The LEMS Family Association was proud to host our very first LEMS Learn Webinar, featuring Dr. Liz Plowman, a physical therapist, author, and someone with lived experience navigating a neuromuscular disorder. Her session, “Navigating Physical Therapy with LEMS,” offered practical guidance, encouragement, and expert insight into how physical therapy can support people living with Lambert-Eaton Myasthenic Syndrome.
Dr. Plowman began with a brief overview of LEMS and its common symptoms before diving into what physical therapy is, what it isn’t, and how it can benefit people with neuromuscular conditions. She emphasized that physical therapists are movement experts whose goal is to help patients improve mobility, function, and overall quality of life through individualized exercise and education.
Why Specialized Physical Therapy Matters for Rare Diseases
Drawing from both her professional background and personal experience as a patient, Dr. Plowman highlighted the need for specialized training and awareness when treating rare disorders like LEMS. She encouraged attendees to seek out physical therapists with experience in neuromuscular conditions and shared tips on how to evaluate whether a therapist is a good fit.
She suggested starting with a discovery visit or phone consult, asking about the therapist’s experience with conditions such as MS, Guillain-Barré, ALS, or myasthenic disorders. She also noted that it can take a session or two for a therapist to fully understand your individual needs, and that patients should feel empowered to assess whether the approach feels safe, respectful, and personalized.
Choosing the Right Clinic & Advocating for Your Care
Dr. Plowman also discussed how to choose the right physical therapy setting. Factors to consider include:
- Location and accessibility
- Clinic atmosphere and comfort
- Equipment such as aquatics or bodyweight-supported treadmills
- Payment options, including insurance, private pay, mobile PT, or telehealth
A major theme of the session was self-advocacy. Dr. Plowman encouraged patients to communicate openly with their therapists, schedule sessions during peak energy times, and avoid pushing muscles into extreme fatigue. She introduced tools like the Rate of Perceived Exertion (RPE) scale and a “traffic light” system (green/yellow/red) to help patients safely monitor how their body is responding to activity.
Finding Neurological Physical Therapists
For those looking for a specialist, Dr. Plomin recommended starting with the American Physical Therapy Association’s “Find a PT” database, while noting that it is not comprehensive. She encouraged patients to:
- Review therapist websites for listed specialties
- Ask directly about experience with neuromuscular disorders
- Discuss familiarity with symptoms like decreased or absent reflexes, which are common in LEMS
She also addressed secondary issues such as joint and hip pain, explaining that while pain is not a primary LEMS symptom, it can occur due to muscle weakness and imbalance.
Strengthening Muscles with Myasthenic Conditions
Dr. Plowman explained that medical management is essential for enabling muscle strengthening in myasthenic conditions like LEMS. When symptoms are properly managed, targeted exercises can help improve muscle girth and function. She referenced research showing that with the right balance of medication and therapy, patients can safely build strength.
She also recommended periodic check-ins with a physical therapist—often annually—to reassess muscle performance and adjust exercise programs as needs change. For those in rural or underserved areas, she noted that telehealth physical therapy is becoming more widely available.
Advocacy, Communication & What’s Next
Throughout the webinar, Dr. Plowman emphasized the importance of clear communication and individualized care plans. She encouraged patients to speak up about what works, what doesn’t, and how their energy levels fluctuate from day to day.
During the Q&A, participants asked thoughtful questions about finding neurological PTs, managing fatigue, and navigating therapy safely with LEMS. The session ended with excitement about next steps for the community.