Teens and young adults can assume a key role in health care responsibilities

It's a classic conflict for many teen-agers and young adults: You're eager to take charge of your life and take on adult responsibilities, while at the same time you want to kick back and enjoy life at full throttle with no grown-up cares.

Add a neuromuscular disease to this quandary, and the list of adult responsibilities and lifestyle challenges grows considerably.

There's one area in which young people can and must play a role, beginning in the early teens if not sooner: health care.

Some experts and young adults agree that by learning to manage your personal health care, the responsibility and skills you gain can spill over into other areas of your life.

What exactly does "health care" encompass? Everything from having a handle on medications, medical equipment and doctor's appointments to making medical decisions that can affect your quality of life. Lifestyle factors such as diet, physical exertion, stress and emotional well-being are also part of the health care picture.

Greg Carter, clinical associate professor of rehabilitation medicine at the University of Washington School of Medicine, said managing your health care means looking at your well-being from a broad perspective.

"Taking charge of one's health care means being an active partner with your health care provider in determining which medical treatments are appropriate for you and in line with your perspective of what is right for you," he said.

The more involved young people become in this process the better, said Carter, who directs MDA's clinics in Tacoma and Olympia, Wash.

"I think it is absolutely imperative that young adults with neuromuscular disease assume as much responsibility as they can in directing their health care," Carter said.

Carter's opinion is backed by science. He's overseeing a five-year study about quality of life in people with neuromuscular disease. (The study is funded by the National Institute on Disability and Rehabilitation Research.)

"Several past studies as well as our current one have shown that health care providers frequently underestimate the quality of life in patients with physical disability. This misconception may well affect the health care provider's expectations and treatment decisions," Carter said.

It's your responsibility, as a health care consumer, to be sure your doctor provides the health care you need to maintain the quality of life you choose.

Ryan Jennings of Columbia, S.C., doesn't need scientific data to prove how important it is to stay on top of his health care. He learned firsthand during his freshman year at Presbyterian College in Clinton, S.C.

"Obviously, if you want to be active and involved, you need to be healthy. For somebody who has a neuromuscular disease or anyone with a disability, that's only going to be compounded," said Jennings, a 19-year-old with spinal muscular atrophy.

For Jennings, managing his health care "pretty much involves doing what you know you need to do. For example, I didn't feel very good yesterday, and knew that I needed to rest up some, so I slept and I made an appointment to go to the doctor here on campus," he said in an interview earlier this year.

Jennings, who lives in a campus dorm and uses a wheelchair for mobility, said he's also learned the hard way what his limitations are. "Friday and Saturday nights I can't just stay up until 2 or 3 a.m. having a good time. I have to turn in early," he said.

That, plus realizing the importance of time management, are valuable lessons he's thankful to be learning during his first year of college. When he manages his time wisely, Jennings can complete his classwork, enjoy his part-time job as a student trainer for college athletic teams, and take part in activities such as pledging Kappa Alpha Order fraternity.

"It's allowed me not only to go to school here, but to be involved in different activities so that I can lead what would be considered a 'normal' life for a college student," Jennings said.

For Michelle Moffitt, taking a role in her own health care symbolizes her increasing responsibilities in other aspects of her life.

Moffitt, a 23-year-old from Hubbard, Ohio, received a diagnosis of Friedreich's ataxia just two days before her 15th birthday.

Initially, she gladly took a back seat to her parents and allowed them to direct her through the many medical appointments and tests, and to sort through what the diagnosis meant.

But now, Moffitt plays a greater role in her health care, whether it means making the most out of visits to the local MDA clinic, or dealing with her health insurance. When it appeared that her insurance coverage would lapse because she's between undergraduate and graduate schools, she even wrote letters, contacted her doctors and made phone calls until the problem was solved.

"At first, I was sort of grateful that my parents would take over the reins and be in control of everything," said Moffitt, who plans to pursue graduate studies in experimental psychology with an emphasis in special psychology beginning this fall. "But as time goes by, I've slowly tried to take back some of that control because I think I have the realization now that they're not always going to be there, and I'm going to have to learn to do this stuff on my own."

Which brings us to the key factor that allows young people to take charge of their health care: parents giving up control.

For a variety of reasons, some parents struggle with letting their children with neuromuscular diseases get involved in making health care decisions.

Carter said he sees young people become interested in their health care as they enter adolescence, often when other issues of self-direction and independence arise.

"This is a good thing really, although it can sometimes cause grief for parents. Most of my families of kids with neuromuscular disease do try to make sure that the child is happy with decisions about their care, although sometimes it is more difficult with younger patients," Carter said.

Moffitt said her parents, Patricia and Raymond Moffitt, have deliberately worked to give her more control and to help her speak for herself. This was first noticeable to Moffitt at her MDA clinic appointments.

"My mom would always go into the room with me when the doctor would come in, but just in the last two or three years she's had me go in by myself. I thought that was really neat because she's letting me do stuff on my own," Moffitt said.

And when she recently got braces for her ankles, it was her decision.

"My mom totally left that decision up to me whether I wanted it or whether I thought I would wear them," said Moffitt, who is able to walk with assistance, and recently purchased a scooter to enhance her mobility.

The transition has been challenging at times, but something she appreciates.

"I'm sort of a shy and passive person, but I used to be very, very shy. Even when the doctor asked me a question, I would sort of look at my mom so she would tell them the answer," Moffitt said. "I can't do that anymore because my parents have sort of made me [speak up]. That is a good thing on their part, because I would probably still be that way today. They realized that I needed to take more control over my life."

