Local woman battles Lou Gehrig's Disease

In this four-part series, the Tribune-Courier takes a closer look at the lives of four local residents who say their experiences at Marshall County Hospital were life-changing.

GILBERTSVILLE– Barbara Sams is a fighter.

Three years ago, she fought to rebuild her life after her home was blown away from its foundation and completely destroyed in the November 15, 2005 tornado.

Now, she is fighting for her life after being diagnosed with Amytrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s Disease.

She describes the past few years as nothing short of “awful.”

“I knew something was wrong when I started falling for no reason at all,” Sams recalled.

“My legs would just give out right under me. I was so weak, I couldn’t even walk.”

Sams’ mysterious ailment appeared just a little over a year ago while she and her husband were rebuilding their home.

Since that time, her symptoms have progressed, resulting in a near complete loss of use in her hands, total body muscle weakness and damage to her speech.

It took doctors more than four months to figure out what was behind it all.

“I was going to Marshall County Hospital and they were trying everything they could think of to figure out what was wrong,” she said.

But very generalized symptoms make ALS difficult at best to diagnose according to the ALS foundation.

Lou Gehrig’s disease doesn’t always begin or become worse in the same way.

The disease is believed to be different for every person who has it. In general, muscle weakness, especially in the arms and legs, is an early symptom for more than half of people with ALS.

Other early signs are tripping or falling frequently, dropping things, having difficulty speaking, and cramping or twitching of the muscles. As the disease gets worse over time, eating, swallowing, and even breathing may become difficult.

It may take several months to know for sure that someone has Lou Gehrig’s disease. The illness can cause symptoms similar to other diseases that affect nerves and muscles, including Parkinson’s disease and stroke.

It was eventually determined by physicians at Marshall County Hospital that Sams’ symptoms were related to neurological issues.

She was sent to Western Baptist Hospital in Paducah where nerve testing lead to her eventual diagnosis.

Most commonly associated with famous baseball player, Lou Gehrig, the disorder is predominantly characterized by a progressive loss of a particular type of nerve cells in the brain and spinal cord which are responsible for the control of muscles under conscious control.

A patient who suffers from the rare disorder faces a slow degeneration of muscle use which in time can prove fatal.

Sams said in addition to falling, she started to see rapid changes in her everyday abilities.

“I used to love to be up and doing things. My husband and I did a lot of the rebuilding of this house, I even got to the point where I was moving furniture in. Then one day, I just couldn’t do it anymore.”

Due to her deteriorating condition, Sams said she has had to become reliant on a walker and utilizes a motorized wheelchair on occasion.

Once while reaching for a package left at the front door, Sams lost her balance causing her to fall, landing outside of her front doorway.

“We were getting freezing rain that day and I knew if I didn’t get myself back in the house, I would freeze to death. I got turned around and managed to drag myself back in the house and scoot on my bottom over to the phone to call my husband.”

Ironically, when she was settled enough to open the package she had been trying to retrieve, she realized inside, was the Life Alert medical notification device she had ordered.

Sams said with a giggle, “I wear it everyday now.”

Performing daily tasks such as cooking are also nearly impossible for the once self described, “do it all” kind of person.

Efforts to revitalize muscles in her hands through a physical therapy regiment at Marshall County Hospital have been unsuccessful to date.

The obvious frustration of such takes it toll, Sams said.
“I really am a do-it-myself kind of person. If I see something that needs to be done, I just get up and take care of it. It is very frustrating to have a brand new house and not be able to keep it clean like I used to.”

Sams also cares for her 91-year-old uncle. “It is a lot of responsibility taking care of him,” she confessed. “But I wouldn’t have it any other way.”

Through it all, Sams has not lost her sense of humor.

“I remember when my kids started to notice that I was having trouble. They said I needed more exercise, but I knew it was more than that,” Sams said. With a knowing laugh, she said, “you know, you just can’t tell kids anything.”

She said of the tumultuous past few years, “there have also been blessings along the way.

“This has brought me much closer to my daughters. Not that we could have been much closer than we were, but it is different now.

“They come to see me as often as they can and help me with things I can no longer do on my own. My husband and friends have also been Godsends to me. I can’t thank them enough.”

For all of the adversities Sams has faced in the past few years, she is remarkably upbeat about life in general.

“This disease slowly takes everything away from you, but I am not going to let that be a downer for me. I know that one day I will wake up and my legs will not work anymore, but until that day, I am going to keep on going.”

Sams is making frequent trips for evaluation to an Indianapolis facility where a team of 20 doctors assess her condition and advise her on how to get the most out of her life at this point.

“I have always been a believer that your days are numbered here on earth. When it is your time to go, it is your time to go. Until then, I am going to live my life the best way I can, and that is not to sit here and worry about tomorrow.”

“The first time I went to Marshall County Hospital was an Emergency Room trip. They were so nice and so wonderful to me. The staff was very caring. Since I became ill, I have gone there for testing and for physical therapy. They are so tuned in to their patients. My experience that night in the ER is what convinced me to go back again.
Even my uncle goes on and on about what a great hospital we have in Marshall County. When he had to go in, they treated him so well. They knew exactly how far they could go with their treatment and when they reached their capability limit, they sent him to Paducah. That means a lot to a family. Every experience I have had there has been great. They always remember me by name when I am there. I have been in several hospitals in other areas, but none of them could even measure up. I keep kidding them, “now don’t you go changing just because you are getting a new hospital!”

Barbara Sams