by Amy Tesolin-Gee, Midland, Michigan
Several FSHD patients, family members, and FSHD-experienced clinicians came together in Ann Arbor on June 4, 2016, for an educational meeting including lots of helpful, informal discussion time. Many people traveled a good distance, and some drove from as far away as northern Michigan and Columbus, Ohio.
Lynnette Rasmussen and Laura Damschroder shared invaluable lessons learned during their four-year experience working together—Laura, as a patient with FSHD, and Lynnette as a certified Pilates and occupational therapist. Their experience has revealed an effective approach to finding muscles Laura had thought were lost. Lynnette has explored ways to target lost muscles to maximize Laura’s independence and mobility.
After working with Lynnette just a handful of times myself, I am inclined to describe her as a muscle whisperer. She combines her 40 years of experience with a keen ability to tune in to her client’s individual needs, effectively tailoring therapies to meet them.
Laura, an internationally known researcher in her field of healthcare implementation science, loves traveling the world and maintains a very active lifestyle in spite of FSHD. She stresses the importance to everyone of moving even just a little bit. For example, start with walking slowly on a treadmill or around your living room for five minutes each day—or whatever you can do—then gradually work up from that.
Through weekly half-hour sessions with Lynnette, Laura has gained subtle increases in strength, particularly in muscles she thought were gone. It should be noted that Lynnette’s approach differs from traditional physical therapy regimens where large muscle groups may be targeted at once. Her approach with Laura involves working the severely affected muscles, such as hamstrings, with subtle and focused exercises to bring them back to life. Even such small functional increases in these and other muscles deemed lost have led to noticeable improvement in Laura’s balance.
Besides exercises, Lynnette uses kinesio tape to stabilize and activate muscle groups. Laura noted that sensory feedback she received from the taping of her hamstrings helped her feel more grounded when she left her workout sessions. It is thought, Lynnette explained, that the action (coils) of the tape help to recruit the various muscles of the taped area.
Laura shared that in 2010 a doctor recommended she get a scooter, and all indications were that she would soon need a wheelchair. However, she has remained stable since working with Lynnette over the past four years, even gaining a half point on some of her muscle strength assessments during annual neurology visits. It is important to note that even though the measured improvements in her large-scale strength assessments have been miniscule, she feels and functions considerably better than she did in 2010, and her disease progression appears stable.