All About Multiple Sclerosis

More MS news articles for April 2003

MS benefit becomes up close and personal

Apr 4 2003 12:00AM
By Denise Heilbrun
Feature Editor
Torrington Telegram

Torrington resident Elaine Bernatow has always been a volunteer in the community. Whether it be with booster club, church happenings, or wherever she is needed, she has given of herself without delay.

Every spring she now turns all her energy toward a cause that is near and dear to her heart. She is the chairperson of the local Torrington Rotary MS Benefit Walk.

Bernatow first became involved with the walk located in Scottsbluff, Neb., with her church group. She said she wanted to get involved in this project because her two neighbors had MS and she wanted to do something to help them.

MS is a disease that attacks the central nervous system and interferes with the brain’s ability to send and receive messages.

Then five years ago Bernatow, herself, was diagnosed with multiple sclerosis.

“It seemed like my world came to an end the day that I myself was diagnosed with MS,” she wrote as she tried to put down into words her innermost thoughts and fears. “I was so devastated that I still cannot put my feelings into words.”

She said she is a very private person and it’s hard for her to tell her story, but, “I am now ready to tell my story and explain why I am so adamant that the money we raise in our Torrington Rotary Benefit go strictly to research.”

Here his her story.

“One Friday morning in August of 1998, I woke up ready to take my morning walk and my eyes just didn’t feel right,” Bernatow said. “I really wasn’t too concerned because I had just had refractive surgery on my eyes and thought they were going through the normal process of changing. The next morning, we were headed to the last Saturday of the Cheyenne Frontier Days rodeo. As I was driving to Cheyenne I notice that I was getting double vision. It started out as very mild, but as the day went on it became definitely double. It looked like two cars were coming at me, one in both lanes.

“I turned the driving over to my husband, Ron, and assured him that I was OK, and we went on to the rodeo. Well, I guess I got my money’s worth because I got to enjoy two bull riders instead of one. To be honest with you, I didn’t enjoy it one bit. I didn’t let on to anyone because I didn’t want to ruin their day.

“I feel for my husband because I am sure it was the ride home from Cheyenne that he will never forget. I could swear that there were cars in our lane coming right at us. He tried to get me to sleep but that was out of the question.

“When I woke up Sunday morning, things were not better with my eyesight. We are talking double vision that the images were at least three to four feet apart. I called my optometrist that I worked for at that time and asked if this was something to expect from my refractive surgery. He said no and that we would check it out first thing Monday morning.

“After having my eyes examined, it was determined that there was something definitely else going on, so he sent me to see my family physician to have blood tests taken.

“As the week went on, and I was waiting for by blood results, my tongue felt numb, my speech was slurred, I couldn’t write with my right hand all the time, and my right leg would drag. I was a mess mentally, to say the least. I wanted to know what was going on and I wanted to know right now!

“My co-workers and bosses at Eastern Wyoming Eye Clinic were wonderful through all my blubbering, crying and being terrified. Dr. (Ted) Church ended up sending me to Dr. Cynthia Ward in Scottsbluff, Neb., where they did more tests, with the last test being a MRI. As soon as I was done with the test, the doctor was in the waiting room with Ron, and I knew immediately something was wrong. It was then she told me I have multiple sclerosis. We did not believe her and she had to tell us again. I am sure she told us a lot of different information that night, but all I remember is that I have MS.

“All I could think about was what my future looked like. All I could think about was my neighbors who had MS. One was advanced to the point that she did not get around much at all and the other did get around but only by the way of a scooter. At that time it did not occur to me that the disease was not an overnight thing, but I couldn’t see past that. My thoughts were what a burden I will be to my family and I didn’t want that. I even told my husband that I would leave because I didn’t want that for him. My thoughts were so irrational.

“I didn’t want to tell anyone because I did not want them to know. How would people look at me? I told very few people the first year, but living in a small town, which I love, word does get out. The first year was still the worst year in my life. The mental roller coaster I was on was unbelievable. After taking some medicine my major symptoms went away, but I still had residual effects for about a year.

“One day I broke down and cried at work and I remember Mimi saying she had no idea that I was having such a hard time with it; she thought everything was OK by the way I acted. Keeping a strong front was probably harder on me than I realized, but that is just the way I am.

“I started taking weekly shots the second year into my MS and have been on them since. The shots cost more than $1,000 a month and that is just for the shots, not the rest of the medicine that needs to be taken. With more research, the cost of the medicine will go down.

“My biggest advocate for starting the shots was my neighbor, Larry Okes. His wife, Janet, was one of my neighbors I mentioned that had MS. He always told me that if the medicine was available early on in her disease, he believes that the outcome would have taken a completely different path. Janet passed away in 2002 from complications of MS.

“When Janet was first diagnosed around 1990, medicines were not available to treat MS. In 1992, new medication was being tested and to be on the program you had to enter a lottery to be able to be selected to be a participant.

“I asked how a person knows if the medicine is actually working? Larry said Janet’s doctor explained this to them – that he always locks his car. Does it not get stolen because he locks it? He does not know, but can only assume so. I will always remember that analogy.

“It is now 11 yeas later, and research has grown by leaps and bounds. Each day we get closer to finding ways to stop the devastating effects of MS and maybe some day we will find the cure. Researchers are still trying to figure out what causes MS, how to prevent it, and why no two people are affected the same way.

“I can only pray that my MS is slow-progressing, which it seems to be. I have had only one major relapse which was last year, four years after being diagnosed, and have decided that I can live with that – like I have a choice, huh?

