From Jennifer Keller, Physical Therapist at the Center of Movement Studies
Thank you for contacting the Center of Movement Studies regarding exercise and AMN. Here is a brief update on our studies and recommendations from the lab for you.
1. Our paper is based on a study of both men and women that details some of the strength and sensory issues that are part of AMN. While it is a cross section of data and not a progression study it does appear that the three groups that are described may be indicative of what functional progression looks like in these people with AMN.
2. The handout (part 1) we provided at the 2014 ULF meeting with our current recommendations.
3. Stay tuned, as we’ve recently completed data collection for a study for women with AMN using Curves gyms and are looking forward to having the results available soon. As we are currently in the middle of data collection, I can only say that we have seen that exercise shows some benefit towards keeping the muscles at their current strength level and that it is also possible to strengthen muscles despite the symptoms of AMN. Of course, there may be a limit to the maximum strength any one particular individual may achieve.
A physical therapist local to you who specializes in neurological physical therapy is a good resource for establishing the most appropriate exercise program. The attached handouts will give you and your providers some guidelines based on our latest findings. I am always glad to speak with your physical therapist and answer any questions they may have in working with you.
One way to locate a local physical therapist is through the American Physical Therapy Association website link for “Find a PT” and search for those who note that they treat people with neurological disorders as a starting point. We usually recommend looking for someone who treats people with spinal cord injury or multiple sclerosis types of diagnoses since they tend to be most familiar with the kind of symptoms in AMN.
The Kennedy Krieger Institute offers a comprehensive clinic evaluation for people with AMN and you are always welcome to make an appointment with them/me for more information as well. To do that you could contact the nurse coordinator Kim Hollandsworth at firstname.lastname@example.org or you would call our intake number at 443-923-9200 and provide them with your demographic and insurance information and schedule an appointment. The Kennedy Krieger ALD resources page is available here.
I hope this information is helpful to you.
(For Physical Therapists)
A couple of other observations from my experience treating people with AMN: 1. There is variability in the degree of neuropathic pain that people report; women seem more affected than men. I have had some success using TENS for them. 2. Also, plantar fascia pain seems common and orthotics seem to help address pes cavus development from increased tone.