To treat multiple sclerosis, try acupuncture or herbs. Or place your hope in a new oral drug called BG-12. Or one of the other drugs whose ads appear on your browser when you look up MS on WebMD. Or consider restoring your mobility with nutrition. Or snake venom.
While there’s no cure for multiple sclerosis, there’s no shortage of information and advice online about the disease – “good, bad and ugly,” said Deanna Kirkpatrick, 45, an East Wenatchee woman who helps create three podcasts about MS.
She’s trying to be the good. She uses the podcasts to pursue answers – to her own questions and to those of the thousands of people who’ve tuned in online since she helped launch “Multiple Sclerosis – Unplugged” just over a year ago. The shows have been heard nearly 30,000 times by people around the world.
The Internet has changed the way people get information about their health and influenced their medical decisions, especially for people with chronic conditions such as MS.
Among many studies on the subject, a report released by the Pew Internet & American Life Project in 2007 said 86 percent of Internet users with disabilities and chronic conditions had searched for health information online. Of people who’d looked online for health information, 75 percent with chronic conditions said information they’d found in their most recent search affected a decision about their treatment.
There’s room for wariness, said Dr. Roger Cooke, a neurologist at the Providence Multiple Sclerosis Center in Spokane. Some sites are sponsored by drug companies. And patients should keep in mind that MS affects individuals very differently, as do treatments, he said.
“I’ve seen patients over the years do strange things,” Cooke said. “Years ago I had a woman (whose) church raised money so she could go get snake venom treatments for MS. Well, it made her very sick, and it didn’t help her MS.”
Dr. Ben Thrower answered questions about treatments in an “Unplugged” show that aired in October. Now medical director of the MS Institute at Shepherd Center, a hospital in Atlanta that specializes in spinal cord and brain injuries, Thrower previously served as medical director of Spokane’s Holy Family Multiple Sclerosis Institute, now the Providence center.
“From the standpoint of a health care provider, there are many reasons to participate in these podcasts,” Thrower wrote in an email interview.
They offer a way to reach patients without the patients having to leave home, and as treatment options for MS expand, informed patients will be more engaged in their care, he said. Providers can benefit, too, as patients learn about them and seek them out.
“My experience as a neurologist is that the MS community is one of the best informed and interactive groups out there,” Thrower said.
The mountain and the mailbox
Kirkpatrick, who received her communications degree from Washington State University, loved her job as on-air personality “Deanna Jean” at a country radio station in Seattle, riffing for listeners, predicting hits and meeting stars before they became famous. Once, around 1997, she said, she turned down a Saturday evening with Keith Urban, because she had to do a show.
After finally leaving the turbulent industry – her station was bought and sold repeatedly within a few years – she loved her next career in pharmaceutical sales. Specializing in diabetes care, she got to travel and meet people.
To lose her career as her health also plummeted was devastating.
Over the course of days in April 2006, Kirkpatrick became paralyzed up to her earlobes.
“There was a 24-hour period where we didn’t even think I was going to make it,” she said. “Then I was predominantly paralyzed from the waist down, after that 24-hour period.”
Kirkpatrick’s brother, taking her family’s questions online, offered a possible answer: transverse myelitis. Doubtful at first, she said, her doctors came to agree. She had a rare form of the neurological disorder, in which inflammation damages or destroys myeline, the fatty protective coating on nerve cells. Communication is interrupted between the nerves in the spinal cord and the rest of the body.
Kirkpatrick spent six months regaining control of her body – relearning to walk – before returning to work. She said doctors assured her the paralysis had been a once-in-a-lifetime event.
She relapsed six weeks later.
Bedridden again, she was weak, exhausted and in pain. The tasks of daily living out of her reach, her mother and stepfather cared for her while she rebuilt her strength, again: “My mountain was going to the mailbox.”
And, several relapses later, she learned that in rare cases, transverse myelitis represents an onset of a “bigger disease state,” multiple sclerosis – in her case, an aggressive form with a sudden and severe onset.
