More MS news articles for Oct 2001

MS class of 1980

http://www.morningjournal.com

October 14, 2001
JONATHAN KATZ,
Morning Journal Writer

LORAIN -- Sharon Green knew she wasn't alone.

She had heard the rumors for years after graduating from Lorain High School in 1980 -- that more than a dozen classmates were suffering from the same debilitating illness that she was.

Green and at least six other members of the 1980 Lorain High School class were diagnosed with multiple sclerosis, a neurological disease that breaks down the protective coating of the central nervous system and in some circumstances leaves its victims paralyzed.

In 1999, state health officials publicly announced the rural Lorain County village of Wellington would be the subject of a multiple sclerosis study after it had identified 25 MS cases out of the town's 4,200 residents.

The Wellington revelation reignited discussion of MS among the 1980 classmates, and now seven cases out of a class of about 350 have been confirmed by The Morning Journal, plus three additional classmates who say they've been treated for or experienced MS-like symptoms.

That rate, 2,000 cases per 100,000 persons, is more than 10 times the regional average of about 160 cases per 100,000.

Now, instead of just focusing on Wellington, the health departments are putting the entire county under scrutiny to determine whether there is a higher than normal rate of MS in Lorain County over a given period of time.

The study includes anyone who has lived in Lorain County from Jan. 1, 1998, to Dec. 31, 2000, and has been diagnosed with the disease.

The state is using a $66,000 grant it was awarded by the Agency for Toxic Substances and Disease Registry in Atlanta to conduct the study.

The state and county health departments are in the process of identifying people in the county who have MS. After the cases are confirmed through patient records, health officials will compare the prevalence rate in Lorain County to studies being conducted in Texas and Missouri.

The goal is to determine whether the MS rate in Lorain County is higher or lower than in other regions. If so, the next step would be an attempt to determine why, according to Janine Trottier, a communicable disease nurse with the county who will be reviewing the patients' medical records.

The study is expected to be completed by September or October of 2002.

State and local health officials say without further research they cannot speculate on why a disease has affected the Lorain High class in particular.

''I would say that it's something that's rather interesting, but I wouldn't put a label on it without further study,'' said Kenneth Pearce, director of health for the Lorain County Health Department.

Robert Indian, chief of community health assessment for the Ohio Department of Health, said it would be difficult to determine whether there is a connection between the number of 1980 grads with MS.

''You don't have them all clustered together somewhere in a big gymnasium and say how many people here have MS,'' Indian said. ''You have a cohort of people moving through time, so you have to be very careful as to what it is you're trying to measure. Not all the grads have stayed here, and when we do this period prevalence it will be anybody with a clinical diagnosis of MS during that three-year time period.

''I'm not sure as to the best way to estimate how many cases we would expect (from the LHS graduating class), but it is an intriguing idea.''

As state and local health officials continue their mission to gather names of people in Lorain County with MS for their study, many members of the LHS 1980 graduating class are left to wonder how so many people from one class could be stricken with the disease.

Lorain High School closed down in 1995. The building is now Lorain Middle School and about 780 students go there.

The 87-year-old brick structure on the corner of Washington Avenue and Seventh Street near downtown Lorain is scheduled to be demolished in the near future, pending the approval of a city-wide bond issue to rebuild and renovate the district's schools in November.

The Class

In 1980 Sandy Johnson-Haupt thought she knew where her life was heading after high school.

As graduation approached and the ''me decade'' was ushered in, the strawberry-blond- haired Lorain High School senior decided she was going to care for those who were too ill to help themselves.

After graduation, Johnson earned a nursing degree from St. Joseph's School of Practical Nursing and took a full-time job as a registered nurse at MetroHealth Medical Center in Cleveland.

She married classmate Robert Haupt at the age of 23 and gave birth to her first and only child.

But now, more than 20 years later, the girl who once had aspirations to be a nurse on Metro's Lifeflight helicopters, is confined to a nursing home bed where tubes protrude from her body to help her eat and breathe.

