Leg Weakness Myotonic Dystrophy

Myotonic Dystrophy a slowly progressing disease, until it is not slowly progressing. many patients reach a point where they can not go up and down steps anymore. This is a big barrier for many people. There are devices though that will help you up and down stairs. One of these is the Liftcar.

The Liftcar takes some getting used to and requires some skill for the operator to use. You need to tilt and remember to hold the button down. It works well and up and down stairs you can go. Myotonic Dystrophy Patients legs get weak with time. Mobility becomes and issue. But this device can help a lot! The downside is that it is really expensive and insurance does not pay for these type of devices for Myotonic Dystrophy Patients in the USA

Here is a video you can review

The Liftkar PT S
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Posting Again! – Myotonic Dystrophy News

Hi All…. You’ve noticed we have been missing for many months!. Our hosting company had a file size issue and when repairing this we had a meltdown of hacking and bad scripts on the site. Now we have repaired it all and are back on line so look for our posts again. we will concentrate on Myotonic Dystrophy and related posts. We try to keep up to date information relating to Myotonic Dystrophy on the site….. and info on DM1 that is not readily available elsewhere.


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Myotonic Dystrophy and the Bladder

Bladder and urinary issues in Myotonic Dystrophy are not reported as well as they should be. Many patients report incontinence problems but this is not listed on many of the myotonic dystrophy sites as an issue. During hospitalization incontinent issues may be of greater visualization as hospitals now have bladder scanners to look at this issue.

The issues with incontinence are many as shown in the attached study. Retention issues arise as the hospitals use 400ML of urine before they want to catheterize.

See attached file for more information.


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– Gathering for Myotonic Dystrophy Researchers

Today Sept 5th marks the opening of the IDMC-11 conference. This is the 11th time that the scientific community comes together to discuss the advances in the myotonic dystrophy field. The scientists share information about advances in the all stages of the disease from the molecular basis to drug development. Watch here for updates and summaries from the conference. Today is registration and the keynote address. The conference this year is in San Francisco, CA USA.

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New Dental Case Study shows benefits of Dental Care for Young adult

Dental issues loom large in myotonic dystrophy. Structural issues with teeth and gums. Lack of physical strength to properly clean teeth are a number of the issues that come up. Here is a recent case study of a young adult with DM1 that shows with extensive work a good outcome can occur. Here is the abstract:

Surgical Orthodontic Treatment of a Patient Affected by Type 1 Myotonic Dystrophy (Steinert Syndrome).


Myotonic dystrophy, or Steinert’s disease, is the most common form of muscular dystrophy that occurs in adults. This multisystemic form involves the skeletal muscles but affects also the eye, the endocrine system, the central nervous system, and the cardiac system. The weakness of the facial muscles causes a characteristic facial appearance frequently associated with malocclusions. Young people with myotonic dystrophy, who also have severe malocclusions, have bad oral functions such as chewing, breathing, and phonation. We present a case report of a 15-year-old boy with anterior open bite, upper and lower dental crowding, bilateral crossbite, and constriction of the upper jaw with a high and narrow palate. The patient’s need was to improve his quality of life. Because of the severity of skeletal malocclusion, it was necessary to schedule a combined orthodontic and surgical therapy in order to achieve the highest aesthetic and functional result. Although therapy caused an improvement in patient’s quality of life, the clinical management of the case was hard. The article shows a balance between costs and benefits of a therapy that challenges the nature of the main problem of the patient, and it is useful to identify the most appropriate course of treatment for similar cases.

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