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Dire diagnosis
By Judy Jenkins (Contact)
Friday, August 29, 2008


Brenda Pitt was in the middle of living her extremely busy life when she received a diagnosis that -- briefly -- stopped her in her tracks.

"I have what?" she asked the specialists at Indiana University Medical Center on June 3, not sure she had heard them correctly.

They gently told the 48-year-old wife, mother of three sons, registered nurse and college student that she has ALS, which is short for Amyotrophic Lateral Sclerosis, more commonly known as "Lou Gehrig's Disease."

Unfortunately, Brenda was all too familiar with that illness. Her eldest brother Owen Dixon died of it only 14 months after his 2003 diagnosis.

She was stunned upon learning she has ALS, but quickly showed her family, co-workers, and many, many friends that while she may have ALS, it doesn't have her.

This spirited woman is such a fighter she makes professional boxers look like sissies. She's also got an amazing sense of humor that puts everyone at ease.

"I'm telling everybody I've got ALS with a 30-year warranty," she said. With God's grace, she intends to battle as hard as she can to be around to see her sons grow up.

Ian is only 7, and next week Avery turns 15 and Evan turns 18. All three are athletes and as their dad Dan says, "We live at ballfields. If there's a net or a glove, we're there."

He retired from the Henderson City Fire Department in July after 25 years as a fireman. Upon retirement, he was assistant chief. He and Brenda have been married 21 years.

She's determined to use this illness as an opportunity to educate the public about ALS and to help raise funds for the ALS Association, which is a not-for-profit organization dedicated solely to winning the war against the disease.

Brenda is asking "10,000 of my closest friends" to donate $1 each to the Southern Evansville Walk for ALS on Sept. 27.

She and her family also are working four hours at Monday's annual Muscular Dystrophy Association Labor Day Telethon which, in this area, is seen on Channel 14 (Cable channel 4).

ALS chapters, like the one in Evansville, carry out "hands on" programs for patients, families and caregivers, and strive to raise awareness about the disease.

ALS is a non-contagious, progressive, neurodegenerative disease that attacks nerve cells in the brain and spinal cord, resulting in muscle weakness and atrophy.

In the U.S., some 15 people are diagnosed with ALS each day. It's estimated that as many as 30,000 Americans have the disease at any given time. According to the national ALS Association, about 60 percent of ALS patients are male, and 93 percent are Caucasian.

Most people who develop ALS are between the ages of 40 and 70, but it can also occur in much younger people.

Half of all people affected with the disease live at least three or more years after diagnosis. Twenty percent live five years or more, and up to 10 percent will live more than 10 years. Five percent live 20 or more years.

In some instances, the disease stops progressing, and in a small number, symptoms have reversed.

Brenda and Dan and the boys are facing this head on, and the couple say that it has reminded them of the importance of making the most of each and every day.

It seems Brenda was already doing that. In addition to being wife and mom, the Henderson County resident is an RN at Tri-State Arthritis and Rheumatology Center in Evansville, where she still works four days each week.

She also is carrying eight credit hours this semester in her quest for her baccalaureate degree in nursing, which she will receive in December.

Brenda said it's evident that the general public is unfamiliar with ALS. She doesn't know how many people have asked her or her family when she's starting chemotherapy or asking if she's having blood transfusions.

ALS, for which there's no known cause or cure, isn't cancer and doesn't utilize cancer treatments. The only drug that has been approved by the FDA for ALS is Rilutek, which Brenda has been told generally extends life expectancy by a few months.

However, an Italian research study has shown the combination of that drug and an older, long-used drug, lithium, has appeared to slow the progress of the disease.

The patients in the 18-month-study "didn't get worse" while using that combination, but also "didn't get better," Brenda said.

She's now on that combination, and hopes to become part of an IU study on the effectiveness of the two drugs.

Brenda noted that Rilutek costs $1,200 for a month's supply, but thanks to the intervention of local pharmacist Jed Dunaway, who worked with her insurance provider, "I only have to pay $30 a month for it."

It was around Christmas that Brenda was talking to a relative on the phone and the relative asked, "Brenda, are you drunk?"

Mind you, Brenda's consumption of alcoholic beverages amounts to two or three strawberry Margaritas a year.

The relative said her voice sounded slower than usual, and slurred.

No one else seemed to think so at the time, but soon it was evident something was indeed amiss.

Brenda subsequently had an MRI and numerous other tests, which turned up negative. In April one medical professional advised her to "take something for anxiety and go to the Emergency Room."

Brenda replied, "This is not an Emergency Room type of thing."

She called Dr. Jeff Selby, with whom she had worked in the Methodist Hospital ER shortly after she received her associate degree in nursing from Henderson Community College.

He made arrangements for her to be seen at the IU Medical Center, where she received her diagnosis three months ago.

ALS is tough to diagnose, Brenda acknowledged, noting that doctors first have to rule out other possible causes.

Early symptoms often include increasing muscle weakness, especially involving the arms and legs, speech, swallowing or breathing.

Brenda's swallowing has begun to be affected, but she jokes that there hasn't been any "Poof and I'm skinny" outcome.

She's rapidly becoming one of my heroes, and I'll describe her the way she described her late father-in-law, who lived with Dan and Brenda and the kids for the last seven of his 98 years.

"He was tough as 25-cent steak," she said.

And so is she.

***

If you'd like to become part of the "Pitt Crew" team that's recruiting walkers and donations for the Sept. 27 Southern Evansville Walk that covers two miles and starts at Casino Aztar Events Plaza at 10:30 a.m. (check-in at 9 a.m.), go to the Pitt Crew website at web.alsa.org/goto/pittcrew

You can also obtain information at www.alsaindiana.org



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