Heels On, Head Up, It's A New Day
By Tonya Walker
What made you decide to pursue DBS?
That is an interesting question, because it was a long process for me. When I was initially diagnosed with Parkinson's Disease (PD), my neurologist spent a considerable amount of time discussing treatment options with me. I recall that at the time he was explaining Deep Brain Stimulation (DBS) I scoffed at the idea of brain surgery. I thought to myself - “That’s crazy! I’m not having brain surgery!” Here I am eight years later with two DBS procedures under my belt. Looking back, I think I was crazy to not consider DBS earlier, but you have to be ready for it. How do you know when you’re ready to have a hole drilled into your head while fully awake? In the words of my neurologist – “you’ll know.” And, I did. Once I reached a point where brain surgery was more appealing than continuing to live with the symptoms, I was ready.
Was the DBS surgery painful?
The surgery itself was not painful. Post surgery my neck was sore where the wires were tunneled down my neck to the device in my chest. At first I thought I was doing great – only taking Ibuprofen and Tylenol to manage the discomfort where the incision was on the side of my head. I was ready to shred my prescription for Percoset, and then it hit me like a ton of bricks – the pain in my chest where the device was implanted was excruciating. Honestly, I wanted to rip it out of my chest. There was so much pressure on my collarbone as the device was trying to find its’ “home” in my body. The nurse attributed the pain to my petite size. At the time, I had very little body fat (note: this is currently not the case) and the device did not have a lot of room to settle in.
What got better after DBS?
Everything. Really. It was an almost indescribable life-changing experience. Psychologically and emotionally, I felt like I did before PD. Even my dad observed that he could see the “sparkle” in my eyes again. He was absolutely right – I had drive and motivation again.
What were you able to do after DBS that you couldn't do before DBS?
To help you better understand the improvements to my life after DBS, I want to share a journal entry that I wrote shortly after my first surgery:
To give you an idea of how the disease affected me here are some of the little things that I can now do, but was unable to do prior to surgery. The little things that I will never again take for granted:
- The ability to hug my husband and child with both arms instead of using only the right arm.
- The ability to type with both hands. It is amazing how much more productive one can be when you can use both hands. Similarly, I was able to type a text message using my left hand. Also much faster to text with both hands.
- Waking up and being able to get out of bed when I want to; Not waiting for the meds to kick in so I can walk.
- Having the ability to sit/lie still. Never underestimate the luxury of being able to sit still.
- Having a pedicure whenever I want to instead of timing it around my medicine schedule. Even when I tried to time it right, my foot would move so much it was nearly impossible for the lady to paint my toe nails.
- The ability to run around with my son, walk with him while he rides his bike around the neighborhood or do any other physical activity he wants me to do without having to wait on my body to cooperate.
Of course there are many other things, but hopefully this list will give you an idea of how life-changing this surgery has been for me and my family.
What got worse after DBS?
Absolutely nothing! With that being said, I realize that not everyone has a great experience with DBS. Like with any medical procedure, the results vary for each person. Anyone considering DBS should speak with their doctor to determine if they are a good candidate for the procedure.
What could you do before DBS that you aren't able to do after DBS?
Ride roller coasters with my son. Well technically pre-DBS my son was not tall enough to ride roller coasters, but if he was then I could ride with him. When he finally was tall enough to ride Disney World’s Space Mountain, I didn’t think twice about riding with him. Afterwards I thought “maybe that wasn’t the most brilliant idea.” I forgot how the sudden movements of the ride whip you around. I have since excluded roller coasters from my theme park adventures. Looks like It’s A Small World and spinning Tea Cups are in my future - but I can live with that.
Did you have any complications from DBS?
Fortunately, no. I am incredibly blessed to have a wonderful team of doctors and nurses at the Mayo Clinic in Jacksonville.
Do you have regrets about getting DBS?
No. I would do it again. In fact, I did.
How has DBS changed you personally?
I truly feel like I got my life back. DBS brought back my “fire.” I finally had the energy and drive to do things again. Pre-DBS I did not tell people outside of my family and closest friends that I have PD. I was living in denial. DBS made it real. It’s difficult to hide that you’re having brain surgery, so, I started to share my diagnosis my friends and colleagues. Everyone was incredibly supportive.
I now feel a calling to share my story with others. I want to help raise awareness. So few people seem to understand the disease or to appreciate that it affects people of all ages. I want to change the general perception that PD is an “old” persons disease. And, I want to continue to fundraise to find a cure!
What was the best advice that someone gave you about DBS?
My neurologist and some friends in the medical field encouraged me to consider DBS as a viable treatment option. That was great advice.
What advice would you give others considering DBS?
Talk to someone who has actually undergone the procedure. I am more than willing to speak with anyone considering the procedure. I can be contacted via email: firstname.lastname@example.org.
What was your day-to-day life like before PD/DBS and after PD/DBS? My life was unpredictable. I never knew when my body was going to turn into a train wreck in a matter of minutes. Whether it be because I ate something that interfered with the absorption of the medicine, I was stressed, or I took my medicine a little late. Some days my body turned into a train wreck for reasons I will never know or understand.
How did you create as your name the Shoe Maven?
I have loved shoes for as long as I can remember. My family members recall that, even at a young age, the first thing I did when I greeted someone was look at their shoes. I would compliment them on their shoes and promptly ask if I could try them on. As the disease progressed, my balance was compromised and I had to forego stylish heels in favor of more stable flats. The benefits of DBS included improved balance, and I was soon wearing my favorite heels again. The Shoe Maven is a celebration of the end of my hiatus from heels. The Shoe Maven allows me to share my life-long love of fashion, but more importantly it serves as platform for my dedication to raising awareness about PD and fundraising to find a cure via Team Fox events to benefit the Michael J. Fox Foundation.
Tonya battles Parkinson's Disease in style as the founder of The Shoe Maven and TSM Originals. When she is not styling her latest outfit or designing her latest graphic tee, Tonya is a full-time law professor, a vocal advocate for Parkinson's awareness and actively involved in fundraising for the Michael J. Fox Foundation.