Be Your Own Best Advocate: Taking Charge of Your Care

Facing a neuromuscular disease diagnosis can be devastating, overwhelming and confusing, but empowering yourself to take charge of your care or your child's care is more important than ever

Article Highlights:

This article focuses on the importance of being the quarterback of your health care team while still seeking other sources of information and support, including services provided by MDA.

by Robyn L. Phillips on July 7, 2014 - 9:21am

Quest Summer 2014

Whether you are newly diagnosed or have been living with a neuromuscular disease for years, there is arguably one guiding principle that is most important when it comes to making decisions about your care and quality of life: You are in charge.

And with good reason. 

Researchers, physicians, therapists, social workers, personal care attendants, MDA clinicians and community advocates, and more are all indispensable resources for helping you manage your disease. But remember: This is your health, your body, your life. So there is no person better suited than you — with the exception of a parent/guardian of a young child with muscle disease — to coordinate the efforts of health care professionals and directly oversee your care and treatment plans.

Think of yourself as the lead actor/director, the quarterback/coach. You still need a great supporting cast and crew and dedicated teammates in pursuing your care. But as the one person who lives with the medical outcomes, it’s only fitting that you also be the one who’s calling the shots along the way.

Your local MDA clinic offers access to top health professionals who are skilled in the diagnosis and medical management of neuromuscular disease.

Your supporting cast

Assuming a central role in your care is more important than ever because with today’s improved treatment options, we benefit from longer life expectancies — along with more life choices and opportunities. Choice is usually a good thing, but it can also be overwhelming, especially if you or your child has only recently received a neuromuscular disease diagnosis. 

“Sometimes logic goes out the window when we are faced with a devastating diagnosis,” says Rebecca Axline, supervisory clinical social worker at Houston Methodist Neurological Institute in Texas. “However, you can gain some control back by creating a support structure.”

With that goal in mind, Axline recommends that you play an active role in assembling your care team and resources. Remember: Being in charge of your care doesn’t mean you are alone in this fight — you’re not. 

Since 1950, the Muscular Dystrophy Association has been helping individuals and families confront the daily challenges of living with muscle disease, so consider MDA a primary resource for educating yourself and tapping into MDA’s vast community for strength and support.

“MDA.org offers access to support groups and online communities,” says Marie Ritzo, clinical social worker for the MDA Clinic at Children’s National Medical Center in Washington, D.C. “It’s helpful to share experiences, ideas and strategies with others in similar circumstances.”

Consult with your doctor for referrals to counselors and therapists as needed. And be sure to register with your local MDA office to take advantage of its lifesaving services, as well as to have access to the local MDA clinic’s top health professionals, who are skilled in the diagnosis and medical management of neuromuscular disease. MDA’s local offices offer resources for family members and other caregivers in your life, too, including support groups, equipment help and more.

To assist teens, young adults and their families as they prepare for and transition into adulthood, clinical social worker Marie Ritzo at Children’s National Medical Center in Washington, D.C., recommends the MDA publication, Road Map to Independence for Young Adults.

The booklet is part of the MDA National Transitions program, which provides resources and services to support the shift from pediatric health care to adult health care, and from childhood into adulthood. 

And to learn more about how other young adults are becoming their own self-advocates and transitioning to college and independence, check out the MDA Transitions Center bloggers.

To register with your local MDA office and gain access to the MDA clinic in your area, enter your ZIP code into the MDA locator box to find the locations closest to you.

To help you coordinate your care with your support team, MDA offers myMuscleTeam — a free, practical online portal that lets you organize a care coordination calendar, post journal entries to update friends and relatives on your progress, and access other helpful tools.

Get started and create a myMuscleTeam community today.

Your care plan

Once you’ve started putting your support team together, your next steps will depend on your (or your child’s) diagnosis, age and available support from friends and family. However, at the heart of every care plan is self-education and self-empowerment. “First, it’s crucial that you educate yourself about your disease and start asking questions,” says Axline. “I recommend keeping a notebook to keep track of everything.” 

Once you start gathering and assimilating information, you may realize where or in what ways you need additional support. For example, if your school-aged child has received a muscle disease diagnosis, contacting his or her school as soon as possible will be a crucial first step toward empowering the school as part of your child’s support system.

“Children spend so much time at school, so it’s important to enlist school personnel very early on,” explains Ritzo. “The school needs to understand what’s going on with the child and help put appropriate services in place. MDA also can help. For example, we have people who will go to the school to explain to your child’s teachers and peers about the disease, so the other children can participate with helping and socializing your child.”

For adults living with a neuromuscular disease, empowerment comes in the form of education and communication. “Adults with neuromuscular disease can face challenging decisions about family, work and even other health issues, so it’s important to have the difficult conversations sooner rather than later,” advises Axline. “Empowerment includes making life care decisions on your own terms.” (For tips specific to managing muscle disease as an adult, see Tips for Adult-Onset Disease.)

