The Benefits of Physical Therapy for ALS

Kristin Neva avatar

by Kristin Neva |

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My husband, Todd, gets twice-weekly physical therapy, which significantly improves his quality of life with ALS.

Six years ago, Todd was having pain in his shoulders, and his elbows would not fully straighten, making it difficult for him to use his wheelchair. His doctor ordered physical and occupational therapy evaluations through a home health agency.

The occupational therapist crafted custom splints to straighten Todd’s arms. She also taught me how to apply kinesiology tape to an ankle he had rolled. We discovered that this also helped reduce the edema in his feet and ankles.

The physical therapist (PT) addressed his pain through mobilizing Todd’s joints, manually stretching his muscles, and working with his range of motion. With the lack of movement that accompanies paralysis, nerves can become tethered, so the PT performed median nerve glides to address Todd’s arm pain.

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Physical therapy proved to benefit him on an ongoing basis, but the agency wanted to discharge Todd after the initial certification period, saying that Medicare doesn’t cover maintenance therapy.

However, I knew that wasn’t true. I brought up the Jimmo v. Sibelius settlement agreement, in which the plaintiffs argued that Medicare claims were inappropriately denied based on an “Improvement Standard.” In the settlement, the Centers for Medicare & Medicaid Services reaffirmed that claims should be approved in specific instances “where no improvement is expected but skilled care is, nevertheless, required in order to prevent or slow deterioration and maintain a beneficiary at the maximum practicable level of function.”

The issue was whether the PT could justify ongoing skilled care performed in-home by an actual physical therapist, such as oversight or some manipulation that cannot be taught to a family member or other unskilled caregiver. In Todd’s case, he needed to have grade-four joint mobilization of his elbows to reduce pain and maintain range of motion. Due to the risk of injury, it’s not a technique that can be taught to family caregivers. It’s not even something that a PT assistant would do.

The agency agreed to continue treatment including the grade-four joint mobilization, and Todd’s PT documented the benefit to his health. At each session, she had Todd rate his pain level and made notes of the improvement he experienced with his sleep quality and the use of his wheelchair and computer. And at each reevaluation date, she measured how far his arms could be straightened using a goniometer.

This month marks the start of Todd’s seventh year of in-home physical therapy, and so far there have been no issues with Medicare. An added benefit of having a skilled service from a home health agency is that Todd is eligible to receive aide services. He has received two showers most weeks for the last six years.

The PT added edema massage to each session and showed me how to massage Todd’s feet and legs between his weekly sessions. She educated us on the importance of supporting Todd’s elbows so the weight of his arms wasn’t pulling on his shoulders. He tried an arm sling for a while, and then he used foam so his arms could rest at a comfortable height on the wheelchair’s armrests.

She treated pressure wounds that Todd developed under his legs, and she told us that we needed to eliminate moisture, which led us to using dry-fit shorts. She showed me how to perform a manual assist cough to clear Todd’s lungs, which has saved his life on many occasions.

After documenting that the improvements from physical therapy lasted two to three days, she moved him to twice-weekly sessions. Though she left the company, a new PT continued the treatment plan, changing some of the techniques to what he thought would work better. He added cervical mobilizations to help Todd better control his wheelchair using a head-array and better operate his computer using a head mouse. He does sciatic nerve glides to keep Todd’s knee pain at bay.

For Medicare purposes, documentation continues to be important. At each visit the PT tracks Todd’s pain level and how well he slept, continuing to justify two visits each week.

Mobile people use their range of motion throughout the day as they walk and reach for things. If they have an achy muscle or joint at night, they can change positions without even waking up. But with paralysis, that does not happen, and it results in discomfort, pain, lack of sleep, and stiff muscles that further limit abilities.

Physical therapy can compensate for the movement deficit and significantly improve the quality of life for people with ALS.

Note: ALS News Today 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 provider 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. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.


Maggie Broeren avatar

Maggie Broeren

Once again, your wisdom and expertise in managing Todd’s care is super helpful. Thank you for this detailed post.
Happy Spring and Happy Easter.
Maggie B

Jennifer O’Brien avatar

Jennifer O’Brien

As always, very grateful for the information you provide, Kristin. Am glad Todd finds relief from these sessions.


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