Teens and young adults can assume a key role in health care
by Tara Wood
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
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
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
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
"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
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
"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
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
"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."
10 WAYS YOU CAN
1. Make sure you have a good, basic understanding of
2. Keep a record of your medical history: conditions,
dates of operations, treatments, names of doctors, their recommendations, etc.
If your parents have already started a record for you, you can add to it.
3. Make your own medical appointments and order your own
4. Practice anticipatory appointment setting. If you
start to feel sick, make an appointment with your doctor for a few days later.
That way, if you do become sick, you won't have to wait for your appointment.
If you get better before the appointment, be sure to cancel the appointment
5. Insist that your health care team members talk to you
about your results. Ask the team to communicate among themselves so they don't
give you mixed or confusing information.
6. If you're female, find a physician who understands
the needs and concerns of women with your disability.
7. As your body changes, make changes in your diet. Keep
an appropriate weight for your mobility and general health.
8. Develop an exercise pattern for yourself.
9. Get involved in sports. They'll help you stay
physically fit, and give you a chance to socialize with new friends.
10. Take good care of your mental health. Enjoy hobbies,
movies, shopping or other things you enjoy.
Reproduced with permission from the Adolescent Health Transition
Project's pamphlet "Tips for Adolescents: Making Decisions About Your Future
Health Care." For more information, including resources for teens, parents and
health care providers, call (206) 685-1358 or visit http://depts.washington
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
"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
"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
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
"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."