“I will continue to keep a positive attitude and live life with what is dealt me and make the best of it. Since I was diagnosed, I wanted to find a way to be able to designate all the money raised to go strictly to research and I wanted a walk to be held in the Torrington area, where there is an astonishing amount of people that have MS. I was able to accomplish my goal through a third party, the Torrington Rotary International Club.

“I would like to dedicate this years walk to Janet Okes and Jeannie Swift, both who died in 2002 from MS complications,” Bernatow said.

According to the National MS Society, MS affects about 400,000 Americans and there is no cure.

MS often affects young adults. In most cases, between the ages of 20 and 50. Women develop MS at a rate almost double that of men.

Most healthy nerves are insulated by Myelin. That is the fatty substance that helps messages flow smoothly along the nerve pathways.

In MS, the myelin breaks down. It’s replaced by scar tissue. The scar tissue can distort or even block nerve messages. Body functions become uncontrolled because messages don’t get through properly.

The cause of MS is still a mystery.

But MS may involve:

n An immune reaction – Our bodies have a defense system that destroys invaders like viruses and bacteria. In people with MS, this defense system may start attacking the body’s own cells. It’s not clear what triggers this kind of immune reaction.

n A viral or bacterial attack – MS may be triggered by exposure to a common virus or bacteria.

n MS may involve both a viral or bacterial attack and an immune reaction. The body’s defense system may become confused and attack both the invader and the body’s own cells.

Two of the most common types of MS are:

n Relapsing-remitting – symptoms flare up and then ease or even disappear for months or years

n Progressive – symptoms get steadily worse over time.

Symptoms vary and may include muscle stiffness or spasms; eye problems (vision loss, burred or double vision, etc.); weakness or unusual tiredness; numbness or tingling; dragging of feet, staggering or loss of balance; shaking; poor coordination; loss of bladder or bowel control or sexual problems; problems with memory, concentration or rapid problem-solving skills; speech problems and partial or complete paralysis of any part of the body.

“I just don’t want to be sick, I don’t want my daughter seeing me that way,” Bernatow said. “Last year when I had a relapse when I was in bed, she looked at me like why are you in bed?”

This years walk has been moved to Torrington High School on April 12. The event will also be hosting a bake sale, live auction and a luncheon will be held for the participants, provided by local financial institutions. The Torrington Fiddlers will entertain during the event.

The auction items are displayed at Edward Jones office downtown Torrington.

If residents would like to donate baked goods or more items for the auction call Bernatow at 532-5818 or 532-3431.

Start times will be 8:30 and 9 a.m. for bikes; 9:15 a.m. for runners and 9:30 a.m. for walkers.

This year a walk will begin in Guernsey on Saturday, April 12, beginning at the south fee booth at Guernsey Lake, leaving at 10 a.m. The walk will go along the lake for approximately five miles and refreshments will be available at the end. They are dedicating their walk to Janet Martin who passed away this year from complications of MS. She was in her early 40s and left behind two children and a husband.

The third event taking place will be a karaoke and an auction at the American Legion in Morrill, Neb., starting at 5 p.m. on Saturday, April 26. This function is being put on by Connie Mathison, who also has MS.

All of the money raised at these three events will go 100 percent toward research.

Bernatow is also sending out a mailing, letting residents know what is going on and giving them the opportunity to donate money if they can’t join the walk, attend the bake sale or silent auction.

In Wyoming 1,100 people are registered as having MS.

“That’s not including the ones that haven’t registered, such as myself and Deb (Miller),” Bernatow said. “It seems like it hits in areas like ours ... there’s like a path it takes and researchers can’t figure out what it is.”

In Goshen and Platte County there are 165 people registered with MS and 15 in Niobrara County.

A friend of Bernatow’s, Debbie Miller, 45, has also been diagnosed with MS.

She found out last November and now is on medication for it.

Miller is a registered nurse at public health and is in the process of making plans to go back to school and become a family nurse practitioner at Montana State in Bozeman, Mont.

“Every time I get a pain, I wonder if it’s the MS,” she said. “It was hard when I told my kids. I said just stick me in a nursing home, as long as I have my bed and my things I will be fine.”

She said her kids said they would take care of her and couldn’t believe she said that.

Her son, Jim, told her he would do everything he could to help take care of her,

“But he said, ‘I won’t change your diapers,’” as he tried to lighten the conversation.

“I’ve probably had it for seven years,” Miller said. “But we’ve been treating it as diabetes problems. My doctor thought it was diabetic neuropathy. With the numbness, it could have been.”

“By its very nature the disease is unpredictable,” Miller said. “Research is needed. The studies are very expensive and funding is very limited. Things like this are very important, what Elaine is doing.”

“I don’t know what we’d do without insurance,” Bernatow said. “You think of the people that don’t have insurance and how they have to deal with it.”

Plus, both said the medication is extremely expensive and they would like to set up a fund for people who need help with drug expenses.

“We don’t know exactly how to set that up,” Bernatow said. “We’d have to designate a board and have them decide who and what drugs would be available. We’re not sure of that right now, but it’s something we’d like to check into for the future.”

Last year approximately 250 people joined in the walk and raised more than $11,900 the first year $11,300 was raised.

“This MS Walk is a great chance for our community to come together for a fun-filled event while making a difference in the lives of those with MS,” Bernatow concluded.

For questions call Bernatow at 532-4818, Jeanene Johnson at 837-3095 or Ada Pulos at 836-2631.

© Copyright Torrington Telegram 2003