Your role over time

Before children who have a neuromuscular disease are old enough to advocate for themselves, parents or guardians must fill that role. But a crucial part of this arrangement involves the intentional facilitation of empowerment skills in a multitude of settings so that children are well-equipped to become effective self-advocates as they transition into adulthood.

So with more individuals with neuromuscular disease living into adulthood today than in previous generations, the question becomes: How do children with neuromuscular disease transition into adults with neuromuscular disease? 

“This is a critical issue: the development of independence,” says Thomas Crawford, associate professor of neurology and pediatrics and co-director of the MDA Clinic at Johns Hopkins Children’s Center. “The normal process of developmental independence involves children progressively seeking more ‘freedom’ from parental oversight. The loss of mobility and the narrowing of independent range that accompany neuromuscular diseases distort this normal process.” 

Crawford believes that MDA summer camps are the single-biggest and most important means to counter this trend. He actually “prescribes” going to camp, as much for reluctant mothers as for their uncertain kids.

Ritzo agrees that advocacy for yourself as an adult actually starts in childhood. “Children with neuromuscular disease should start talking to their medical providers on a cognitive and developmentally appropriate level,” she suggests. “Parents should encourage children to ask questions and become accustomed to participating in decisions about their care.”

In recent years, Crawford has seen “too many” young adults with neuromuscular disease who limit their own expectations for life after high school. “This is unfortunate, especially since advancements in education and technology can bypass physical limitations,” he says. There are, however, great examples of young people with muscle disease who are anticipating and surmounting the physical issues associated with important life activities such as college, Crawford adds. 

Your life to live

Drew Bonner had support from his family with his transition to college.

Take Drew Bonner of Fairfax, Va. Drew received a diagnosis of Duchenne muscular dystrophy (DMD) in first grade. From the beginning, his parents, Jan and Neil Bonner, enlisted MDA to help Drew reach his full potential. “We brought in people from MDA to educate Drew’s teachers and peers about his situation,” recalls Jan Bonner. “It made an enormous difference in how Drew was accepted and how he started to learn to advocate for himself. He learned to listen to his body and then communicate his needs to adults. 

“Drew was one of those kids who never took shortcuts,” Bonner continues. “He wants to do everything that everyone else is doing and be normal. I’ve always told him, ‘If there are things you want to do, you can do it. We just need to take the time to plan it out.’”  

By the time Drew graduated from Fairfax High School in June 2013, he had been accepted to several universities. He decided on the University of Virginia in nearby Charlottesville, where he received a full scholarship. Drew, 18, is majoring in computer science, and he is the student manager for the university’s nationally ranked baseball team. 

Jan Bonner admits that college has been a tough transition for Drew, but it has given him a great sense of accomplishment. “He’s learning how to communicate with his professors about his situation and to manage his personal assistants,” she says. “About six weeks into the school year, Drew told me, ‘Mom, I knew you guys were there to support me, but I realize I need to take care of myself now. I guess that’s what growing up is about.’

“In the end, it’s important for parents to believe their kids can do what they want, including being independent adults,” Bonner adds. “If the parents don’t believe it, then the children won’t believe it.”  

“Drew is effectively surmounting his challenges,” notes Crawford. “Drew will be successful, and he will be gainfully employed after college — that is easy to see. Our challenge is to get more young people with neuromuscular disease to make the transition to independence and realize their potential as effectively as Drew has.”

Like Drew’s experience leaving the built-in support of his childhood home and transitioning into college and adulthood, taking charge of your care and related life choices can be daunting at first. But, ultimately, it’s the best way to ensure your independence and maximize your quality of life.  

ALS primarily affects adults, so the issues the ALS population faces often are different from the issues faced by those living with pediatric-onset neuromuscular diseases. But since a proactive, empowered approach to managing one’s disease is still critical to one’s well-being in adulthood, the following tips are important for those with ALS as well as those with other neuromuscular diseases:

  • Proactive management of symptoms can ease the burden of ALS, so early intervention and regular visits to your neurologist and MDA clinic team are crucial.
  • Consult with your physician before engaging in any kind of physical activity and for tips on maintaining a healthy weight.
  • Monitor your insurance and financial statements. Once diagnosed, the average life expectancy for a person with ALS is three to five years, but some people are living for decades with the disease. So keeping up with finances is a must. 
  • Stay in touch by visiting mda.org and by staying in contact with your MDA clinic team. Be aware of new options, treatments or research trials that may be available to you. 

Additionally, individuals with ALS often face decisions about work, family and financial respon- sibilities; other health issues that accompany aging; and decisions about treatments as the disease progresses. So be sure to plan ahead accordingly.

“It’s also important to be able to have difficult conversations with your family and your clinical team when making key decisions,” says Rebecca Axline, a licensed clinical social worker based at Houston Methodist Neurological Institute. “Educating yourself on your options, planning ahead and being clear about your decisions are the most empowering things you can do.”

Here are three places to start:

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