January 2012

Charcot-Marie-Tooth patients delay using prescribed ankle foot orthoses

In the moment: Gait

Even if they have a device prescription, individuals with Charcot-Marie-Tooth disease tend to put off wearing ankle-foot orthoses (AFOs) until walking function is impaired, according to research conducted at St. George’s University of London and Kingston University, London.

Investigators compared presentation and gait function in two groups of people with CMT; 11 wore AFOs and 21 did not. Using a 10-m timed walk and a six-minute-walk test to evaluate gait function, researchers found that AFO wearers walked more slowly and with more effort than those who didn’t wear AFOs. The device wearers also had more severe disease, weaker leg muscles, and an increased perception of walking difficulty.

Walking ability among AFOs wearers was related to fatigue and perceived exertion and walking ability; among nonwearers, lower extremity muscle function determined gait function.

Presentation was similar in people who wear their prescribed AFOs, those who don’t wear them, and those not prescribed the devices. Investigators concluded that patients choose to wear AFOs when their condition is sufficiently impaired.

Source: Ramdharry GM, Pollard AJ, Marsden JF, Reilly MM. Comparing gait performance of people with Charcot-Marie-Tooth disease who do and do not wear ankle foot orthoses. Physiother Res Int 2012 Jan 9. [Epub ahead of print].

5 Responses to Charcot-Marie-Tooth patients delay using prescribed ankle foot orthoses

  1. Melinda Lang says:

    As someone who has CMT, I know this to be true. After being fitted for my first brace, which was quite expensive, it spent more time hiding in the closet then supporting my leg. Then my doctor told me, 2 yrs ago, it’s time to get an AFO for my “good leg.” I’m still waiting for a better type of AFO then what I already have for my weaker leg.

  2. Keith E. Vinnecour, C.P.O. (E) says:

    I have treated many patients with CMT and found that when the correct AFOs are applied the individuals walked faster and were able to walk longer. Therefore, this information would only be of value if the exact type of AFOs were described. The correct AFO would allow free plantar flexion with a dorsiflexion assist. The correct AFO would have corrective forces on the foot and ankle to force them into a more normal anatomical alignment, which would have the knees track more on the line of progression and the AFOs would have to be rigid enough to maintain these corrective forces. Supinate feet are more difficult to correct then pronated feet, but the supinated feet are more comfortable in the footplate of the AFO then without. You might check out the information from Becker Oregon for more detailed information.

  3. lenaki says:

    I myself have CMT, sorry to say but the reason CMT People put there AFO’s in the closet is the ORTHOTIST

    Keith E. Vinnecour, maybe more of them should think like you !!

  4. Steve Throner says:

    Finally, after 12 years of this nonsense, I am going to admit that I need help and ask for it. I guess this is as good a place as any to start asking.

    I am an ex-PGA Instructor, surfer, runner, mountain biker, collegiate baseball and soccer player. Except for golf, which is a major challenge now, I can no longer participate in any of these activities due to foot drop from CMT.

    I am perplexed. How do I go about determining the best foot drop brace and what is the best way to find an Orthotist that understands CMT and my need to BE PHYSICAL. The internet is overwhelming. I saw one guy use a NOODLE and actually run. I want to run too. Can someone set me on the right path please? I haven’t ever worn a brace and I have had foot “severe peripheral neuropathy” for 12 years. Now, I am falling way too much. I’d like to go from wobbling when I stand still, to walking quickly to get across a crosswalk fast enough to avoid taking on pancakeness as a hobby.

    Thanks for listening.


  5. Diane says:

    Steve – you may want to join Facebook and become part of the private group called CMTAthletes. Many, many athletes are continuing running or doing their sport of choice with the help of AFOs. There are also many CMT groups on FB that share their ideas and experiences with CMT.

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