About Richard

Inventor, entrepreneur, father, medical device manager.

Exercise and Training in Myotonic Dystrophy

A new review article has been published. An exercise or training program is generally good for people with Myotonic Dystrophy. However, not enough research has been done to figure out the optimum workout program.The article is a bit technical but its good as a general review. Its also good to print out and take to your doctor.

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
https://www.youtube.com/watch?v=QhBhuuoeyd4

The Liftkar PT S

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.

Richard

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).

Abstract

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.

Long Distance Marathoning with Myotonic Dystrophy Type 2

A RecentĀ  case study just published examined a person with a mild case of myotonic Dystrophy type 2 PROMM. This individual was a long distance marathon runner. The disease did not interference with the sport that the individual chose. Additionally, the doctors proposed that the heavy excercise may have helped to retard the progression of the disease.

“In conclusion, this case shows that PROMM may take a
mild course over at least 22 years, that PROMM with mild
myotonia may allow a patient to continue strenuous sport
activity, and that continuous physical activity may contribute
to the mild course of PROMM. The genotype/phenotype
correlation between the CCTG-expansion and the mild phenotype
is weak.

FULL STUDY can be seen at this link