Adrenoleukodystrophy and Exercise

Adrenoleukodystrophy and Exercise
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Many patients with the adult form of adrenoleukodystrophy (ALD), called adrenomyeloneuropathy (AMN), experience weakness and stiffness in their leg muscles, leading to trouble walking. A careful exercise plan may help you maintain muscle strength for longer.

The following will help you learn more about the types of exercise that may best for you.

How does AMN affect strength and balance?

Like other types of ALD, AMN is caused by mutations in the ABCD1 gene that resides on the X chromosome. ABCD1 contains the instructions necessary for cells to make the adrenoleukodystrophy protein, known as ALDP. This protein is essential for breaking down very-long-chain fatty acids (VLCFAs) in the body, each of which exhibits certain functions. When ALDP does not function properly, VLCFAs build up inside cells and tissues and cause damage.

How could exercise help me?

Exercise may help improve your strength and flexibility. This, in turn, could help prevent falls or help you get back up if you do have a fall.

Regular exercise also could help maintain or improve your physical fitness, mental health, and overall well-being, in addition to potentially increasing your energy levels and sleep quality.

Who can help me put together a routine?

Physiotherapists can work with you to put together an individualized exercise plan to improve your strength and flexibility. Personal trainers who have experience working with people with neurological disabilities also could help you to safely exercise and develop a routine.

Is exercise safe for me?

The largest risks of exercise are falling or hurting yourself with weights or equipment, which can occur due to a lack of coordination and sensation. Having a personal trainer or physiotherapist help you with the exercises until you feel comfortable can help ensure your safety.

You also should check with your physician, prior to beginning any new exercise program, to make sure that it is safe for you.

What kind of exercise is best for me?

Exercises that help strengthen your muscles and increase your flexibility, such as pilates or yoga, may be good options. Cardiovascular exercises with no risk of falling — some example are swimming or rowing — also could be beneficial to your overall health.

Is there evidence that exercise helps?

A clinical trial (NCT01594853) tested the effect of exercise in 14 women with ALD and 12 healthy age-matched controls.

Women with ALD usually have one copy of the mutated gene and one healthy copy. They are less likely to develop symptoms but may nonetheless have leg muscle weakness affecting gait, spasticity, or muscle stiffness.

The trial investigated changes in the strength of the participants’ hip flexor muscles, which lift up the legs when walking, after an exercise program. Strength was measured at the study’s start (baseline), at the end of 12 weeks (about three months) of exercise, and at 18 weeks (about 4.5 months) after the trial began. The participants were expected to perform individualized circuit training for 45 minutes a day, four to six times a week.

Women with ALD were found to have similar increases in strength as compared with the healthy controls at both follow-up visits. The investigators concluded that exercise can increase strength in women with ALD.

 

Last updated: Dec. 16, 2020

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Adrenoleukodystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Brian holds a Ph.D. in Biomedical Engineering from Case Western Reserve University and a Bachelors of Science in Biomedical Engineering from Georgia Institute of Technology. He has co-authored numerous scientific articles based on his previous research in the field of brain-computer interfaces and functional electrical stimulation. He is also passionate about making scientific advances easily accessible to the public.
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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.
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Brian holds a Ph.D. in Biomedical Engineering from Case Western Reserve University and a Bachelors of Science in Biomedical Engineering from Georgia Institute of Technology. He has co-authored numerous scientific articles based on his previous research in the field of brain-computer interfaces and functional electrical stimulation. He is also passionate about making scientific advances easily accessible to the public.
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