Longtime MS sufferer inspires new patientsWritten by Brandi Barhite | Community Ombudsman | firstname.lastname@example.org
Sharon Cox of Holland wants those who are newly diagnosed with multiple sclerosis to live for tomorrow.
“Do what you can and live a good life,” said the 54-year-old veteran of MS. “Taking the medication is the biggest thing, but don’t be afraid of life. MS is not a death sentence.”
Cox was diagnosed with MS nearly 30 years ago. Medication and knowledge about the disease were limited then, and MRIs to help diagnose the disease weren’t even around, she said.
“I didn’t know anything about MS. Ignorance was bliss. It was just, ‘OK fine, we will just get through it.’”
Cox was pregnant when she found out she had MS. Her right leg was totally numb and got worse until her sixth month, when hormones from the pregnancy helped her feel better, which is typical for women with MS.
A turning point for Cox was when a new medicine in the early 1990s, Betaseron, slowed her flare-ups. Cox said advancement in medicine gives hope to those who are newly diagnosed.
Robert Hannon of Toledo was diagnosed in May. The 50-year-old postal carrier has participated in MS: Bike-To-The-Bay for years because of his passion for bicycling and to support the cause. He never thought his participation would become personal.
“I told a friend of mine, who is disabled, that I always thought I was an open-minded and giving person, but you don’t really realize what it really means to be disabled until you are really personally affected.”
Hannon woke up in the spring and had no feeling from his knees down. He thought it was a pinched nerve and went to a chiropractor, who said he needed to see a neurologist.
“It’s not normal. I don’t know how to explain it,” Hannon said. “It is a pins-and-needles sensation and a tightness; it sort of feels like a too-tight bandage.”
Hannon continues to work, but it is challenging because he delivers the mail on foot.
“It is quite a change,” Hannon said. “You really have to look at things a little differently. The amount of effort put forth seems much more extreme afterward. Fatigue is a huge issue. I have to plan things according to a different standard.”
Cox said it’s OK to limit activities. MS patients shouldn’t apologize for their choices, either. Make the best decisions possible with the information available at the time, she said.
“It was my choice not to be pregnant again,” Cox said. “Other women have made the choice to become pregnant more than once. Some have seen their symptoms progress, and others have not seen them progress much at all. Likewise, some women who have never been pregnant have had their symptoms progress for no known reason. That is the hardest part of MS. It is very unpredictable.
Cox and Hannon suffer from relapsing-remitting MS. People with this type of MS experience clearly defined attacks of worsening neurologic function. These attacks, called relapses, flare-ups or exacerbations, are followed by partial or complete recovery periods during which no disease progression occurs, according to the National Multiple Sclerosis Society.
Cox said in the beginning when her exacerbations would clear up, she would think she didn’t have MS. But the flare-ups would return, and one time, she remembers staying in bed for one month.
“Our son was really good when he was little, and when his friends were over, he would say, ‘We have to be quiet today because mom doesn’t feel well,’ ” Cox said.
“When I was first diagnosed, and Andy was a baby, he was my motivation. If I could just get through this and raise him, that would be fine.”