Living with Myotonic Dystrophy – Information for Patients and Families

So whats it like living with Myotonic Dystrophy? It’s a highly variable and complex disease so each person’s journey is different. There are some commonalities. A study was done a ways back to see how couples coped with the disease. This study can be helpful for families with the disease, and extended families to help them see the disease and to provide more support. A common theme is that the couple seems to have to find their own way, that there is not one entity that can point them in the right direction. Even family and friends need help and  direction in understanding the disease. This article is easier to read than most medical articles.

Click here for Study/Article Living with Myotonic Dystrophy

This study was done in the Netherlands which has produced a lot of good information on Myotonic Dystrophy. This article can be shared with family members.

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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.

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The Effect of Myotonic Dystrophy on Daily Life

This post refers to a study done by Cynthia Gagnon one of the preeminent researchers in myotonic dystrophy. In 2007 a study was published and this post is based on that article. Click here for a full copy of the scientific study ==>Life Habits with Myotonic Dystrophy

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Grant Applications Due Today for MDF Fellowships

The Myotonic Dystrophy Organization continues its strong support of Research by soliciting applications for fellowship grants. This program helps to encourage budding researchers in the field of myotonic Dystrophy. The grants are due today Sept 14th 2012 at 5PM Pacific time. The following is from the MDF website

Grant Applications

Call for Postdoctoral Fellowship Applications

The Myotonic Dystrophy Foundation (MDF) is pleased to announce the 5th annual Fund-A-Fellow program to support innovative research on myotonic dystrophy. On January 1, 2013, MDF will award a number of $100,000 postdoctoral research fellowships, each providing two years of support at $50,000 per fellowship, per year.

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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!

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