Unable to do her work, she said, she lost her job in December 2006.
Later than she probably should have, she said, she moved last June from her Seattle-area home back to her hometown of East Wenatchee, where she lives in an apartment 150 feet from her parents’ apartment. The apartment is an attempt to maintain her independence as long as she can while still accessing her parents’ help when she needs it.
‘What’s the bottom line?’
While treatment of MS has advanced significantly, Kirkpatrick said, doctors can only do so much, and patients’ time with them is finite.
“They can show you your MRIs and get you onto disease-modifying therapies,” she said, and direct patients toward physical therapy and prescribe drugs.
As far as learning to function mentally and physically, patients have a lot to learn on their own. Besides offering information, the Internet offers connections. MS can be an isolating disease.
“Really the Internet has been a best friend, for anyone who’s chronically ill,” Kirkpatrick said. “To be able just to reach out and meet and talk to other people, and to hear their stories.”
Closed Facebook groups, for example – with posts readable by members only – also provide a forum for honest, open discussion about bowel and bladder problems, sexual issues and other topics they’d rather not discuss with friends and family, in part to protect them from the “honest brutality of this disease,” Kirkpatrick said.
She met her two “Unplugged” co-hosts through a mutual friend on Facebook. Amy Gurowitz lives in New Jersey, Stuart Schlossman in Florida. “Unplugged” serves as a platform for three shows that delve into medicine and research, highlight individuals with MS and – in “2 MS Chicks” – address everyday life with the disease. A teaser for a January episode of “Chicks”: “Amy and Deanna discuss Deanna’s latest neuro appt. – and do you keep track of your lesions?”
Kirkpatrick uses her iPhone to record shows and her laptop and free software to edit them.
The podcasts offer a forum that seeks to root reliable answers from the chaff – in an audio format, which Kirkpatrick said is important: Many MS patients suffer from blindness or visual disturbances. For Kirkpatrick, it’s blurriness that comes and goes.
The shows often cover topics gaining traction online, including in MS chat rooms. Kirkpatrick said she considers it her job to find answers that will help other patients make their own medical decisions. She includes questions gathered online from listeners.
With her experience in pharmaceutical sales, she’s not afraid to talk to doctors or gauge the importance of a new study.
A volunteer patient advocate for drugmaker Teva Neuroscience – she talks with recently diagnosed patients and health care workers about MS therapies – her connections make it easier to book specialists and researchers as guests.
“I have a lot of questions to ask these neurologists, and so does everyone else,” Kirkpatrick said. “In a sense, I really get to do what I love, and that’s finding the answers – what’s the bottom line?”
For one recent show, Kirkpatrick and Schlossman interviewed Dr. Terry Wahls, the doctor with multiple sclerosis who’s been the subject of buzz for her experience in using vitamins and nutrition to reverse her declining health, enabling her rise from a tilt-recline wheelchair to a bicycle.
Often, Kirkpatrick said, the buzz left out an important detail: Wahls has continued to use pharmaceuticals, in addition to the specialized diet often credited with her improvement, which she confirmed on an “Unplugged” podcast.
The highest rated show so far, with more than 6,000 “listens,” featured a psychologist.
“We talked about suicide, depression, all the hard-to-talk-about topics with MS,” Kirkpatrick said.
Among Kirkpatrick’s favorite shows was one called “Winning the Disability Challenge.”
If getting a diagnosis of MS – and then losing your job and your home and your money, and then feeling on some days trapped inside your body – is like having your house burn down, then “winning the disability challenge” is like rebuilding it, Kirkpatrick said.
“It’s refinding that purpose and passion you have for life,” she said, “what is in your life that makes you want to be in it – and creating that.”
Her new role on the air – on the Internet – is Kirkpatrick’s rebuilt house, she said.
“Setting goals every day for myself and focusing on what I can do, versus what I can’t do, is really important when you have any kind of chronic disease,” she said. “It’s really – the word I’m trying to think of, and this is where my MS brain kind of kicks in – I guess hope. You really hang on to hope.”