MS support group helps disease sufferers cope

Anyone who has lived with a physically debilitating disease knows how difficult and heartbreaking it can be. The inability to get around easily or perform the simplest everyday tasks, like getting dressed and eating, can be disheartening.

Now imagine what it would be like if those around you, even family and friends, questioned whether your illness even exists because of your periodic appearance of evident good health.

This is what many sufferers of multiple sclerosis deal with on a day-to-day basis. That’s why former teacher Bettye Wooden started an MS support group, which meets from 2 to 4 p.m. the third Saturday of every month, except December, at the Smoot Classroom at River Park Hospital, where she and fellow MS sufferers like Kelly Vander Zeyden and Holly Magness can get together to discuss new treatments, helping others deal with MS, and basically living with a disease that many, even in the medical field, don’t fully understand.

‘We want to get the word out there is somewhere to go for people who are new to this, like myself, I’m under two years diagnosed,’ Wooden said. ‘Many of us deal with misdiagnosis of our symptoms for years before we are correctly diagnosed.’

To understand how this happens, one has to consider how the disease operates and the wide range of symptoms it can generate.

According to information on the National MS Society Web site, multiple sclerosis is a chronic, often disabling disease that attacks the central nervous system (CNS), which is made up of the brain, spinal cord, and optic nerves. The progress, severity, and specific symptoms of MS are unpredictable and vary from one person to another.

MS typically strikes first between the ages of 20 and 40. Initial symptoms can include blurred or double vision, red-green color distortion, or even blindness in one eye. Patients experience muscle weakness and difficulty with coordination and balance. Most patients also experience numbness, prickling, or a ‘pins and needles’ sensation. Other common symptoms are speech difficulties, tremors, and dizziness. About half of all people affected with MS experience difficulties with concentration, attention, memory, and depression.

For many years the disease was misunderstood, but fortunately today new treatments and advances in research are giving new hope to people affected by the disease, and MS affects individuals from all walks of life. People like actresses Annette Funicello and Terry Garr, who wrote a book on the subject, singers Lena Horne and Donna Fargo, talk show host Montel Williams, country music star Clay Walker, rock music icon Ozzy Osbourne and former Rams football player Roman Gabriel.

Wooden says the local MS support group offers a number of vital services to MS sufferers.

‘We’re trying to educate people about MS,’ Wooden said. ‘Help them with things they might be having difficulty with, provide a place where they have somebody they can talk to about their aches and pains, or maybe find out about new treatments.’

All three women say one of the most frustrating aspects of the disease is its unpredictability, leading to a lot of misunderstandings about sufferers.

‘We’ve had people confront us about our use of handicapped tags,’ Magness said. ‘But we never know when the symptoms will hit and we may find it very difficult to get back to our vehicle.’

Vander Zeyden explained about how MS sufferers can experience debilitating symptoms with no warning.

‘What causes the symptoms is lesions that are on the brain or the spinal cord,’ Vander Zeyden said. ‘Depending on where they’re at your symptoms can be mild or devastating. I lost the sight in one eye.’

Wooden and Magness say MS is still misunderstood.

‘People think you have muscular dystrophy when you say you have MS,’ Wooden said. ‘People don’t realize it’s a totally different disease. Certainly muscular dystrophy is debilitating, but MS can be even more damaging and life threatening.’

‘Muscular dystrophy is your muscles,’ Magness added. ‘Multiple sclerosis affects your nervous system. If you got a lesion on the part of your brain that affects your heartbeat, it could kill you.’

Wooden invites everyone suffering from MS, and their families and friends who want to learn about the disease, to attend the support group meetings.

‘We’re very lucky that River Park provides a place for us to have these meetings, and we’re very grateful,’ Wooden said.

For more information on the Warren County MS Support Group contact Wooden at 473-5044.