October 1st marks the first day of National Physical Therapy Month, a time to raise awareness of the key role that physical therapists play in helping people improve mobility, find relief from pain, and live healthier, more physically able lives.
Members of the ALS multidisciplinary care team, physical therapists are critical for a person living with ALS. As the disease progresses, most people gradually lose their ability to use their arms and legs as their muscles weaken. Physical therapists help patients maintain as much independent function and functionality as they are capable of at different points throughout the disease to improve their quality of life.
“Physical therapy as a practice helps people improve their mobility and function by determining what limitations need to be addressed and how best to address them,” says Renée Hetzler, PT, DPT, physical therapist at the University of Rochester Medical Center’s multidisciplinary ALS and Huntington Disease Clinics. “Physical therapists are movement experts. We guide people towards their goals of being able to do any activity that is important to them by using exercise prescription, education, and equipment recommendations.”
While physical therapy cannot halt the inevitable loss of muscle strength for people living with ALS, the practice can help them maintain as much independent function patients are capable of at different points throughout the disease progression. Therapists often prescribe equipment such as braces or walking devices early in the disease that help people maintain the ability to walk longer.
“As weakness progresses, we recommend a variety of other equipment to help with transfers, being able to get in and out of bed, being able to use the bathroom safely, and getting in and out of cars,” she said. “We discuss any home modifications that may be necessary as the disease progresses, keeping in mind that it is best to plan ahead with a rapidly progressing disease.” When people lose the ability to walk, they also help them get into custom wheelchairs that will help keep them comfortable while allowing them to continue to move around on their own.
Dr. Hetzler says they also prescribe exercises such as moderate strengthening to maintain function and stretching to help reduce joint stiffness and pain. “As a person becomes more reliant on caregivers, we help educate caregivers on the best techniques to help them take over the responsibilities of stretching, transfers, and performing basic daily tasks safely,” she said. “Our ultimate goal for people with ALS is to help them maintain function and quality of life as the disease progresses.”
To learn more about how to improve mobility while living with ALS, visit our website HERE, or download our resource guide, Functioning When Mobility is Affected by ALS, HERE.
my dr advising me therapy dont work.
Hi Carolyn. While physical therapy cannot halt the inevitable loss of muscle strength for people living with ALS, the practice can help them maintain as much independent function as possible at different points throughout the disease progression.
The phy. Therapist and dr. at the als clinic at cleve clinic also did not recommend phy. therapy after I Inquired about it.
I am a caregiver for my husband who is living with ALS. The doctors, even the multidisciplinary ALS specialists, don’t recommend anything I have found. If you don’t find it yourself and ask, repeat, and insist, you won’t get anywhere. It’s as if the medical community goes deaf when you say it’s ALS. Nothing we can do, so sorry, be comfortable and please exit the arena. This is a tragic circumstance for so many. Doctors need to be proactive in working with individuals at different stages of disease and be willing to try and at the very least advise and provide the limited information that is available. They also need to pay attention to affected individuals and their families if anything is to be learned about the cause(s), commonalities among patients experiencing, develop potential early interventions and therapies. To the medical community- this disease is terrifying. Don’t shut the door on hope and living life for people who are scared and seeking some reassurance and sense of empowerment in the face of this cruel disease. Physical therapy? Absolutely. Everyone can benefit from physical therapy. Good luck in your journey.
I understand TH'S frustration with the medical community on the ALS treatment front. I was diagnosed with ALS (they are almost positive) beginning of 2022. Bulbar onset was supposed to be a quick demise for me but here I am one year later. I have a science bioscience and chemistry background and at 68 have been in great health til this. I have been asking about physical activity and the limitations I should practice to keep the muscle that I have as long as possible. I get conflicting responses but all tell me that I should " know when I am doing too much" . Of course if I cannot get the muscle to respond I am doing too much. But ...how much is too much if the body is still willing and able? I lost the use of my right ankle before I realized that I could possibly keep the use longer if I insist on stretches and physical therapy. My pt says to just do what makes me happy but does not offer any therapy.
I got afo for ankles but now they are over taxing my large thigh muscles, The orthotics man I went to made sure I have the correct foot size orthotic but did not address the potential for other muscle fatigue or loss when using the afo. I think that I am going to have to make the management of my ALS symptoms a research project. Fortunately there are lots of people interested also and Google (don’t really want to go down the rabbit hole) but my medical experts are not in tune with what this disease can do and not willing to try and understand each individuals nuances in the patient’s health care. OUPS I went on too much. Thanks for those out there who care to respond.
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