Living

Multiple sclerosis patient starts self-help group for disease victims

Ernie Tate, who has multiple sclerosis, and his sister Carolyn Mann, who has rheumotoid arthritis, both use scooters to get around.
Ernie Tate, who has multiple sclerosis, and his sister Carolyn Mann, who has rheumotoid arthritis, both use scooters to get around. Courtesy photo

Ernie Tate was in his early thirties when he first began showing signs of multiple sclerosis, although neither he nor his doctors knew it at the time.

The disease, which affects the central nervous system, has a range of symptoms that can vary widely from person to person, often making it difficult to diagnose. Those symptoms include difficulty walking, overwhelming fatigue, muscle spasms, vision problems and others.

“I woke up one morning and I could barely see,” Tate recalled, “after having better than average or normal eyesight.”

His vision later returned, but was weaker than before. Then he became nearsighted. Other symptoms appeared slowly over time before he eventually was accurately diagnosed.

Multiple sclerosis, or MS, is a disease in which the immune system attacks the myelin — or protective shield — that covers the nerves. It disrupts the signals the brain sends to the spinal cord and to other parts of the body. No two people suffer the same symptoms in the same order, nor does the disease progress in any two people the same way.

People with MS are somewhat isolated. The uniqueness of these symptoms and their consequences makes it difficult to explain to others what you are going through and in many cases leads to depression, a primary symptom of MS, which is why a self-help group is so important.

Ernie Tate

After the initial episode, Tate returned to work and, in the years that followed, continued on the fast track in sales, working his way up the corporate ladder. He soon began noticing a weakness in his legs, especially on his right side. He developed something called foot-drop when one foot tends to drag, making it difficult to lift one leg as quickly as the other.

“It started affecting my gait, the way I walked,” he explained. “I used to play a lot of tennis and over time you start tripping and it progresses from there.”

He also began struggling with fatigue. Soon all of the symptoms combined, made it more and more of a challenge to continue to work and keep up with the same fast pace he’d always maintained both in life and on the job.

“It got a little bit worse and a little bit worse and they really couldn’t figure out what the heck was going on,” he said. Finally, in 1990, he was diagnosed with multiple sclerosis.

Darlene Goudy also suffered symptoms long before anyone put a name to her condition. She remembers the first sign more than 25 years ago when she was in her late twenties.

“I had severe back spasms and I couldn’t even walk,” she explained. “My husband had to get me to the emergency room.”

A year later, she developed optic neuritis which she says doctors attributed to migraines. In time, her vision problems were followed by excruciating rib cramps, then leg cramps, all of it explained away as something else.

“Oh, your potassium is low,” she recalled being told. “It wasn’t until I changed doctors and they put all of the symptoms together that they began to suspect MS.”

373 the number of people estimated to be suffering from MS in Horry County, according to the National Multiple Sclerosis Society

In fact, Goudy just received her actual diagnosis less than two months ago. She is one of an estimated 2.3 million people affected by MS worldwide, nearly half a million in the U.S. (The numbers are all rough estimates as there’s no national registry for those with MS.)

In South Carolina, more than 4,500 people are believed to have the disease, while in Myrtle Beach the number is an estimated 686, according to numbers from the National Multiple Sclerosis Society.

What causes MS remains a mystery. While studies suggest some genetic risk factors may increase the chances of someone getting it, there is no evidence the disease is inherited. And although it’s not clear why, more women suffer from MS than men. In fact, the number is as high as two to three times as many.

For now, there is no cure for MS, although there are medications that can reduce the number of relapses, help manage symptoms and slow the progression of the disease to some degree.

Tate, who lives in Myrtle Beach and has volunteered with the National Multiple Sclerosis Society for many years, including serving on its Government Relations Task Force, felt the time had come to start a local self-help group.

“People with MS are somewhat isolated,” he said. “The uniqueness of these symptoms and their consequences makes it difficult to explain to others what you are going through and in many cases leads to depression, a primary symptom of MS, which is why a self-help group is so important.”

He started the group, sponsored by the National Multiple Sclerosis Society, in July. Sixteen people attended the first meeting at the Chapin Memorial library. Goudy was among them.

54 the number of people estimated to be suffering from MS in Horry County, according to the National Multiple Sclerosis Society

“With this disease being new to me, I’m trying to understand it piece by piece and break it down so it’s not overwhelming because it certainly can be overwhelming for those who are diagnosed with it,” she said. “The meeting definitely provides emotional and practical support for anybody who attends.”

In addition to offering support and encouragement, Tate sees the group as a way to help educate those struggling with the disease. He wants to bring in guest speakers such as a physical therapist planned for this month’s meeting.

“They’ve found that exercise for MS is extremely important. So she’s going to talk about how to determine what regimen is right for you because again, everybody with MS is different.”

The meetings will be monthly at the Chapin Memorial Library, 400 14th Ave. N, Myrtle Beach. The next one is set for Aug. 22 at 11 a.m. There is no cost to attend. For more information, you can call 843-213-1423. Tate says anyone with MS is invited to attend.

“It’s just good to talk to somebody who can understand what you’re going through.”

For more information about MS, visit www.nationalmssociety.org.

By the numbers

More than 4,500 people have been diganosed with multiple sclerosis in South Carolina through July, according to statistics compiled by the National Multiple Sclerosis Society.

4,583 | total number of diganoses in South Carolina

13,557 | total number of diagnoses in North Carolina

181 | total number of diagnoses in Brunswick County, N.C.

373 | total number of diagnoses in Horry County

54 | total number of diagnoses in Georgetown County

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