New Book about a Family with Myotonic Dystrophy

There are not many books about myotonic dystrophy. There is a fictional series about a skater that has myotonic dystrophy. I wrote a short book about the hopes and aspirations of my son “The boy who was President”. Now comes a great biography about a family with Myotonic Dystrophy. A must read for all with the disease. Here’s a short introduction:

As a young girl, my constant goal was to help my brother, Dustin, walk. Dustin’s limits were hard to gauge because he constantly surpassed expectations. He was born with congenital myotonic dystrophy and expected to die, then to live three months, then three years. Instead, he gained strength and capabilities until age 13, when he had a simple cold and just did not wake up from his nap. His body became too much for the largest muscle in his body, his heart.

While Dustin was alive, I threw quarters in wells, prayed every night, and practiced with him every day after he had surgery and got corrective braces. I would stretch my brother’s legs, rotate his ankles, do resistance exercises and help him practice standing. At age 12, I thought willpower was so strong that, through perseverance and dedication, I could will my brother to walk.

Three years older than my brother, I grew up doing adult caretaking tasks. Through the years, I would change thousands of diapers, brush Dustin’s teeth, lift him into bed, administer nebulizer treatments, clean his feeding tube, watch him when both my parents had to work, bathe him, unload his wheelchair from the bus and play with him. Most things I did for my brother were helpful, but with my conceptions about willpower and Dustin walking, I pushed my brother past his comfort level more than once and caused more pain than progress. For me, a healthy sibling, willpower was a tool to push past obstacles. However, the same view I took of my young healthy body proved detrimental to my brother’s and caused him pain.

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New Video Resources for Myotonic Dystrophy Patients

The Myotonic Dystrophy Foundation (MDF)  based in Menlo Park, CA has launched a variety of new video resources for patients and families with myotonic dystrophy. These resources are available free and on the internet. Families have complained about a lack of resources available in easily understood formats. The videos are informative and focus both on medical issues and day to day management of the disease.

The MDF has captured many informative sessions from their many conferences over the years. These sessions were conducted by experts in the field and deliver the best and up to date information to patients. Previously this was only available at the conference. It was difficult for many patients and families to attend the conferences. Now all that information is broadly available on the internet. Click here for access to the video academy.

The other major initiative of MDF is to have a you tube channel. Recently the MDF launched a you tube channel which again has high quality reviewed materials in a video format. Click here for access to the MDF You Tube channel

These resources greatly expand the available information and accessibility for the patient population and caregivers of people with Myotonic Dystrophy.



For some families the diagnosis of Myotonic Dystrophy is made via their child who may have some learning disabilities. Myotonic Dystrophy affects learning and makes it more difficult for children to learn certain tasks. For some reason some tasks are more difficult for these children. Here is some additional information on Learning disabilities from the Netherlands

Its  important to begin education at the earliest level. Birth-3 programs are available in the USA. This intensive help will optimize the educational structure for the child. Most children will begin in Special education classes before kindergarten. Because of the child’s ability to imitate, mainstreaming in regular school should be considered. Here is some specific information:

From the MDA USA: Dr. Ed Goldstein MDA Clinic Director Atlanta Georgia

Q: My child is in an integrated kindergarten. Are there any specific strategies for learning that the school should be aware of?

A: The Spectrum of mental development in children with CMD is quite different from that of the general population. In some studies, 2/3 of these children are mentally retarded (MR); meaning that they have a persistent, global delay in their cognitive development. In addition to varying degrees of mental retardation, many CMD have learning disabilities (LD). These are problems in selected areas of mental processing, which interfere with certain aspects of the educational process. Many of the patients that I follow have a component of Attention Deficit Hyperactivity Disorder (ADHD), which is typified by hyperactivity, impulsivity and distractibility. In the absence of significant heart disease, these ADHD symptoms can sometimes be treated with the use of stimulant medications like Ritalin or Dexedrine. Finally CMD patients are described who have elements of Pervasive Development Disorder (PDD) which is characterized by decreased reciprocal social interaction. What I typically recommend for children is the performance of psychometric testing by a developmental psychologist. This is a test of his mental capabilities and will define the elements of MR, LD, ADHD, PDD and provide insight into the nature of some behavioral problems. This type of testing is not inexpensive, often costing $1000 to $2000. However, good Psychometric Testing is the only way that you can gain appropriate insight into the nature of your child’s thought process, thereby permitting you to make informed decisions about school environments, rehabilitative therapies and behavioral interventions. Your local school system may provide this testing for you.

The variability juvenile and congenital forms of the disease will make management of the educational process unique to each child. Some of the important issues to deal with are the behavioral issues that arise.  Things like incontinence, learning disability, speech problems need to be dealt with. We are still searching for more information on these subjects.

More information on education and learning strategies are needed. If you are an educator please write and send information about what you are doing in your classroom!