Anyone coping with myasthenia gravis, or grave muscular weakness, has a valuable outlet on the Grand Strand for more information.
The Myasthenia Gravis Foundation of America’s Myrtle Beach-area monthly support group meets 1-3 p.m. on the second Saturday – including Sept. 9 – in the Lakeside Crossing development’s community room, 140 Lakeside Crossing Drive, Conway, off Myrtle Ridge Drive, just west of U.S. 501. The group is one of only two in South Carolina, the other convening in Mount Pleasant.
The local facilitator, Beverly Watrous, spoke from personal experience in her effort to help others encountering similar straits with mysathenia gravis, and the public is invited to join the group and learn more. Reach her at 843-504-8063, or email firstname.lastname@example.org (Contact the foundation, based in New York, at 800-541-5454 or www.myasthenia.org).
Q: What spurred the start of this monthly support group, besides the factor of long distance to others in larger metro areas with university hospitals such as Charleston and Raleigh?
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A: I started the Myrtle Beach monthly support group because I did not want anyone to ever face the fear, isolation and sense of despair and doom that I lived with for so long. I would go to sleep with my front door unlocked just so emergency medical services responders wouldn’t have to break through the door, that was, if I was able to use the phone when I was in distress.
I was in a constant state of fear that I would stop breathing in the middle of the night, choke on my own saliva, and that my dog would be locked in, uncared for. My dog has been a legitimate, highly trained and qualified service animal for about five years now. Because I couldn’t hold my arm up to grasp a leash, she was trained to walk off the lead, heeling to my left. She also gets medication to a ring tone, picks things up for me, braces me when I’m weak, stops at curbs, and does much more.
Q: How rare and relatively unknown is mysathenia gravis among the public, considering its massive effects on critical, everyday bodily functions that the disease can pose?
A: Myasthenia gravis (MG) is the most common primary disorder of neuromuscular transmission. The usual cause is an acquired immunological abnormality, but some cases result from genetic abnormalities at the neuromuscular junction. MG was once a relatively obscure condition, and people often went years misdiagnosed. ...
In the United States, the prevalence of MG is about 14 per 100,000 people. The most common age at onset is the second and third decades in women and the seventh and eighth decades in men.
Q: What symptoms might arise, prompting concerns about this disease taking over one’s life?
A: Patients with MG come to the physician complaining of specific muscle weakness, not fatigue or tiredness. Double vision and a speech disorder that sounds like a stroke are usually two of the initial symptoms. The speech symptom goes from nasal speech to slurred speech to sometimes paralyzed vocal cords. This is a peculiar symptom because once the individual stops speaking, normal speech resumes but remains only for a few minutes before it becomes nasal, then slurred once again. Oddly, this speech abnormality occurs early on in MG.
Years or decades later, the muscles responsible for speech are weak, but speech is no longer slurred. Speaking just becomes an effort. Speech might be raspy, a whisper, or sound weak. Other symptoms include, but are not limited to, oropharyngeal muscle weakness, inhaling and aspirating on saliva, drinks and/or food, difficulty chewing, difficulty swallowing, drooling, lack of facial expression, inability to smile, droopy eyelids, and difficulty holding one’s head erect. ...
The course of disease is variable but usually progressive.
Q: With the Grand Strand having the fortune, and so many people with caring hearts, through various support groups and events – such as for helping folks rebounding from traumatic brain injury, and camps for youth coping with grief from losses of loved ones – how does this MG support group make its own difference in outreach?
A: I thoroughly understand how many volunteer activity and medical support groups take place in Myrtle Beach and the surrounding areas. However, so many people with MG go for a long time before a correct diagnosis is made. I went 20 years undiagnosed and then misdiagnosed, when I strongly suspected I had MG since the age of 34. Fortunately, physicians now are more informed. We don’t have the exposure or access to qualified speakers that the groups located near the university teaching hospitals have. Yet we have a group of about 15-20, and more people are being diagnosed now.
Contact Steve Palisin at 843-444-1764.