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Young Onset Parkinson’s patient shares her 20-year journey

Austin woman had DBS surgery 9 years ago

By Karen Hales, Neurology Solutions Contributing Writer

Roxana Zapata sees her Parkinson’s disease as somewhat of an unwelcome house guest: She’s a little controlling, she usually gets her own way, and she won’t be ignored.

“You can’t get rid of her–the more you try to get rid of her the more she digs her heels in and sits with you,” she said.

Roxana’s journey began when she was 39 years old: Right about the time her career as a sixth grade teacher in Laredo, Texas, started to take off, so did her Parkinson’s disease.

She said she noticed that when her job became stressful, her hand “would start to dance.” For a while she would do the typical things to cover up her condition, such as putting her hand in her pocket so her tremors weren’t visible.

Eventually, though, her symptoms persisted. “It had a mind of its own. It danced like it was playing to music, and started to twitch, and get more so the more stressful I got,” she said.

Thinking that she had a pinched nerve, she went to see a chiropractor, who referred her to a neurologist in San Antonio. An MRI revealed her diagnosis of Young Onset Parkinson’s disease.

Roxana said uncertainty and fear set in after learning her diagnosis. “You don’t know what’s in your future, whether you’re going to have a future, what’s going to happen.”

She did what many people in such a precarious position would do: “I spent the next two weeks on the couch in a fetal position worrying what my life was going to be like.” Curled up on the couch, she said it was the voice of her late grandmother, speaking her native Spanish, who brought her out of her state. “So they gave you lemons. Are you going to sit there and curl up and die and let life pass you by, or are you going to get up and make the best lemonade you can?,” she imagined her telling her.

“I thought, ‘She’s right.’ She came to this country with my great grandmother at 10 years old and did not speak the language, and made a life for herself,” Roxana said. “And that was how they raised us. So I got up off the couch and I never looked back since.”

“There’s a life after your diagnosis, and it’s up to you what you want to make of it.”

Now 59, Roxana said her doctors believe she probably had developed Parkinson’s in her late 20s or early 30s, and she may have carried a gene common in specific populations, including from the Basque region of Spain where her family is from, that is believed to contribute to Young Onset PD.

Deep Brain Stimulation Therapy

Roxana treated her symptoms successfully with medication for several years. Nine years ago she underwent Deep Brain Stimulation (DBS)a surgical procedure that places a neurostimulator in the brain to send electrical impulses to specific areas of the brain–at Massachusetts General Hospital in Boston.

“After my surgery, I went back to the medical school and did a demonstration with the neurologist, and once I turned (the stimulator) off I couldn’t walk or do anything. When you turn it off, it’s phenomenal,” Roxana said. “ When you turn it back on, it’s a whole different world.”

She said some of the best advice she got was to find “up and coming doctors” and a specialist who is up on the latest medications and techniques for dealing with Parkinson’s. She became a patient of Dr. Izor, a movement disorder specialist and medical director of Neurology Solutions, eight years ago and has been on the same dose of her medications since way back at U Mass. She sees her specialist every two or three months to monitor her DBS, and about every three and a half years she has her DBS stimulator battery changed out.

Making Room for Parkinson’s

Roxana continued to teach 6th grade until last December, when she retired after 22 years as a teacher. Today, her outlook on her Parkinson’s disease has become one of acceptance rather than “warring with it,” and she tries to make room for what she considers her roommate.

“I call Parkinson’s my house guest. It’s your body, and it’s a part of you, but you lose a little control over it,” she said. “Every time I go out or meet someone, I have to introduce my roommate. I have to tell what she wants me to tell.”

And in some ways, PD has brought insight and gifts that she says she might not have found otherwise. Things like patience and the ability to put herself out there, to be vulnerable and trusting.

Putting herself out there includes sharing her experience with a room full of sixth graders. Each year she would explain to her students what a PD diagnosis means: That sometimes she would shake. Sometimes she might slur her words or sound like she was drinking. That Parkinson’s is not contagious.

“I would tell them, ‘We all live with something. Maybe your parents have diabetes or you know someone who can’t put food on the table, maybe you know someone who is abused or bullied,’” she said. “‘What I live with is a disease called Parkinson’s. You can’t get it. It’s not contagious. You’re going to see my hand shake, you’re going to see different thingsmaybe I’ll slur my language a little bit. But it’s the disease, it’s not me.’”

She says in some ways their knowledge of her condition helped remove the divider between her students and their teacher and made her more relatable. As a result, “some of the kids would tell me things they would never tell other teachers.”

She has a mantra in the form of the song “Moonshadow,” which reminds her that life is always changing and you have to continuously adjust. The lyrics go:

Jewelry making as therapy
Parkinson’s patient makes jewelry for therapy

And if I ever lose my hands

Lose my power, lose my land

Oh, if I ever lose my hands

Ooh, I won’t have to work no more


And if I ever lose my eyes

If my colors all run dry

Yes, if I ever lose my eyes

Ooh, I won’t have to cry no more

“It reminds me ‘If I can’t do this, I’ll do that, if I can’t do that, I’ll do this,’” she said. “It’s about adapting. It’s a transformation. You lose something, but you gain another.”

Today she does bead work, makes jewelry, works with healing crystals and trained in reiki, a form of energy work. She spends time with her husband and family. She has 14 grandchildren. And she is adjusting to her life as a retiree away from the daily demands of teaching a classroom full of 11- and 12-year-olds.

Reaching out to others with Parkinson’s

She encourages others with PD to find someone who has dealt with the condition for support, advice and understanding, and extended the offer to anyone in the Austin PD community who needs someone to talk through their difficulties and make them feel connected.

“It helps if you can talk to someone who has Parkinson’s and is dealing with it. Find somebody who has had it for a while and talk to them and share,” she said. “Try to forge a friendship so that you can call and ask them what to expect and what’s going on.”

She is thankful that after 20 years with PD she is not in a wheelchair and can still do most of the things she would like to do.

“There’s a life after your diagnosis, and it’s up to you what you want to make of it. If you want a positive outcome, it’s up to you. You have to get in touch, visit with your roommate, share your body with her, and compromise,” Roxana said.

Stay Connected

Neurology Solutions is accepting new patients seeking a specialist in managing Parkinson’s disease, dystonia, essential tremor and age-related movement disorders. To make an appointment, please call 512-865-6310

Stay informed by frequenting Neurology Solutions’ blog, or join Neurology Solutions Movement Disorders Center’s e-mail list to stay up to date on the latest in treatments and how to manage stress, stay healthy and maintain quality of life while living with dystonia, PD and other movement disorders.

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