When Robert Mendenhall was diagnosed with a rare disease called amyotrophic lateral sclerosis, or ALS, last April, the news did not come as a complete surprise.

Now 44, the former Racine resident was 18 years old when his mother, Horlick High School teacher Hazel Mendenhall Boyer, died from complications of the same disease. He also had seen his uncle suffer its fate and was aware of the hereditary component that ALS sometimes carries.

No amount of previous experience with the disease, however, could have prepared him for what was to come, Mendenhall said.

"I thought I knew something about living with ALS, since I lived with and took care of my mother. But I have come to find out that I knew very little about what it is like to live with and have ALS," he said.

Also known as Lou Gehrig's disease, ALS is a fatal, neurological illness that attacks nerve cells and pathways in the spinal cord and brain, according to the ALS Association, a national not-for-profit health organization dedicated to finding a cure for and improving the lives of patients with ALS. When these cells die, voluntary muscle control and movement dies with them.

There is no known cure for this illness, which affects between one and two people per 100,000. It is estimated that as many as 30,000 Americans may have the disease at any given time.

And there is more than one kind of ALS. Some cases, like Mendenhall's, are familial, meaning that a chromosome that determines the illness can be passed down from generation to generation. Others are sporadic.

"There are a whole handful of genetic subgroups that are being quite actively investigated right now," said Dr. John Skantz, a neurologist with All Saints Healthcare. "They are all related, yet different in how they present symptoms and when they present."

An early symptom of ALS usually is muscle weakness or stiffness, which often is first apparent in the limbs. Eventually those muscles that control vital functions such as speech, swallowing and breathing also are affected, according to Skantz. In most cases, however, eyesight is not altered.

Classically, ALS was thought to not affect the thinking process, but recent research indicates that its effect on the those processes may be more of a problem than previously indicated, said Skantz, referring to a report in a recent edition of the journal Neurology.

The effects of ALS, however, still are predominantly related to the spinal cord and not the brain, the neurologist said.

In the last seven months, Mendenhall has lost the use of his legs and has lost strength in his upper body. He is totally dependent on a motorized wheelchair and uses a voice-activated computer program to type.

And, even though the nerves in his body are degenerating, that doesn't mean he doesn't feel pain. In addition to pain and stiffness in his joints from lack of movement, Mendenhall's right foot and hand are painful to the touch.

"It is a very difficult disease to adapt to because you are constantly losing the ability to do something more," he said.

A music teacher at a private school in the Boston area, Mendenhall still teaches two days a week, but his activities both on and off the job are made possible only with a great deal of assistance from family and friends.

His wife, Ginny Mazur, cares for Mendenhall in their home and works full time in order to maintain health insurance coverage. A number of friends help by providing transportation, meals and other assistance, and the couple is in the process of trying to get coverage for more home health care services. From showering and dressing to doing household chores, Mendenhall needs help with just about everything he does.

"It depletes everyone's energy to help me, and it is especially draining for my wife," he said. "I am extremely grateful for all the help and support I have."

Current medical treatment of ALS is aimed at symptomatic relief, prevention of complications and maintenance of optimal function and quality of life, according to the ALS Association.

Most ALS patients are given the drug Rilutek, which slows the degenerative process of the disease, said Skantz. It acts as an antagonist against the chemicals that accelerate degeneration in the spinal cord, he explained.

Other drugs are being tested for their effectiveness all the time, but so far Rilutek is the only one that has been approved by the FDA in the last 10 years, according to Skantz. "It is the only thing we have that we are certain works."

Some physicians also recommend vitamins C and E, not only for nutritional enhancement, but for their anti-oxidant properties, which are thought to help slow down the degeneration, Skantz said.

Most of Mendenhall's current treatment is holistic. He did take Rilutek for a while, but didn't like the side effects he experienced.

Instead, he eats a special detoxification-type diet, takes nutritional supplements, has physical therapy and does "energy" work.

Energy work, Mendenhall explained, is a term used to describe several types of healing practices. One of those Mendenhall currently is using is Jin Shin Jyutsu. He described it as a laying on of hands that follows meridian lines similar to those used in acupuncture and acupressure. The idea is that healing should take place on an energy level as well as a physical level, Mendenhall said.

None of his current treatments has proved to change his illness, but they all make him feel better. Before changing to the special diet he had been fatigued all the time, but now he has a lot more energy, he said.

The amount of research devoted to ALS has increased significantly in recent years, said Skantz. Funding for research on a variety of brain-related illnesses really got a boost in the 1990s, which was considered the decade of the brain, he said.

Different theories about the causes of ALS are being tested, but none have yet to be proven. "It is a hard disease to study, in part because of the (rare) incidence of it," Skantz said.

The fact that a relatively small number of people are affected by ALS also makes it difficult to determine what treatments work, he said. The disease's fairly rapid progression also makes it tough to measure a treatment's effectiveness. "It is a difficult thing to know how much a treatment affects the condition unless you have an outright cure," Skantz said.

The neurologist sees hope, however, for a brighter future for ALS patients. "There is a lot of research going on and I see hope for being able to treat the problem as ever improving," he said. "I expect to be able to offer much more than I am able to now."

In addition to the struggles of dealing with everyday life in a degenerating body, Mendenhall and Mazur face an ongoing battle to get insurance coverage for things Bob needs for his care. The HMO they have is better than some, Mendenhall said, but it still only covers very basic things.

"His is a difficult journey emotionally," said Betty Brenneman, a family friend of Mendenhall's who lives in Racine. "And he has to struggle just to get the things he needs for that journey."

Brenneman, who traveled to Boston recently for a celebration of Mendenhall's and Mazur's 10th wedding anniversary, knew Hazel Mendenhall during her years with ALS as well. She described Hazel's way of dealing with the illness as the "most powerful testimony for the gift of life I've ever experienced."

In her last few months of life, Hazel let go of her fears and concerns and became almost luminous, Brenneman said.

"She became increasingly grateful for the experience of life. I think that Bob is doing the same thing for the people that know and love him," she said. "The gift he's given us is to let us inside what is a very personal experience so that we can get a glimpse of what it's to navigate this process."

"Living with ALS in some ways is a lot like living any life, but just living it with more consciousness about details," Mendenhall said. "Of course, it requires slowing down your life and finding the grace and generosity that presents itself every day through the kind actions of many people."