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Neurology Solutions patient tells story of living with dystonia

Austin woman manages condition with Botox injections, DBS therapy

By Karen Hales, Neurology Solutions Contributing Writer

Phyllis Spivey of Austin noticed an odd thing when she would lie down to sleep: when she put her head on the pillow, it would pull to the right. About a year and a half after she first noticed the tugging motion in her neck, which would also present itself when she was doing tasks during the day–and several months after first complaining of it to her doctor–she was referred to a neurologist who quickly diagnosed her with dystonia. She has been living with dystonia the past 18 years.

Dystonia causes repetitive twisting and sustained muscle contractions of either one area of the body, several adjacent muscle groups or the entire body. The type of dystonia Phyllis has is torticollis, also referred to as spasmatic toritcal. She describes it as feeling like an intense cramp that you can’t relieve. “Take your worse foot cramp that you ever had, where your toes are curling in, and then put it in the side of your neck, and that’s what it’s like,” she says.

Phyllis’ diagnosis came soon after she retired in 1999 while she was living in California. She started botox therapy, where purified botulinum toxin is injected into the affected muscle tissue to relax excessive muscle contraction. She was still able to manage most daily living activities and drive her car.

When she moved from California to Austin, Phyllis became a patient of Dr. Robert Izor, a neurologist specializing in movement disorders and Neurology Solutions medical director. Dr. Izor continued Phyllis’ botox injections and recommended she undergo Deep Brain Stimulation implant surgery, which she did in 2006. In addition to these treatments, she takes supplements including Vitamin C, Vitamin D and probiotics. She also sees a psychologist to manage anxiety.

Phyllis’ pain is mostly alleviated with the botox injections and, although difficult to control, her symptoms are largely managed. She can hold her head fairly straight, but she is unable to use one hand due to dystonia.

Phyllis sees her Neurology Solutions care team every three months for botox and every month for DBS programming, and said she appreciates the level of care and concern they provide. “They’re wonderful people. I can sit and talk to them about anything. If I go to the hospital for any reason at all, they check on me and want to know everything about it. They’re constantly checking my health,” she says. “They’ve got a bunch of nice people at the office.”

Living with Dystonia

Eighteen years after her dystonia first became apparent, she says that she would have pushed her doctor sooner to help identify her condition so “I would have been relieved earlier.” Back when she was first diagnosed, she said she treated her doctors like they were the boss and wasn’t comfortable challenging them. Today she is more likely to question her doctors and advocate for her care.

She advises people who are developing symptoms impacting their life to advocate for themselves until a diagnosis and treatment plan can be found. “If they even have an inkling or a notion, go check it out. It’s worth it. Don’t just sit there thinking ‘I wonder, I wonder, I wonder,’ like I did,” Phyllis adds.

Celebrating her 80th birthday this month, Phyllis is a go-getter. She belongs to a senior center, plays bingo and Bunko, does genealogy and jewelry making and writes poetry. She describes herself as “addicted to books” and tries to keep her mind busy and stay active. But staying active is difficult. Because of her condition, as well as arthritis, she is no longer able to drive a car. She misses being outdoors, fishing and going to flea markets. She barely cooks, and says she can’t make her bed or look up at the sky.

She says her symptoms are worse when she is focusing hard on something or under stress. “Stress sets it off real bad” because her muscles tense up even more.

“Sometimes I have a good attitude and I have to laugh about it,” she said. “I’ll be 80 years old later this month, but I don’t feel it, and I want to get up and do things.”

Advice for Other Dystonia Patients

Here is some advice Phyllis recommends for someone who is diagnosed with dystonia:

  • Listen to your gut. If you think something is going on with your body, get it checked out.
  • Find a doctor you trust, and be assertive.
  • Be informed. Phyllis recommends Neurology Now magazine as a good resource for dystonia research and therapies.
  • Be in control of your treatment and medications prescribed. If something doesn’t feel right, speak up.
  • Have instructions on you in the event of a medical emergency listing all of your medications and details on restrictions related to DBS or other special considerations. If you have Parkinson’s disease, The National Parkinson Foundation offers an Aware in Care Kit® that includes information on what medications can be safely administered and which to avoid, warnings related to patients who have a DBS device, and a Parkinson’s Fact Sheet.
  • Try to stay positive. Someone is always worse off than you.
  • Find things you are able to do that you enjoy. Keep active.
  • Find methods to relax–try yoga, meditation or coloring in a coloring book to alleviate stress.

If you are looking for a diagnosis or seeking another opinion on managing your dystonia symptoms, call 512-865-6310 to make an appointment with Neurology Solutions.

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 and other movement disorders.

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