Moffitt said her family still struggles with control when it comes to her overall independence and safety. But they support her plans to live on her own for the first time this fall when she attends graduate school. Plus, there are wedding bells in her future.

"I got engaged a couple months ago, so if my parents didn't already get the point, it sort of drove it home that I'm old enough and I'm going to go out on my own anyway," said Moffitt, who met her fiancé, James Smith, through Quest's Pen Pals listings. Smith lives in Akron, Ohio, and has muscular dystrophy.

Ryan Jennings finds that taking charge of his health care has "allowed me to be involved in different activities so I can lead a 'normal' life for a college student."

Ryan Jennings has been involved with his health care decisions since he was a youngster. Parents Gregg and Carol "have always made me be active in my health care. Maybe not to the point of making appointments and all that stuff, but they've always wanted me to be involved in decisions."

An example: When he was in seventh grade, he needed surgery to correct scoliosis.

"Well, that's an obvious decision you have to make — you've got to have surgery — but in their opinion it was something I needed to consent to, not something they could consent to for me," Jennings said. "So it's always been important to them that I be involved in my health care, and that's been a real blessing for me now that I'm making that transition into adulthood."

For families whose transition isn't so smooth, Carter prescribes communication.

"Independence for a young adult often creates some conflict with parents, but this is a rite of passage for all young people, including those with neuromuscular disease. The key thing is to be open and communicative. Even if you disagree with your parents it's still OK to listen to them and get their viewpoint," Carter said.

For parents, the challenge is just as great.

"Parents must be willing to let go of the leash and assume a more supportive role, being an advocate for their child rather than someone directing their lives. Young adults with neuromuscular disease need to feel comfortable about their individual role and place in society, and being an active, assertive participant in health care is a great way to start."

When it comes to gaining independence and control over your health care, as well as other parts of your life, preparation and planning are key steps. For example, finding the right doctor.

During the teen years, young people leave the care of a pediatrician for an adolescent medicine specialist or an adult care provider. Adolescence is a good time to make sure your primary health care doctor and other providers, including your neurologist, orthopedist, gynecologist and other specialists, share your perspective.

First, Carter said, "Make sure the provider is knowledgable about neuromuscular disease and willing to refer to a specialist when necessary. MDA clinics are a great resource in helping direct appropriate local care."

Before you go to an appointment, it helps to make a list of things you want to discuss, so nothing gets overlooked. Then make sure you and your provider are communicating effectively, he said.

In other words, speak up, and make sure the doctor takes the time to listen to you.

"Young adults with neuromuscular disease should be assertive about expressing their wants and needs. Their health care provider should be in tune with that and assume an advocacy role, not a dictatorial role," Carter said.

If the relationship isn't ideal or comfortable, then don't be afraid to shop around, Carter said.

"If the health care provider is not willing to spend the extra time needed for most patients with neuromuscular disease, then find another one," he said.

Carter also recommends becoming familiar with information about your neuromuscular disease and your medical history. That includes some practical steps.

"I think it is important for all people with neuromuscular disease to wear a medical identification bracelet listing their disease. In the event of a car accident or other injury it would be extremely important for the treating physicians to know they had a neuromuscular disease," he said. "Beyond that it's always a good idea to keep a list of your medications, allergies and past surgeries."

Planning and gathering information can help you take charge of your health care, according to materials from the Adolescent Health Transition Project. The Seattle-based program is designed to help adolescents with special health care needs smooth the transition from pediatric to adult care.

The project's pamphlet "Tips for Adolescents: Making Decisions About Your Future Health Care" (see "10 Ways You Can Take Control") offers helpful suggestions, such as reading about your disability or illness, and talking to others with the same health issues. Also, keep a record of your medical history or add to a record that your parents might have started.

Managing your health care will often blend into other areas of your life. The planning, preparation and information gathering you learn to do can assist in other life transitions such as moving away from home, starting college or simply gaining more independence.

"If you want independence, then set the mechanisms in motion that will grant you the most independence," Carter said. For instance, if you're college-bound, you'll need to check into accessible housing, transportation, personal assistants and community services along with appropriate medical care.

Michelle Moffitt, graduate student in psychology says, "My parents made me speak up to my doctors. They realized I needed to take control over my life."

Moffitt said some of the best lessons she learned in college didn't come from a textbook.

"I think my experience of being in college helped me learn to gain more independence in everything in my life. No matter how good the disability program is, it's so tough going to college when you have a disability," said Moffitt, who had to take steps beyond those of her fellow students when it came to attending classes.

"At the beginning of each quarter, I had to go to the professor and explain that I needed to tape record the notes, that I needed a special way to take tests," she said. "I had to learn to have my own voice that way, and that trickled over to everything else in my life."

Moffitt, who graduated summa cum laude (the highest academic honor) from Youngstown State University in Youngstown, Ohio, said she learned never to use her disability as an excuse not to try for success. It's a lesson she hopes others with disabilities will take to heart.

"People that are physically challenged have an obligation to make other people aware that it doesn't affect every part of their life," she said. "I could have easily sat at home and felt sorry for myself."

Jennings echoes Moffitt's sentiments, and says he encourages other young people with disabilities to ask themselves some heavy questions.

"You could just sit around and let other people take care of your business and all that stuff. That's nice and that's easy, but are you really advancing as a person? Are you making your contribution to this world?" Jennings said.

"For everyone from age 18 to 22, this is their opportunity to discover who they are and be their own person, and why shouldn't you?" he said. "It may take some assistance with a wheelchair or who knows what other kind of adaptive device, but why not? You have every right to, so take full advantage of it."