Jeannine Crum, 71, uses the Internet to find information about Parkinson's disease. She was diagnosed with the disease two years ago, and she has since become Internet-savvy in researching her condition and studying potential medicines and symptoms. Crum was photographed Thursday at home with her dog Kate.

Jeannine Crumm, 71, was recently diagnosed with Parkinson's disease. She has since become Internet savvy in researching potential medicines and studying symptoms of the chronic disease.

Dr. Steven Bruner of Lawrence Family Medicine & Obstetrics explains to a patient in his office that some people have trouble self-diagnosing using the Internet.

For Jeannine Crum, the Internet is a murky crystal ball.

The 71-year-old Lawrence woman, who was diagnosed with Parkinson’s disease two years ago, uses the Internet to research what medicines she might need some day and the side effects they could bring.

Crum searches to find out whether the changes in her body match with the disease, which progresses over years and affects movement, muscle control and balance.

“It helps me feel more informed and helps me know what questions to ask the doctor,” she said.

But the information, all of which is accessible by a few clicks of a computer mouse, hasn’t always been a comfort to her.

Shortly after her diagnosis, Crum said she learned she could “spend all day” in chat rooms reading about some of the more bizarre cases of Parkinson’s.

“I very soon realized that Parkinson’s is a very, very individual disease and progresses at different rates in different people,” Crum said. “A lot of the things I was reading were depressing and might not be something I ever have to worry about.”

From researching symptoms of the common cold to mapping the progress of chronic diseases, the Internet has changed the way many people deal with their illnesses.

It has altered the patient and doctor relationship to one where doctors are less paternalistic and patients are more questioning and involved in the decision making.

Dr. Bill Weatherford, a family practice doctor at Family Medicine of Tonganoxie, said about 50 percent of his patients use the Internet for medical information.

“Part of medicine has shifted from just giving out answers to helping people find answers,” Weatherford said.

A 2006 report from Pew Internet & American Life Project found that 113 million American adults – or 80 percent of all Internet users – have searched online for medical information. The people most likely to use the Internet for health information are women, those younger than 65, college graduates, experienced online users and those who have access to broadband, the report stated.

The report also found that the typical online session began at a search engine, included more than one Web site and was “undertaken on behalf of someone other than the person doing the search.”

While the Internet has produced a class of more savvy health care consumers, medical providers warn that patients should navigate the Web with care.

Weatherford said a good part of his job has become sifting through the pages of information his patients print from Web sites.

“A lot of people don’t understand medical studies and don’t understand research to know what makes one article good and another article not so good,” Weatherford said.

The good

More than a year ago, Beverly Kyle heard of a new drug that could help control her Parkinson’s disease. It is a 24-hour patch Kyle could wear to stop the ebbs and flows that come with taking medicine every five hours.

However, the drug had to be approved by the Food and Drug Administration first. Kyle kept track of the progress online and was thrilled to read about its release in early May. She’s already asked one of her doctors about taking it.

“You look up the drugs and track them and see what the trials are and how many are being prescribed and what the drug companies are marketing,” Kyle said. “It’s just a world of information.”

In the past three years, Kyle has watched her disease progress after first noticing that her once beautiful handwriting had turned into a shaky scrawl while addressing Christmas cards.

Knowing that more symptoms will come, Kyle said it’s important to keep tabs on what treatments are available.

“We are going to keep working at it and keep it under control as much as possible because down the road I think there are going to be some drugs that are going to help us,” she said.

Helping patients cope

Of the millions of Americans who have used the Internet for health information, Nancy Hawkins may have been among the first.

In 1992, Hawkins was diagnosed with breast cancer. As a librarian at Kansas University’s Thomas Gorton Music and Dance Library, Hawkins had access to – by today’s standards – a rather primitive version of the Internet.

She researched treatments, surgeries and the cell type connected with the cancer.

“I essentially coped with the diagnosis by using the Internet, finding as much information as I could,” she said.

Active with the American Cancer Society and a local support group, Hawkins said that since then the Internet has played “such a huge role for people who have been diagnosed with cancer.”

In the privacy of a home, Hawkins said, people can ask questions that they might be embarrassed to ask in person.

However, she still recommends that those with breast cancer find support outside the Internet.

“It is important to connect with another person who has been diagnosed. It does take away some of the scary aspects,” she said.

Another breast cancer survivor, Judy Hollingshead works as a registered nurse and talks to patients before they go into surgery at Lawrence Memorial Hospital. She said the Internet has made it easier to meet patients’ needs and answer their questions.

“When they know a little, it is a much more productive conversation,” she said.

And, it gives patients more confidence if a reputable site reaffirms the advice given by a doctor, she said.

“The more savvy you become, the better you can advocate for yourself,” Hollingshead said.

The bad

The Internet isn’t always a blessing.

For Dr. Steven Bruner of Lawrence Family Medicine & Obstetrics, the No. 1 problem he comes across is patients who diagnose an illness before an office visit.

Bruner estimates about one-third to one-half of his patients use the Internet for medical information.

“Sometimes it makes them think they’ve got something horrible, so by the time they show up, you can hardly talk to them,” he said.

It’s an experience similar to what medical students go through, dubbed sophomore syndrome.

“You start thinking you’ve got everything you are reading about,” Bruner said.

Part of the problem, Dr. Weatherford said, is that patients are misled to believe that their symptoms point to a rare disease.

“They present symptoms that are very vague that anyone could say, ‘Yeah, I have this,'” Weatherford said. “And, it is not that those conditions don’t exist. It is just part of our medical training to help you figure out when something is a possibility and when it is not.”

Doctors tell patients about the common and most serious side effects to medication, Bruner said, but not every possible side effect. But, it is information that is easy to find online.

“For folks that are suggestible and read the list, they always find something that they are having,” he said.

And, Weatherford said, an even more dangerous scenario is when patients read about potentially harmful side effects of a drug and stop taking it.

“They need to call first,” he said.

However, both doctors say the Internet does more good than harm. It’s a useful tool for background information once a diagnosis is made, they say. For the more rare diseases, Web sites help people find support groups and even act as references for doctors.

“I think that empowers the patient and makes them feel like they are more in control,” Weatherford said.