As soon as I saw this question posted by one of my students on my Facebook page, my mind whirled in rewind mode, mentally trying to retrieve & recall past experiences with patients over my last 22 years as a physical therapist.
But first, for those unfamiliar with ALS (amyotrophic lateral sclerosis), it is also called Lou Gehrig's disease, after the famous baseball player who contracted it. Contemporaries may better recall the great physicist, Stephen Hawking, who has a motor neuron disease related to ALS.
ALS, is a disease of the nerve cells (neurons) in the brain and spinal cord that control voluntary muscle movement. The neurons waste away or die, and can no longer send messages to muscles. This eventually leads to muscle weakening, twitching, and an inability to move the arms, legs, and body. The condition is progressive & slowly gets worse. When the muscles in the chest region stop working, it becomes hard or impossible to breathe on one's own.
ALS affects approximately 5 out of every 100,000 people worldwide. In about 10% of cases, ALS is caused by a genetic defect. In the remaining cases, the cause is unknown (1).
If one would depend only on allopathic medicine, then the only treatment indicated, medication and palliative care, may help one slightly (if at all) endure the inevitable decline. But fortunately we live in an age of growing interest, acceptance and belief in alternative means, hence the popularity of fields such as Functional and Integrative or Complementary Medicine. This gives hope to those afflicted with ALS, especially since 90% of the cases are not genetic & of unknown cause.
Between my wife & I, we have successfully treated people with upper motor neuron disease & injury (stroke, multiple sclerosis, paraplegia, etc), as well as those with lower motor neuron diseases like polio with Fascial Stretch Therapy (FST).
ALS falls into both categories, so muscle twitching (fasciculations), cramping, paralysis & other problems combined with weakness, make it difficult to gauge or see satisfactory progress until at least 3 sessions are done (& it is often closer to 10). Using PNF (proprioceptive neuromuscular facilitation) during stretching must be used judiciously if at all, as a person with ALS has abnormal reflexes, while PNF was originally developed for patients with polio (lower motor neuron) disease. People with upper motor neuron diseases respond very differently & in my experience, PNF does not work well with them. Amazingly, one patient I had that was born with cerebral palsy (an upper motor neuron disease) did very well with increased intensities & durations of passive stretching, especially when using FST technique & philosophy (e.g. traction-slow oscillation-circumduction).
Precautions included but not limited to:
- Difficulty breathing
- Difficulty swallowing
- Choking easily
- Head drop due to weakness of the neck muscles
In summary, the best advice is to go slow, be ever mindful & present. Listen to the tissue & "give it what it asks for". Be patient, keeping in mind fascial anatomy & physiology principles, but also being intuitively open to new experiences & possibilities, as you & your client travel the path of hope & transformation together.
(PS - if any of you has any practical experience in successfully using therapy - whether it is manual, movement, nutritional or whatever - on people with ALS, then please feel free to add your comments here too, so we can do whatever we can to help these people have a better quality of life. Thanks.)
(1) Feldman EL. Amyotrophic lateral sclerosis and other motor neuron diseases. In: Goldman L, Ausiello D, eds. Cecil Medicine. 23rd ed. Philadelphia, Pa: Saunders Elsevier; 2007:chap. 435.
LIABILITY DISCLAIMER: this blog post merely serves as the author's opinion & therefore it does NOT serve as medical advice. No blog post can serve as a consultation, diagnosis or complete advice without the involved person seeing a health professional & having a complete exam. Consequently any advice on a matter or person contained in this blog post must be construed only as opinion and information and not as professional advisement. Therefore any claim of liability is hereby waived and no responsibility whatsoever is assumed by following the opinions stated in this blog post.