Seeing major improvements thanks to long-term physical therapy

How years of PT have helped my daughter better manage her LEMS symptoms

Lori Dunham avatar

by Lori Dunham |

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“Continuous effort — not strength or intelligence — is the key to unlocking and using our potential.” — Liane Cordes

Physical therapy is often the first step toward renewed strength for those with Lambert-Eaton myasthenic syndrome (LEMS). Even before our daughter Grace was diagnosed with LEMS at age 15, her doctor suggested she start physical therapy.

Although she had all the symptoms of LEMS — muscle weakness, random falls, and difficulty going up and down stairs and getting up from a seated position — the doctor wasn’t able to do much until the diagnosis was confirmed. The only thing he could really prescribe was physical therapy.

The goal was to curb muscle atrophy and encourage restoration of muscle strength. Grace had lost almost 20 pounds in the six months it took to get a diagnosis. She went from being a slim 15-year-old weighing 88 pounds to weighing less than 70 pounds. Much of that weight loss was due to muscle atrophy.

It’s now been more than three years since Grace started physical therapy. I never thought we would continue with it for this long, but it has provided so many benefits for Grace that we can’t bear to give it up. Following are some of those benefits.

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It provides structured time to exercise

Physical therapy provides Grace a structured time to focus on strength training. It is built into our weekly calendar and is prioritized over most other activities. Plus, the accountability encourages Grace to do her prescribed exercises at home. In our case, self-directed exercise would be too easy to neglect, so having a therapist with a plan and clear goals motivates and guides us.

It teaches exercises that target problem areas

Grace has severe core muscle weakness. Her physical therapist has focused mostly on this muscle group throughout her therapy, resulting in noticeable improvements in muscle strength. Furthermore, Grace’s therapist has educated herself about which exercises will produce the best results for a LEMS patient.

For instance, she’s learned that continuous or repeated muscle contractions will increase strength, which isn’t always the case in conditions that cause muscle weakness. The therapist takes that knowledge and applies it to Grace’s treatment plan.

It pushes Grace outside her comfort zone

Grace knows her therapist won’t let her fall, so she’s willing to try things she’d normally avoid at home. For instance, she steers clear of going up or down stairs in most situations. However, she knows physical therapy is a controlled and safe environment, so whether she’s tackling stairs or learning to jump again, Grace is comfortable pushing herself during sessions.

It builds confidence

Physical therapy has helped Grace build confidence in her body again. After her LEMS diagnosis, she no longer trusted her own body to do what it needed to do. Strength training and targeting problem areas have given Grace the knowledge that she can do more than she thought she could.

Overall, physical therapy has been an effective strategy in improving daily functions like walking, which require balance and strength. It helps in the battle against fatigue and has definitely improved Grace’s quality of life.

Note: Lambert-Eaton News 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 Lambert-Eaton News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenic syndrome.


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