Doug Trower noticed he wasn't walking normally — his step had a slap to it as he walked from the parking lot to work. It seemed like everyone was passing him by.

Granted, he was in his late 60s, but he was the type person to be doing the passing, not the other way around.

The Lancaster man visited a neurologist who couldn't diagnose him. Trower complained to a physician friend, who examined him the next day and told him he had CMT — Charcot- Marie-Tooth.

The disease, a type of neuropathy, is named after the three doctors who discovered it. Gradually, the peripheral nerves in the legs below the knees and arms below the elbows stop sending messages to the muscles in those limbs, and the muscles lose all their strength.

"It's pretty much a secret," Trower said. Many people don't know about it, including health care professionals, said Rachel, 21, of Ephrata, who also has CMT.

Rachel, who asked that her last name not be used, said she has had to explain the disease to her family doctor and various therapists. "That gets disgusting."

According to the Charcot-Marie-Tooth Association, CMT is the most common kind of inherited neuropathy. One in 2,500 people around the world is affected by it, some quite severely, according to Pat Dreibelbis, director of program services for the association.

Nevertheless, Dreibelbis said, CMT is largely an invisible disease. To observers, a person with CMT might "walk funny" or have "hands that don't work quite right," but most people wouldn't guess the person has CMT.

The disease is largely unknown except to the people who feel its effect, Dreibelbis said. In Trower's case, the slap in his foot was a sign that his muscles were already affected.

At first, Trower said, he was embarrassed to have the disease. He would lean against the bar at the country club with a drink in his hand because he'd rather have people think he was tipsy than disabled.

He soon gave that up and admitted to having the disease. He fought to keep on golfing for the next 16 years, in spite of falling numerous times on the golf course, until two years ago when it became impossible. Sadly, he said, dancing is no longer an option either.

Now, at 77, he uses a pair of leg braces that come to his knees and a walker to get around his home and his Smith Barney office, where he is a stockbroker.

"It makes it more difficult to do the things I do, but not impossible," he said. "It doesn't stop me from doing my job or seeing my grandkids."

The walker comes at the insistence of his children, Trower admits. His son, Scott Trower, said his father had too many falls without it, and the elder Trower doesn't have enough strength in his arms and legs to get up again without help.

Trower is fortunate. He did not get the disease until he was older. The average time for CMT to appear is puberty. Some, like Rachel, were even younger.

Rachel was 5 years old when she was diagnosed with CMT. She had drop-foot — she lifted her knee high to avoid tripping. She also was over-treading her ankle and falling a lot.

Her mother took her to the pediatrician then a specialist, who diagnosed Rachel immediately. She started wearing braces that she hides under socks.

Ice skating, which many of her friends enjoyed when the ponds froze, was not an option, so her friends pushed her around the pond on a chair.

Rachel couldn't do typical active kid activities, like bike riding or roller blading — any activity that required strength in her lower legs and balance.

By fifth grade she was walking on the outside of her foot and her fingers were locked in a "claw" position. Surgery relieved both conditions, Rachel said.

Now, at 21, she works in customer service where the most customers notice is that her wrists hang down. She is training to be a medical transcriptionist.

She's learned to compensate for many things she can't do with her hands — like twisting off bottle caps and opening soda cans and zippers — by using her teeth.

Rachel said she doesn't think much about how the disease will affect her in the future. Every once in a while, she will talk about how life would change if she had to be in a wheelchair, her mother said.

As for children, Rachel's not thinking about that yet, she said; however, it is a question that many young people with CMT will have to face because the disease is often hereditary.

The attitude with which people approach the disease seems to be related to how much the disease affects them, said Dreibelbis.

The people who face it with dogged determination, figuring out a way to go on with life, tend to fare better than people who sit on sofa and give up, she said.

One strategy for staying mobile as long as possible is to make sure the muscles in the upper legs, stomach, back and shoulders stay strong, said Dreibelbis. Those muscles can compensate, in part, for the ones that are not working.

Trower said if he had it to do over again, he would do as much exercise as possible, maybe even get a pool.

Trower takes heart in the knowledge that although the disease is not fatal, it rarely affects cognitive function, and it seldom progresses past knees and elbows.

He and Rachel are grateful that they do not have pain with CMT, although many people do take medication for the pins-and-needles sensation, accompanied by stabbing pain, that is common to neuropathy.

Trower is hopeful a cure is in sight — not for him, he said, but for younger people. Many of his financial contributions go to the CMT Association's $10 million research project, STAR — Strategy to Accelerate Research.

Trower's hope isn't unrealistic, Dreibelbis said. Effective therapies for three common types of CMT could be available within five years. Within 10, the association believes researchers will be able to reverse symptoms for some people.

E-mail: lespenshade@lnpnews.com