An interview with Devi Grinder from tippytoesparky on September 13, 2023 by George Ackerman, Ph.D, J.D.
I started out as a dancer. My parents basically threw me into dance classes when we moved to the United States from Canada. I usually dance five or six days a week. During the week, I had dance classes that started after school and went into the evenings and nights. Weekends I would be at the studio for seven or eight hours. The culmination of all my years of dance came when my little dance troupe was asked to audition for the Thalian’s Ball. There were many dance troupes auditioning, but our troupe was picked! The training was intense. I was at the studio 6 and sometimes 7 days a week rehearsing. We worked with a choreographer who had worked with many different stars. It was grueling. Very long hours and quick breaks for lunch and dinner.
I developed quite the tough skin while working with him. That particular year, Debbie Reynolds was the host and Gene Kelly was being honored. We did a tap number and I got to dance right next to him. Once we were done, we got a standing ovation from the star-studded audience and Gene Kelly couldn’t give us enough hugs and kisses! As I got older, boy crazy set in so I no longer had the drive to dance. When I got into college, I saw on the classes they offered was ballet. I had been out of the dance world for about 7 years. I signed up for it and realized how much I missed the camaraderie of dancers. Fast forward, my parents gave me a gym membership when I turned 19. I also used to take Jane Fonda’s exercise classes at her local studio. Her classes were geared towards dancers, so it was right up my alley. I ended up as a dance major in college and went back to my roots (ballet). I graduated with a BA in dance. Fast forward again to when I became a long-distance bike rider. I participated in the AIDS bicycle ride from San Francisco to Santa Monica. I also started running and ran in many ½ marathons. So, as you see, I have been very active since I was 7 years old. Little did I know that my dance teacher all those years ago, was preparing for me to never give up, even when something seemed difficult.
Can you tell me more about your advocacy?
I have started a Blog all about my personal journey from the moment I heard those 5 little words “I’m sorry. You have Parkinson’s. My entire life just crumbled before my eyes. I am hoping that my experience will help others who are newly diagnosed and overwhelmed. I want them to know they are not alone. I also offer tons of ideas as far as exercise goes that have worked for me. I have also had the DBS surgery twice (long story) and am finally beginning to bounce back.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My biggest passion is exercise, specifically Pilates Reformer classes. I have written entries so far in my blog which explains Pilates and why it is so crucial to slowing the progression of Parkinson’s. I am also a big advocate for the DBS. It has literally given me my life back!
What type of goals do individuals with Parkinson’s have when seeing your advocacy?
To never ever give up. To learn how to advocate for themselves. To educate themselves so they understand what they can do to help themselves and that they are not alone. And about living a healthy lifestyle. I also want to educate them on the pros and cons if considering the DBS (but really there are not any cons).
What type of training and how long are the programs?
Well, I am currently not involved in an organized program, but I have lots to share about why it is important to keep moving. This should be a lifetime goal.
What effect can your advocacy have on an individual with Parkinson’s?
To focus on the good and to help and to educate them about why it is important to consider the DBS. The thought of brain surgery is very frightening, but to fight through that fear and think about how happy they be afterwards!
What would you like to see as a future goal for your advocacy?
I would love to become an Ambassador for the DBS. I would like to see lots of people reading my blog, asking me any questions they may have, and I would really love to see lots of subscribers (right now I only have 35 subscribers).
What events do you participate in?
If you read my blog, you will see how long I was sick between the revolving door of Drs., to getting DBS, to being sick for the last 2 ½ years and unable to do much. I would like to participate in some of the walks. I would also like to participate in the fun activities that some of my Instagram friends are doing!
How does your advocacy also assist caregivers?
By educating patients about DBS, should they potentially go through the process of finding out where or not they are a good candidate for DBS, they will become more self-sufficient and able to do many tasks that were taken away from PD, so it will hopefully take the tremendous pressure off their care givers.
How can someone get in touch? What is your website?
Through my Blog. tippytoesparky.com They can leave me a personal message and I will get back to them.
How can others also become advocates for awareness?
By educating themselves and then by educating others.
What has Parkinsons done to you financially?
How I got past the very poor care I have had, without becoming angry and bitter.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
I have Parkinsons. Parkinsons will never have me.
I don’t refer to Parkinsons as an illness. To me, illness means that you are sick and dying. I refer to it as a condition, one that I am living with.