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Toby’s Deep Brain Stimulation for Parkinson’s Disease

Toby had lived with essential tremor in her right hand for more than a few years before meeting Michael Rezak, MD, PhD. At their first consultation, he diagnosed her with Parkinson’s disease

“I remember going out to the parking lot, getting in my car, calling everybody, letting them know,” Toby recalled. “And I said, and we’re not going to talk about this again.” Toby wasn’t going to let this affect her life and for a long time she was successful, her symptoms were well-controlled with medications and she could keep up her exercise, travel and work.

But Parkinson’s disease is progressive – it develops, worsens. Then, the “wearing off” began – the medications no longer worked as well as they once did. “Slowly but surely, things that I took for granted, that were so easy for me to do, became much more difficult, more tedious,” Toby explained. “My life required huge amounts of planning. Lists of when to take your medicines, lists of when you’re supposed to eat.”

Toby had deep brain stimulation surgery (DBS) to treat her worsening symptoms. Electrodes on the left side of her brain keep the right side of her body under control, but now her left side has become symptomatic. She and Dr. Rezak are discussing a second surgery. Still, it’s hard to wrap her head around the disease coming back.

“I never gave any thought that this could happen. I was aware, but the results I had were so great and I was so lucky that I just thought, this is a minor distraction, I’m out of the woods and I’m fine,” Toby said. “I did not expect the progression to happen as quickly as it did.”

Through all of this, Dr. Rezak has become like family to Toby. “I couldn’t imagine a doctor being more attentive,” Toby said.

“Everyone, from the therapists who took me through cognitive testing to the people who gave me the MRIs to Alison Monette [RN, BSN, MS, and DBS program coordinator at Northwestern Medicine Central DuPage Hospital] who I cannot even say enough good things about, who promised me that she would never leave my side during the surgery except to go out and tell my family how I was doing. You know those things made me confident I was surrounded by only the best people. And because of that, I wasn’t afraid.”

Toby has always been involved in fashion and art, as a designer and store owner, helping out in some way. But Parkinson’s disease made it all more difficult. She couldn’t commit to working shifts and she began to realize she would have to give up certain things she considered part of her identity. Drawing became too hard, and she was frustrated.

A decade into her diagnosis, Toby is no longer the person she was ten years ago. She is, by her own admission, more patient, more understanding and more grateful. She has evolved from who she was – the model, the storeowner – and she has come to embrace the changes. That old life was incredible, but those aren’t the most important things in her life.

“Has Parkinson’s taken things from me? Absolutely,” Toby said. “Has Parkinson’s given me things? Absolutely. It’s really strange to have a disease and find positive things that you’ve received from it, but it’s a fact. It teaches you what’s important, how you want to live your life. Sometimes I don’t think I would trade it in.”

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