Rare Disease Calls for Distant Doctors
Coping with a rare, life-threatening illness is hard enough, but when that illness is a maze of related abnormalities, the journey seems insurmountable. But Marsha L., diagnosed some 30 years ago with cerebellar vestibular disease and an array of other complications, carries on with the toughness of a soldier and the spirit of an artist.
The 51-year-old Florida resident suffers from severe dental damage, loss of vision and perception, cardiac irregularities, hair loss, and fatigue. Her disease is also accompanied by anxiety disorders. She says her “symptoms started in childhood at around age five and got out of control by 1983-1984.”
Mercy Medical Angels has been providing Marsha with charitable flights to New York for two years. There, highly-trained specialists in her disease, unavailable in Florida, are able to manage her care. Born on Thanksgiving Day, Marsha is grateful for all her “angels”: her doctors, friends who host Marsha in their home when she’s undergoing treatment, and MMA, which she says is a life-saver.
Of all her health challenges, the overshadowing one seems to be the fear of losing her teeth. “I could cope with hair loss (alopecia),” she says, “but teeth loss was compounding and exacerbating my severe and rare dental post-traumatic stress disorder. The stress in turn was worsening my ADHD/dyslexia learning disabilities and Aspergers (syndrome) as well as my anxiety/panic issues caused by cerebellar disease.” Gagging, breathing problems, vertigo, and a tiny, “child-size mouth” (Marsha is a dwarf) contribute to the nightmare of a visit to the dentist.
Fortunately, a hypnodontist (dentist who uses hypnotherapy) in Bellmore, New York is able to relieve Marsha’s symptoms. Dr. Michael Schamis “is expert in my rare conditions and disabilities, and he uses unique treatment not available in Florida.” Schamis says he’s been treating Marsha for 20 years and that with her, “everything clicks. I’m able to do the dental work.” He explains that hypnosis “is not what you see on TV. All good hypnosis is self-hypnosis. It’s a talent of the mind. It’s your own mind relaxing. Marsha responds well. I’m glad she’s progressing.”
Marsha has a network of other specialty physicians in New York to treat her eyes, heart, and neurological problems. “My future is bright and filled with great hope…as long as I can continue receiving the expert New York care that not only keeps me alive but helps me thrive,” she said.
An ex-New Yorker, she relocated to Florida in 2004 for a job transfer. After the company went bankrupt, she got a job as a clerical trainee at a small company that allows her to work remotely when she’s in New York for appointments.
There’s another side of Marsha—an artistic talent that transforms her medical problems into joy and therapy for herself and blessing for others. At home in Boynton Beach, she has a scholarship to pursue both piano and violin lessons as well as free music therapy. When in New York, she plays her violin “for a young father in a coma, and he responds well to me. I helped his mom set up a music therapy program I created while there.” Marsha also plays violin at a hospital [with] a spiritual healing music therapy group.” A music shop provides her with a free loaner violin. She explains that violin playing improves neurological functioning in cerebellar disease patients.
Her musical ability extends into composition as well. Currently, she’s creating a musical suite of songs about the various medical conditions that she herself suffers from and is calling it Music with a Mission. “I’m thinking it’s time to add a new song to this music opus: an anthem for MMA!”