Living With

Dear Friends:

Denise Balon

Myotonic muscular dystrophy (MMD) has been a part of my family’s life for many years. The symptoms for my siblings and me began in our 30s, and we believe the disease goes back at least two generations before us. Some of my nieces and nephews also are affected.

Like many of you, we were surprised to learn that such a wide range of symptoms — muscle weakness, involuntary clenching of hands and jaw, swallowing problems, eye problems, heart disorders, extreme fatigue and other difficulties — could be caused by a form of muscular dystrophy. With correct information about our disorder, we’re able to monitor and protect our health to a great degree.

This website has been prepared to give you the basic knowledge about MMD that you’ll need to make your life enjoyable and productive. With this information, you or your children can be prepared for changes to come and armed to minimize many effects of the disease.

By understanding how the disease affects me in different ways, I’ve been able to stay active while avoiding more physically demanding activities. I take pains to keep my stress level to a minimum and make sure I get plenty of sleep, because I’ve learned that stress and fatigue will exacerbate my symptoms rapidly. A pacemaker corrects the heart problems caused by my MMD.

I find that, with these precautions and forms of assistance, there’s little I can’t do in my personal life with my husband and extended family.

From this website, you’ll learn some encouraging things about MMD: There are treatments and interventions for most of the symptoms and difficulties that arise with the disease. For instance, I recently had successful surgery for my drooping eyelids. My nieces and nephews showed symptoms in childhood, and they’ve received expert medical guidance from the beginning for symptoms that include learning disabilities.

MDA’s research program is constantly making strides toward better treatments and a cure. It’s good to know that people with disabilities have more opportunities than ever before to develop and use their abilities, as well as legal rights to equal employment opportunity and access to public places. Federal law guarantees children with physical and cognitive disabilities a public education with whatever supports they need.

My family’s greatest ally in living with MMD is MDA. So, as you face the challenges ahead, please remember: You’re not alone.

Denise Balon
New Port Richey, Florida

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