At the age of 39, Johnson is easily one of the youngest residents at the Anchor Lodge Retirement Village on West Erie Street in Lorain and has the most severe case of MS from her class.

She was diagnosed in 1993 with MS, and her condition deteriorated immediately.

''It started with her writing,'' said her older sister, Judy Shaw. ''You could see everything slowly leaving her.''

Within a couple years, Johnson could no longer walk, and her career as a nurse was over.

Johnson now shares a 200-square-foot room at Anchor Lodge where only a curtain separates her from her roommate.

Facing Johnson from her bed is a dresser. On it sits a small television and next to that is a greeting card with a teddy bear holding a heart that says ''I love you.'' The card, sent by her younger sister, Joyce, is one of several such reminders on her dresser from family and friends that their thoughts and concerns are with her.

To the left of the dresser, is a cork bulletin board where a collage of written prayers and religious symbols reaffirm her Methodist upbringing.

Her 13-year-old daughter, Heidi, sits on the edge of her bed.

Heidi was 5 when she learned how to suction fluids from her mother's tracheotomy tube and to feed her through her feeding tube while her father was absent.

''I learned by watching one of her old caregivers do it, and my dad was out a lot, so he told me I should learn,'' said Heidi while giving her mother's hand a soothing pat.

Johnson and her family say she and her husband separated shortly after the disease began to progress.

''It stole my life, my love and my family,'' says Johnson in a strained and hardly audible voice.

Her husband, Robert, declined to be interviewed for this story.

Johnson's physical and emotional pain is evident. A grimace overcomes her face while she motions to her sister and mother, who are standing nearby, that her neck is in severe discomfort.

Her mother adjusts the rolled up towel supporting her head while giving a comforting run with her fingers through her daughter's hair.

''I always thought she was going to be a writer,'' her mother said. ''Her father called her Anne Frank because she always kept a diary.''

Her father, William, was an electronics technician in Lorain and died five years ago. Heidi says her mother has inspired her to pursue a career as a nurse.

''I like to help other people, and I enjoy taking care of my mom,'' Heidi said. ''It makes me happy to know I did something.''

Karen Thomas was an active member of the 1980 Lorain High School class. She was a National Honor Society student and member of the ski club, a cappella choir and student council.

Her father died fighting in Vietnam when she was 3 years old. She attended Lorain Catholic High School for her freshman year before transferring to Lorain High School.

After graduation, she moved on to Ohio State where she studied to be a medical records administrator.

A year later, Thomas began to feel some pain in her eyes from an optic nerve irritation and was eventually diagnosed by a neurologist with MS.

Today, Thomas depends on a wheelchair to maneuver around her contemporary Sagamore Hills home. She has not worked since 1989 when she was assistant director of medical records at Southwest General Hospital and said she has not been able to walk in about four years.

Thomas, 39, a gregarious self-proclaimed chatterbox and married mother of an 11-year-old daughter named Kaitlin, is always good for a joke and often makes light of her predicament.

En route to her backyard deck from her living room, Thomas whizzes along in her motor-powered scooter through an obstacle course of pet cats and furniture.

''Watch out, I'm not your typical woman driver,'' says Thomas, referring to her aggressive driving technique.

Thomas, whose maiden name is Watson, says she often experiences confusion when sorting out numbers and dates, which is a common symptom of the disease.

''I call myself stupid, and then say to myself don't listen to my numbers,'' Thomas says in a slightly slurred tongue. ''What helps is that my hair is blond, so I can be a dumb blonde.''

Sitting in her motor-powered wheelchair, the smile from Thomas' face gradually dissipates when she begins to talk about how the disease has affected her livelihood.

''To this day, I still get angry and frustrated because of things I used to do that I can't do now,'' Thomas said. ''I feel like I'm riding my bike into brick wall -- it's just stuck. A lot of my future plans were canceled.''

On a sultry July afternoon, Sharon ''Missy'' Green retreats from a private shaded sanctuary in the middle of the sparsely wooded backyard landscape that covers five acres of her bucolic Wakeman home.

