Staying upright with a Neuromuscular disease like Myotonic Dystrophy

Staying Upright with a Neuromuscular Disease

From: Multiple Sclerosis Society Quest newsletter, written by Christan Medvescek

Some people have nightmares about falling off cliffs. Brad Williams has nightmares about falling — period.

“Whenever I’m walking, falling down is always the major thought on my mind,” says Williams, 39, of Alexandria, Va. “It has to be on my mind a lot for me to be dreaming about it.”

Williams has Miyoshi distal myopathy, a slowly progressive form of muscular dystrophy that primarily affects the extremities. He hosts an MDA Internet chat under the nickname “dysf,” and notes that other chat participants also have reported falling nightmares. “It’s like a flying-falling dream, except it’s just about falling down.”

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Falls and stumbles in Myotonic Dystrophy DM Patients

Falls and stumbles are TEN times more likely in patients with myotonic Dystrophy that in a normal healthy population. One reason for the fall or stumble would be for a sustained muscle contraction that can not be counterbalanced by other muscles. Fall prevention programs should be implemented for patients with DM.


J Neurol Neurosurg Psychiatry. 2006 March; 77(3): 393–396.

Published online 2005 September 30. doi:  10.1136/jnnp.2005.066258
PMCID: PMC2077718

Falls and stumbles in myotonic dystrophy

This article has been cited by other articles in PMC.



To investigate falls and risk factors in patients with myotonic dystrophy type 1 (DM1) compared with healthy volunteers.


13 sequential patients with DM1 from different kindreds were compared with 12 healthy volunteers. All subjects were evaluated using the Rivermead Mobility Index, Performance Oriented Mobility Assessment, and modified Activities Specific Balance Confidence scale. Measures of lower limb muscle strength, gait speed, and 7‐day ambulatory activity monitoring were recorded. Subjects returned a weekly card detailing stumbles and falls.


11 of 13 patients (mean age 46.5 years, seven female) had 127 stumbles and 34 falls over the 13 weeks, compared with 10 of 12 healthy subjects (34.4 years, seven female) who had 26 stumbles and three falls. Patients were less active than healthy subjects but had more falls and stumbles per 5000 right steps taken (mean (SD) events, 0.21 (0.29) v 0.02 (0.02), p = 0.007). Patients who fell (n = 6) had on average a lower Rivermead Mobility score, slower self selected gait speed, and higher depression scores than those who did not.


DM1 patients stumble or fall about 10 times more often than healthy volunteers. Routine inquiry about falls and stumbles is justified. A study of multidisciplinary intervention to reduce the risk of falls seems warranted.

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