to make a decision to become an advocate. It must be a conscious effort to change attitudes and create positivity towards living with the disease while advocating for finding a cure. I believe Congress must pass the bill that has been introduced but I worry that the farming lobby is too strong, powerful, and rich.


If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?


This quote is credited to basketball coach Jim Valvano and his bout with cancer, but we have used this quote many times: DON’T GIVE UP, DON’T EVER GIVE UP.