It’s almost unfair to my loved ones: A brain tumor support group

Jeffrey Schanz of Washington, DC is an 11-year survivor of a glioblastoma. After treatment, he was able to return to his high-pressure job with the U.S. Department of Justice as director of the Office of Policy and Planning within the Audit Division. He recently accepted a new job as inspector general of the Legal Services Corporation, which provides legal assistance to low-income people.

Jeffrey, age 56, runs a support group at the George Washington Cancer Institute in Washington, DC. Support group members share nutrition and exercise tips, information about alternative therapies, and humor.

Attending a support group helps him deal with the ups and downs of his recovery. Though his thinking is about the same as it was before the brain tumor, “not every day is a good day….There have been cases where I’ve had to be more deductive to figure out what was going on instead of just snapping my fingers and going, ‘Oh, yeah, I understand that...' In the brain-tumor world we call it a ‘new normal’ because you’re never going to be the same person," he says.

He understands the need for camaraderie. “It’s almost unfair to my loved ones,” he says, “but I’m more comfortable with brain-tumor survivors because we all know what we’ve gone through. It’s still hard to articulate how hard you have to fight.”

Advice to people with a brain tumor: Find a support group to participate in.

Read another brain tumor story.

Thanks to Stephanie Cajigal for the source story in the September/October issue of Neurology Now.

A second opinion for Lou Gehrig's Disease

Gaetan Guertin, a native of Quebec, Canada, sought a subspecialist's opinion after his first neurologist suggested the diagnosis of amyotrophic lateral sclerosis (ALS, or Lou Gehrig's Disease). Gaetan began to experience leg fatigue when he was 55 and soon developed foot weakness and muscle atrophy. In an interview with Neurology Now, Gaetan said the expert's approach was more confident. "She had a lot of experience and knowledge and was more open,” he said. He added that since the neurologist worked at a research and training hospital, the diagnostic testing could proceed more promptly.

Advice: If you're unclear about a diagnosis, consider getting a second opinion.

Browse for related stories in the index at the very bottom of this page, or read a story about a man with Lou Gehrig's disease.

Thanks to Dr. Orly Avitzur for the source article in the November/December, 2007 issue of Neurology Now.

Then he walked out of the room: A neurologist's misdiagnosis

When Todd Bischoff developed a tremor at age 46, a neurologist diagnosed essential tremor and gave him two prescriptions to fill. "He said to let him know if I wanted to take the medications. Then he walked out of the room without explaining what essential tremor was or telling me anything about the drugs," Todd says. This was the first red flag. Then, when Todd went home and researched the condition, descriptions of Parkinson's disease seemed to fit his symptoms much better. Todd sought a second opinion, and his next neurologist confirmed the diagnosis of young-onset Parkinson's.

Todd's second neurologist sent him to a Parkinson's disease specialist because he felt that the early age of onset warranted special consideration. Although he had to pay out of pocket, Todd ultimately received his care from a movement disorder subspecialist because he felt that the doctor's expertise and superior level of skill were worth it. "I'm much more confident in dealing with my condition now and know that if I have questions, my neurologist is available to assist me," he said.

Todd believes teamwork is critical for those dealing with a progressive neurodegenerative disease. "This is your health we're talking about – you have to advocate for yourself. If you don’t, you could potentially suffer from poor care, or even the wrong care," he says. "You need to solidify your diagnosis so you know exactly what you're dealing with. Otherwise, how can you most effectively treat what you have?!"

Todd runs a support group (PDTalks.com).

Advice: If you don't have confidence in the diagnosis, get a second opinion.

Browse for related stories in the index at the very bottom of this page, or read a second opinion story.

Thanks to Dr. Orly Avitzur for the source article in the November/December, 2007 issue of Neurology Now.

He always took the blows in stride: Multiple concussions in athletes

In his years as a Harvard University defensive tackle and a professional wrestler, Chris Nowinski has been leveled by a helmet-to-helmet collision, based in the chin, and kicked in the head. He has been knocked unconscious, seen double, and forgotten where he was or what he was supposed to be doing.

Chris says he always took the blows in stride, getting back into play as soon as he could, sometimes within minutes of the injury. He handled it the way he'd handle any other injury.

"Guys work through all sorts of pain," he says. "If everyone took a day off because of pain, no one would show up to work. I just considered it like a normal bruise."

But concussions, he would find out later, aren't like any other injury. The cumulative effect of six concussions ended his career with World Wrestling Entertainment in 2004 and left him struggling with chronic headaches and memory problems.

Today, Chris is a crusader, raising awareness about the dangers of concussions through the Boston-based Sports Legacy Institute.

Multiple concussions also have had serious lasting effects for Troy Aikman, the Dallas Cowoys quarterback; San Francisco Giants catcher Mike Matheny, New England Patriots linebacker Ted Johnson, and NFL players Andre Waters and Terry Long, among others.

Advice for parents of high school football players: Get your son to a physician if he shows these symptoms after a concussion: headache, dizziness, problems sleeping, imbalance or lack of coordination, fatigue, sensitivity to light or noise, difficulty remembering or concentrating, difficulty thinking clearly, work-finding difficulty, irritability/moodiness/ impulsiveness, or feeling depressed or anxious.

Read another athlete’s concussion story, or read Lisa Phillips' source story in the September/October issue of Neurology Now.