Womans ordeal began three years ago after diagnosis with multiple sclerosis

Monday, February 07, 2005

Tammy Martin searches for normal daily.

Normal was being able to care for her family, holding a job, doing housework and feeling well enough to get out and do things in the community.

But for the past three years, since the 34-year-old Auburn woman was diagnosed with multiple sclerosis, no day has been what she considers normal.

Here I am 34 years old and I cant work. I had to give up a job I loved, she said, tears streaming down her face. One day I may be able to sit there and work and one day I may not. My mental coordination is off thats one of my biggest symptoms. Im physically off-balance.

Much of the time, Martin looks normal, she said.

Looks are deceiving, she said. People say I look great, like nothings wrong, but if they only knew. I really wish people understood it and what you go through.

Multiple sclerosis is an autoimmune disease that affects the central nervous system, said Dr. Jianhua Zhu, Martins neurologist at Graves-Gilbert Clinic.

Its a degradation on the nerve components, he said. It attacks the brain.

The disease often affects young or middle-aged females, Zhu said.

No one knows for sure what causes MS, he said.

Symptoms of MS depend on its location, Zhu said. Tests used to diagnose the disease include MRIs and spinal taps.

Common symptoms are weakness or numbness on one side of the body, double or blurred vision, painful movement in the eyes, sleep disorders, chronic fatigue, depression, dizziness and unsteadiness, he said.

Martin has many of those symptoms. They leave her worn out by the end of the day, she said.

Im three-fourths numb over my entire body. Sometimes I feel I can picture Alzheimers disease or a mental illness, she said. It seems like my mind goes blank. I forget where Im at and what Im doing. I could deal with the physical part, but the mental part is hard.

MS is frustrating and unpredictable, she added. I take it from minute to minute. I may feel well one hour and the next hour I dont feel well.

Martins ordeal began three years ago when one day, her upper and lower lip suddenly went numb. A couple of days later, the whole right side of her face was numb.

I thought I was having a stroke, she said.

Doctors thought she might have Bells palsy a temporary illness where facial muscles weaken or become paralyzed, usually on one side or shingles. Then Martin had an MRI and saw Zhu, who diagnosed her MS and met with her family to discuss her care.

I had to have lots of steroids, and I had to get a (device) because my veins are shot, she said.

Treatments can come in two parts, Zhu said. For acute attacks, the patient may receive a high dose of intravenous steroids. Chronic attacks require strategies to reduce the attacks, such as daily or weekly injections of medications or finding ways to manage symptoms.

Its for the rest of your life, he said of MS. We cant cure it, but we can halt progression depending on the type of MS the patient has. Sometimes they can get completely back to normal.

Martin hasnt been able to get back to normal. In fact, her first line of treatment failed after a time. She had been getting injections daily, then there was another injection that she got a couple of times a week.

It worked for a while, but then I guess my body got used to it, she said.

Part of it, too, Martin admitted, was that she didnt do everything she needed to do to take care of herself.

Sometimes I wouldnt do it. I wouldnt face what I needed to, she said of the injections. I thought of the MS like a bad cold that it would go away.

Now Martin has five medications she takes daily. She sees an MS specialist in Nashville and she gets monthly intravenous infusions of a drug called Tysabri at Vanderbilt University Medical Center.

I was the second patient to get that at Vanderbilt, she said. Im always looking for a cure. Anything new that comes out, I want to try it.

Having MS has meant giving up other things as well, Martin said.

I have to avoid the heat because it brings on symptoms. Thats hard because I love the sun, she said. They tell you to avoid stress. How in the world … ? Thats just daily life for you.

She sees a psychiatrist to help with the depression.

He helps me put everything in perspective, she said. For example, I want to work. Thats my job work, be a mom and take care of home. He told me to do what I can now and not worry so much about the future.

For Martin, treatment also meant getting support from her family. On days when she feels so depressed that she doesnt want to get out of bed, her relatives gather with her either in Auburn or Bowling Green to help raise her spirits.

My four sisters, my mom and dad they have been wonderful, she said. The depression it bottoms out on you. Sometimes I feel, honestly, theres nothing you can do about it.

Novice Cosby, Martins mother, said learning that her daughter had MS was hard.

It was devastating. All I did for a while was cry. When its one of your children … , she said, her voice trailing off. You really dont think that much about it until it happens to your family. Theres not a day that goes by that I dont think about it and wish she didnt have it.

Cosby said the only way they can deal with Martins illness is by taking it one day at a time together.

Were all close. If one of us is happy, then were all happy. If one of us hurts, we all hurt, she said. Ive taught my children to be close and to love one another.

Martin believes that her 9-year-old daughter, Emily Sullivan, has lost much of her childhood in helping her cope with MS.

I call her a mini mom. This is my pleasure. This is what I have to live for, Martin said, resting her hands on her daughters shoulders. She has helped give me shots. When I say, Mom is having a bad day, she understands that.

MS affects Emilys daily life, too, Martin said.

She wrote a portfolio piece at school about it, Martin said. When I read it, I cried and cried.

Emily said she sometimes cries, too, but not for herself.

I want to say I have it bad, but every day my mom lives with a battle she may never win, she said. Shes been my hero ever since I was born.

Emily was at her grandmothers when she found out her mother had MS.

My mom said everything was going to be all right, but it wasnt. I saw all these doctors notes and prescriptions, and that confused me, Emily said, her eyes filling with tears. I didnt want to go to school. I didnt want to talk to anyone. I was always scared when I went to visit my dad because I was scared about my mom.

The illness has definitely affected the quality of their time together, Emily said.

On my last birthday when I turned 9 my mom didnt feel like doing anything and we had to take her to the hospital, she said. Ill never forget that day.

Now that her mother doesnt need injections, Emily helps her mom in other ways, like with chores. They also get to do some fun things like watching movies together when Martin is having a good day. She said she gets plenty of support from her friends, but that there is nothing like the days when her mom feels well.

When it comes to someone you love, you want to do everything you can to help them, Emily said. Any time I have with my mom is a precious moment. Tomorrow is always a gift. Each day you have to cherish.

Zhu advises his MS patients to seek support from other MS patients, too, because they understand the symptoms better than anyone else could.

They should contact each other to form a support group, he said. Some people have a more debilitating time than others.

MS patient Linda Brown of Franklin wants to make sure that people with the disease have the support they need, so she is starting a support group that will have its first meeting at 6:30 p.m. Monday at Calvary Baptist Church. The group may continue to meet the first Monday of each month at the church, although the time may change.

Im flexible, she said. If everyone calls and tells me when they want to meet, then we can change the time.

She used to attend a support group in Bowling Green before it dissolved.

I realized we didnt have a support group in Franklin, and I had calls from Scottsville and Russellville from people asking about a support group for MS, she said.

Although she was diagnosed in 1987, she said she has suffered from the symptoms since 1978. She saw neurologist after neurologist and had two spinal taps. She finds talking with others with MS helps her, and she wants to help others.

I like to tell how MS has helped me to be a better person a stronger person, she said. This will be a happy group.

Martin plans to attend the support group meetings.

Its just unreal. Unless youre going through it, its hard to comprehend, she said. It helps to talk to someone whos been there and done that.

She longs for the day when her life returns to normal.

I look around and see people doing things I used to be doing. Its hard to deal with, she said. I want to get up, cook breakfast, take care of my daughter, go to town. Im looking for a better day a better future.  Daily News ·813 College St. ·PO Box 90012 ·Bowling Green, KY ·42102 ·270-781-1700