“To Live Their Lives to the Fullest”—Physical Therapists as Part of an ALS Multi-Disciplinary Care Team

Odds are you’ve had some interaction with a physical therapist (PT) in your life. Most of us have had sprain, strain, or something that needed some help to heal right. To make sure that happened, your doctor prescribed a few sessions of PT to make sure you were doing your exercises, and doing them correctly.

October is National Physical Therapy Month, a time when we celebrate those in the physical therapy field for all they do, including the vital role they play for people with ALS and their families.

Whitney Roper (PT, DPT, ATC) is a physical therapist with the Department of Neurology, Washington University School of Medicine. As the physical therapist at the Washington University Neuromuscular Clinic, she is part of the multi-disciplinary team that serves people with ALS in our community. As we near the end of National Physical Therapy Month, we asked her to share some insights on her profession and the role it plays for people with ALS. Here’s what she had to say:

What is the PT’s role as part of an ALS multi-disciplinary team?

Physical therapists are vital members of the mobility team for a person living with ALS. As ALS progresses, most people will lose their ability to use their arms, legs, and even respiratory muscles as their muscles gradually weaken. Physical therapists help patients maintain as much independent function as possible throughout the disease to improve their overall quality of life.

How much interaction is there between the PT and other members of the team? How much does what you are doing inform the treatment of others, and vice versa?

People with ALS get the best care from a team of specialists from many fields of medicine. Our team works together to help manage symptoms, avoid complications when possible, and live as best you can with this devastating disease. We at Washington University are collaborative and work so well with one another as a multi-disciplinary unit. In addition to working with one another within the clinic, we also meet weekly to discuss our current caseload and regularly review treatment plans to maximize outcomes of all our patients.

What unique challenges does ALS create for a PT?

With ALS, symptoms may appear gradually over time, or they may occur rapidly and then plateau. This is why it is important for the physical therapist to assess patients at each multi-disciplinary clinic visit and to adjust patient’s care plans accordingly.

We know that every case of ALS is different, but what are some things you try and reinforce in your first meetings with a person with ALS?

I really try to first be a listening ear, to build rapport with patients, and assure them that we as a team will walk with the patient and their families along their unique journey in dealing with ALS. I also define independence versus modified independence with patients and assure them that utilizing an assistive device such as a cane or a walker is not a “sign of weakness” but rather a sign of “maintaining independence.”

What are some questions or concerns you hear from people with ALS or their families as part of your work?

Most initial questions center around what to expect as the disease progresses, both for the patient and for the patient’s caregivers. First and foremost, I think just being an active listener for patients and families really goes a long way. ALS will affect the roles and responsibilities of family members. Caring for a loved one with ALS can make recreation, chores, and even employment difficult or impossible to maintain for the primary caregiver. We must recognize that we are not just caring for the patient with ALS, but we are caring for their family unit.

How does the role of a PT change for a person with ALS over the course of the disease?

Physical therapy is a vital component of the ALS multi-disciplinary team. Yes, there is not yet a cure for ALS. Yes, ALS has the potential to be rapidly progressive. However, physical therapy that is tailored to each individual and their needs and goals, while focused on addressing symptoms and maximizing function and participation, will enable all patients living with ALS to live their lives to the fullest and with the quality he or she desires.

What are a few things your role as a PT that you think might be misunderstood by the public?

Despite a lack of a cure and the rapidly progressive nature of the disease, ALS is still a TREATABLE disease, you just have to shift your focus and shift your goals. Recently, there is increased literature to support specific elements of rehabilitation for patients living with ALS, thus supporting a growing interest in this topic. We have to understand that optimal, healthy, and productive living is paramount to all, regardless of disease state. Optimal, healthy, and productive living for our patients with ALS is particularly essential.

Thank you Whitney for helping us learn a bit more about physical therapy and the role it plays in care of people with ALS, and thank you to all the PTs in the ALS community who work tirelessly to make a difference in the lives of people with ALS.

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