Kerry Townsend, 48, suffers from hemiplegic migraine, a rare brain disorder that causes an everyday cycle of migraines and paralysis. Townsend traveled to Dallas on Oct. 29 to undergo a new surgery to treat the disorder.

Sitting on the back of a rolling walker in her studio apartment, Kerry Townsend looked toward the floor and nervously slapped an elastic bracelet against her left wrist.

After a few minutes of thought, she looked up, smiled wide, and told a secret: She wants, more than anything, to drive a motorcycle.

“I want to go fast and feel empowered,” Townsend said. “It sucks to be so frail and vulnerable and slow. It would be so liberating.”

For Townsend, a 48-year-old single mother of three who suffers daily from debilitating migraines and paralysis, having the ability to drive a motorcycle — an activity that takes balance, good motor skills and tolerance for loud noise — would mean she could do everything else that she’s missing out on.

Kerry Townsend, 48, suffers from hemiplegic migraine, a rare brain disorder that causes an everyday cycle of migraines and paralysis. Townsend traveled to Dallas on Oct. 29 to undergo a new surgery to treat the disorder.

She daydreams of working a steady job; of holding her two young grandchildren without supervision. She wants simple things, too, such as the energy to both take a shower and go to the grocery store in the same day, or to eat bacon or chocolate without it triggering pain.

They’re what she calls “scary hopes” — things both large and small that she’s been hesitant to verbalize, even to herself.

“People talk a lot about hope, that hope keeps you alive, and there’s no doubt about it,” Townsend said. “But you have to temper that because if you set yourself too high, it creates a very high place to fall from, and you really, really don’t want to fall from there. Having a chronic illness is devastating enough.”

For the first time in about five years, Townsend is letting herself believe there will be a time when she’ll live without pain.

On Thursday, Townsend, her youngest daughter, Peyton, and her Morkie dog, Mindy, left Lawrence for Dallas, where she underwent a preliminary procedure for a surgery that has been an effective treatment for some people with the same rare diagnosis as Townsend.

One KU Medical Center neurologist described the surgery as “experimental” and a “last resort.”

‘Wheel of torture’

Townsend woke up the morning of Nov. 7, 2010, unable to speak or move the right side of her body. She was taken to the emergency room. Doctors thought she had suffered a stroke.

Dr. Nancy Hammond, a general neurologist at KU Medical Center who treats people with migraines, said that’s typical with the onset of hemiplegic migraine, a rare and severe form of migraine with which Townsend was later diagnosed.

“The first time having these, people usually go to the ER because they think they’re having a stroke,” Hammond said. “It mimics one.”

Though migraines are common — affecting about 20 percent of the adult population — people suffering from hemiplegic migraines account for less than 1 percent of the population, Hammond said.

Townsend’s hemiplegic migraine has evolved into a chronic illness. She’s also developed dystonia, a neurological movement disorder that affects her ability to walk.

Every day, she moves from having stroke-like symptoms, such as paralysis, to a migraine, which can last anywhere from 20 minutes to 24 hours, and then a crash — a cycle she’s dubbed the “wheel of torture.”

As Townsend tells it, she’s lost a lot in the past five years.

Townsend graduated from Kansas University with a religious studies degree six months prior to when the first hemiplegic migraine hit. She had been slated to start the St. Luke’s interfaith chaplaincy program.

She gave that up, and she lost her home, savings and sense of personal safety, she said.

She’s sold almost everything — including a prized bicycle — and moved into the tight studio apartment off Massachusetts Street where she currently resides.

The one room is filled with furniture — and color, mostly purple (purple curtains, bed canopy, a half dozen purple lanterns). It’s her hideaway, where she sometimes has to hole up for days at a time to deal with a vicious migraine cycle and avoid triggers.

“I used to be a strong woman,” Townsend said. “I owned a house as a single parent. I graduated at the top of my class; I graduated with honors, with distinction. I raised three kids at the same time.

“You just don’t want to see your body or the person you know as your former self get taken away. It whittles away at you,” she said. “That’s why this surgery is so important.”

Since she was first diagnosed, Townsend has tried a litany of treatments, including 14 different medications, as well as nonmedical remedies such as acupuncture, massage therapy and chiropractic care. At a friend’s suggestion, she tried marijuana.

Some things have worked.

She’s on painkillers, has Botox treatments every 12 weeks and keeps to a no-grain, no-dairy, no-soy, no-caffeine diet.

Nothing so far has completely stopped the symptoms, and Townsend’s neurologist has told her she will never go into remission.

Her upcoming surgery is “a last-ditch effort,” she said. “I want the miracle cure.”

‘The last resort’

Townsend was scheduled Friday to undergo the preliminary surgery at Reed Migraine Treatment Center in Dallas.

In plain terms, the surgery involves connecting stimulators to nerves in the forehead and the back of the head, near the spine, Hammond said. A rechargeable battery is implanted near the hip, and the patient uses a control to shock the nerves.

A 2014 case study by the surgery’s creator, Dr. Kenneth Reed, and available at the U.S. National Library of Medicine, states it has been “found to be a beneficial therapy” for migraine patients, but its potential with hemiplegic migraines has not been tracked.

The study followed four hemiplegic migraine patients, all of whom were said to have much fewer headache days and less — or no — hemiplegia (paralysis on one side of the body) after the surgery.

Hammond said there’s continued debate in the headache neurology field about the viability of the procedure.

“It’s fairly new, and I would classify it as experimental,” Hammond said. “From my standpoint, I would say surgery would be the last resort, for someone who’s tried everything before.”

Townsend will wear a temporary stimulator for three days. She’ll come back to Lawrence on Tuesday, and, if everything goes as planned, head back to Dallas later this month for a permanent implant.

Though no one has guaranteed the surgery will put her in full remission, that’s what Townsend is hoping for.

She reads the Reed Migraine case study repeatedly, especially a section about a 50-year-old business owner who, when diagnosed with hemiplegic migraine, became bedridden and had to sell his businesses.

According to the study, he had resumed a normal lifestyle and owned two companies several years after he had the procedure.

“I read that story all the time, and I’m like, ‘Oh my God, I want to go back to work so bad,'” Townsend said. “I want to be him. I want to be him so bad I can hardly stand it.”

Townsend’s Medicare is paying for 80 percent of both the preliminary and permanent procedures, but she’s required to pay approximately $12,000 up front.

To gather the money, she set up a GoFundMe account and has auctioned off some of her remaining valuables, including a KU men’s basketball signed by the 2013-2014 team.

Going into it, she said she’s scared, mostly that the surgery won’t work. But, for the most part, she’s excited, she said, and her mind drifted back to motorcycles.

“You have to be able to operate your hands well and your feet, and your body has to be able to operate the machine underneath you,” Townsend said. “It’s a weird goal, but that will be the first thing I do.”