MS fighter won’t give up

For Janis Grause, who likes to be called Nanny, as she is known by family, it started with temporary blindness. There was no apparent reason why her eyesight vanished on two separate occasions over the course of one year.

Once her vision appeared to be restored, she began experiencing unexplainable knots in her feet. Then the left side of her body began going numb. Cold weather seemed more frigid and enhanced her symptoms, and hot temperatures left her exhausted even when the typically active young woman sat idle.

Following a two-week hospital stay in 1980, for testing that included a spinal tap, Nanny at the age of 31 was diagnosed as having multiple sclerosis.

“I didn’t even know what MS was,” Nanny said during a kitchen conversation at the home of her nephew and Terrebonne General Medical Center nurse Danny Castell.

Identifying Affliction

MS is an unpredictable and often disabling attack of the nervous system, particularly in the brain and spinal column. It is a condition in which the protective sheath around the nerve is damaged to the degree that it causes nerve malfunction, generates both pain and numbness, prompts involuntary muscle movement, and can shut down the function of any given part of the body without warning.

Neurologist Don Gervais of the Southeast Neuroscience Center in Houma confirmed the comparison of MS damage to the nerve to peeling away part of the insulation around an electrical wire. With the hot copper wire exposed, the results of arcing and short-circuiting can be unpredictable, uncontrollable and dangerous.

MS is one of those conditions of mystery because it can manifest itself differently in each patient with times when the ailment is not apparent and other times when it is completely disabling.

“Even with people known to have MS, you can have 10 attacks and only one will be apparent,” Gervais said. “Nine out of 10 [brain] lesions are silent.”

Once a number of symptoms appear, the patient will undergo a series of examinations ranging from simple balance and walking exercises to blood tests, electromyography and MRI sessions.

“Diagnosing MS has been revolutionized with the MRI,” Gervais said. “The MRI can pick up white matter lesions in the brain. [Diagnosis] is kind of a phenomenon of observation. It can be silent 90 percent of the time. Then it hits.”

Nanny is among approximately 400,000 people in the United States and more than 2.1 million worldwide living with the debilitating condition that has no known cause and manifests itself differently in every person diagnosed.

“But I’m doing pretty good,” Nanny said as she held the arm of her husband, Ken, whom she credits with helping her walk, remain stable both physically and emotionally, and tirelessly researches MS to remain informed.

A cure for MS patients has eluded researchers. However, certain medications can reduce the frequency and severity of attacks, and slow both the accumulation of brain lesions and may even slow progression. According to Gervais, the cost of treatment for MS can range from $1,500 to $3,000 a month.

Support Efforts

This is where Castell said organizations like the MS Society and events like their two day, 150-mile bicycle ride between Hammond and McComb, Miss., slated for Oct. 1 and 2, come into play.

Castell, 45, admits to always having admired his Aunt Nanny and Uncle Ken and how they have always done for others. He now considers them his inspiration to participate in this fundraising event.

“About three years ago I began riding bikes just for exercise,” Castell said. “[One day] I ran into some people I knew [riding bicycles as a group] on Bull Run Road at Wilson’s Country Store.”

That group consisted of members of the Cajun Country Cyclists club. “They told me, ‘This is great. You can train for the MS 150. It’s a ride out of Hammond. You go 75 miles one day then 75 miles the next day,'” Castell said. “I thought, ‘This guy’s nuts.'”

It did not take long for Castell to decide to join the Cajun Country Cyclists, train for the ride and, thinking of his aunt’s condition, dedicate his effort to her. His wife, Nicole, has now joined Castell in training as a cyclist and plans to take on the MS 150 next year.

National MS Society Louisiana Development Manager Jessica Aubin said that more than 1,000 cyclists are expected to participate in this event and are on target to raise more than $650,000 to assist both researchers and patients battling MS.

“The ride begins at Southeastern Louisiana State University [and] travels north 75 miles to Percy Quin State Park,” Aubin said. “There are six rest stops along the route that provide food, water, Powerade, and bike shop support.”

Guide vehicles also travel with the cyclists with medical support if needed.

“This is a great ride for a great cause,” said Cajun Country Cyclists Vice President Shannon Atkinson. “We have every level of athlete in our club, from kids to one guy that is 83 years old. Our emphasis is no one being left behind and we are glad to participate in this and other fundraising rides.”

Ken and Nanny said they are impressed with how many people have offered support to help fight MS both as groups and individuals.

Attitude and Ability

“He’s a good man,” Nanny said of Ken with a sound of adoration in her voice, as she noted his watching after her and keeping her going.

“We didn’t know what MS was [when his wife was first diagnosed],” Ken said. “We went to a bunch of seminars. We are always learning something.”

MS patients have periods when the ailment seems to subside, only to return with familiar or new manifestations and create new challenges in living beyond the condition.

“It comes and it goes,” Nanny said. “I can tell it is getting worse. I’ve had it a long time and I am fortunate that I am still capable of walking. I need help, but … it’s just hard to start, but once I start walking it’s OK. But I need help to get started.”

Lifestyle adjustments for MS patients often mean recognizing their limitations and knowing when to comply. “I definitely need to stay out of the heat,” Nanny said. “I don’t get in and out of the [bath]tub anymore, I have to have a little bench to sit. If you close your eyes, you bobble [because of a lack of balance related to the loss of feeling on the bottom of the feet].”

Among her physical challenges Nanny admits having increased difficulty with mobility. “Some people ask, ‘Why don’t you use a cane?’ I don’t have the strength in my hands to use a cane.”

Ken said that his wife no longer drives because her reaction time has deteriorated as the MS has progressed. “One day, she wanted to drive and get her hair done. I said, ‘No’. So, I was driving and down the block someone backed out and didn’t look so I had to hit the brakes really hard and fast. She wouldn’t have had the quickness to stop the car. She would have plowed right into them.”

Nanny said she has learned to have an attitude of recognizing her limits, but not being confined by them and not being concerned with what others might think. “It’s better to laugh about something than complain about it. I feel fortunate for what I have. There are others worse off than me. Some people with MS can’t walk at all. Some can’t speak.”

“You can’t buy your health,” Ken said. “All you can do is keep going.”

Castell said that as long as his aunt is around he intends to help her in return for her helping him as he grew from childhood into adulthood. He, like many family members of MS patients, has learned by watching others.

Not only has Castell learned about the mysterious ailment, but he has learned the importance of not letting it stop you. “We try to keep moving and stay active. Hopefully we can conquer it,” he said.

The one certainty for Nanny is that she intends to keep her attitude positive and along with her family, friends, fellow MS patients and event participants, fight this condition with the goal of making life better for someone else.

“I do what I can,” Nanny said. “If I can’t do it, I don’t get upset. You have to keep trying.”

Terrebonne General Medical Center nurse Danny Castell dedicates his participation in the two-day, 150-mile Bike MS tour to his aunt Janis Grause, who is determined to continue living beyond the limitations of multiple sclerosis. MIKE NIXON