She marches through the tree-covered terrain of her backyard with her 10-year-old son, Matthew, and 5-year-old daughter, Brooke, toward her back porch.

Along the way, several turkeys cackle from a fenced-in pen, which Green and her husband, Kyron, own along with other barn animals such as geese and chickens.

Green, a former standout athlete at Lorain High School and co-captain of the 1979 LHS volleyball team that made it to the state regional semifinals, maintains her toned and slightly sun-baked figure by swimming daily in her built-in pool just steps away from her porch.

After arriving at her porch, Green sits down and starts to recount the days leading up to her diagnosis.

''It was a Thursday -- June 12, 1996 -- my right index finger went numb, and by Sunday night it had radiated to the whole right side of my body,'' Green vividly recollects.

''That Sunday, as I was working in the radiology department in Elyria, I was talking to one of the radiologists and said I don't know what it could be, maybe a pinched nerve?''

Several weeks later, Green went to a local neurologist who diagnosed her with MS.

''When I first found out, I was in shock,'' said Green while choking back tears. ''I was worried that I couldn't take care of my kids, and I didn't want to be a burden to my husband.''

Green says that although MS has impacted her life, she continues to stay physically active for her own emotional and physical well being.

''I swim every day and run 16 flights of stairs,'' she said. ''I want to do it for my health. Just because I have this disease doesn't mean I should exercise everyday for this disease. I do it because it makes me feel better.''

Brian Bernhardt is the only male from the class of 1980 known to have MS. He died in 1999 from an unrelated illness.

And unlike his other classmates, Bernhardt did not graduate. His parents say he dropped out of high school during his sophomore year because his illness made it too difficult for him to function in school.

If any family defined Lorain's blue-collar, working class image it was the Bernhardts.

Brian's father, Richard, worked for U.S. Steel's Lorain plant during World War II. He later retired as a welder at the NASA Lewis Research Center in Cleveland where he had worked for 21 years.

Richard still lives at the home on Iowa Avenue in Lorain where he raised his son.

Richard and his second wife, Geraldine, suffer from several health problems, and the house on Iowa is beginning to show its years, too. The front porch is littered with everything from old chairs and tables to faded newspapers.

Brian wasn't the typical student. Richard said his son was held back in kindergarten because he refused to color with the ''big crayons.''

''He just didn't like them crayons,'' Richard said. ''They insisted he use the big crayons, so he took a scissors and cut up the paper.''

As Brian struggled his way through the Lorain City Schools, his condition began to manifest itself in the form of uncontrollable shaking, physical numbness and loss of consciousness.

''O ne time, he collapsed on the Bascule Bridge and fell into the keeper's tower,'' his father recounted.
 
Brian began treatments for MS, but his parents say the doctors would never give their son a formal diagnosis.

A doctor who treated Brian eventually confirmed that he indeed had MS.

Classmate Mary Nazario, whose maiden name is Van Horn, has worked in the patient accounting department at Community Health Partners since her senior year at LHS.

She was diagnosed in 1989 but still works full time, appears to be relatively healthy and maintains a formula for beating MS.

She said she gave up on medications years ago and hasn't been to a doctor in more than a year.

''I just go about my life like I should the best I can,'' Nazario said. ''I know my limitations now. I've got it set in my mind that I'm always going to be OK, and that's the way I plan on keeping it.

''I have my moments, but I just overlook them, and I know when I've had enough.''

The two remaining classmates who have confirmed their diagnosis of MS declined to go on record with their story for fear that the publicity may hurt future job prospects.

Any discovered link between MS and the Lorain County region or the Lorain High School graduating class of 1980 now rests on the shoulders of state and local health officials.

Pearce says the state's main focus right now is to identify how many people in the county have MS and to determine whether Lorain County's rate is significantly higher than others in the region.

''Seven in 350 is pretty high and pretty significant, but that's just comparing that class,'' Pearce said. ''We may look at this as an outlier -- something that doesn't fit with the case definition -- but something we definitely want to look at."
 

©The Morning Journal 2001