How Can I Help? People with Neuromuscular Diseases Excel at Jobs in Social Work and Counseling

They say one of the best ways to avoid spending too much time thinking about oneself is to concentrate on somebody else's problems. Social workers, counselors, psychotherapists and psychologists make a career out of focusing on the problems of others.

Many people affected by neuromuscular diseases have found fulfilling work performing these roles in society. In these careers, physical abilities are much less important than qualities such as communication skills and the ability to empathize with others.

However, that doesn't mean these jobs are easy.

"Providing psychological/psychiatric services is obviously sedentary, but deceptively arduous work," says psychologist Lisa Kus. "It takes a lot of physical and emotional energy to be present in a healing fashion to those who are suffering."

Some helping and supporting jobs involve doing social work under the auspices of a government agency. Others, such as psychotherapy, can be done from a private practice.

Either way, the education and training requirements are considerable. But the rewards can be equally ample.

Lisa Kus, Clinical Psychologist

Lisa Kus and her service dog, Polo

Lisa Kus, 38, has limb-girdle muscular dystrophy. She grew up in the suburbs of Detroit but now lives in Alpharetta, Ga.

Kus earned her undergraduate degree in psychology at the University of Michigan and her doctorate in clinical health psychology at the University of Miami.

"Originally I wanted to be a medical doctor, probably because I was going to doctors all the time," she says.

"I thought the interesting part of medicine was talking to people about their medical problems and how they were affecting their lives. Were they able to work, were they able to socialize? I gradually figured out that medical doctors don't have time to do that, and that psychology would be my interest area."

She went to California for an internship required by the doctorate program, then worked as a senior psychologist with Ventura County Behavioral Health for many years.

In that position she performed enough hours to earn a license as a clinical psychologist. The license is crucial in that it allows her to bill her clients' insurance companies for treatment.

"What I did was diagnose and treat mental disorders and substance abuse," Kus says. "I did crisis intervention and psychological testing and individual and group psychotherapy. I did education for the staff, and expert testimony for Social Security cases for people with psychiatric disabilities."

Kus encountered interesting reactions to her physical disability.

"People with chronic mental illnesses aren't known for their tact. One patient saw me struggling to get out of my scooter and said, 'Oh my God, Dr. Kus, you are a wreck.' And that was very honest. It was kind of refreshing in a way that he shared the impact of my struggle on him," she says.

"I learned to have more compassion for myself when I was able to give it unconditionally to psychiatric patients. A lot of them had enormous shame over their disabilities and it was so easy for me to see them as the wonderful, worthy human beings that they are."

Kus' advice to others going into the counseling or social work fields: "Be prepared to answer questions from clients about your disability and how it may or may not affect your work together. Provide reassurances, and answer in a way that is appropriate to the client and your level of comfort in disclosing personal information."

Kus found a number of outlets to help her deal with the weight of other people's problems. "I worked very hard to refuel myself by doing things like spending time with friends. I applied to get a service dog. I went to the YMCA after work. I went to cooking classes. I took trips. I started going to church again."

Unfortunately, her career was curtailed. Stress precipitated by intense conflicts in the work environment, combined with the further progression of her LGMD, made it necessary for her to retire early with disability benefits.

She now questions having invested so much time in rigorous training, wondering whether she should have plunged into counseling work after receiving her master's degree and thus enjoyed many more years working.

Yet the time spent earning her Ph.D. allowed her a broader scope for the work she was able to do.

"Going to school is stressful and I think people like myself with neuromuscular disorders need to watch our resources carefully," she says.

"Don't compare yourself to colleagues without neuromuscular diseases," Kus says. "The stress of living with neuromuscular diseases means that we will start and end each day with a smaller pool of physical and emotional resources than our able-bodied counterparts."

Jerry Ferro, Psychotherapist

Jerry Ferro

Jerry Ferro, 49, lives in Casselberry, Fla., outside of Orlando. He has spinal muscular atrophy, which was diagnosed when he was an infant. He uses a motorized wheelchair.

Ferro works as a psychotherapist.

"I call it general psychotherapy with a specialization in disability," says Ferro of his private practice, which he's conducted for 10 years.

"The decision to become a therapist was in part based on the things that I could do. Developing relationships with people is easy for me and I've always been consulted by friends throughout my life, even in high school. So people find it easy to talk to me."

Ferro was a physics major at Southern Illinois University when the Vietnam War was in full swing.

"I was aware that people in physics generally went into research and stuff and developed weapons," he says. "I made a decision to help people."

He changed his major to psychology, then went on to earn a master's degree in rehabilitation counseling at the same university.

After more than a decade of working for the New York Department of Mental Health, he began experiencing respiratory infections due to the cold weather. His doctor advised him to seek a warmer climate.

He left for Florida and set up a private psychotherapy practice.

"I'm a Gestalt therapist," he explains. "In Gestalt therapy, the whole is greater than the parts, meaning there is always a lot more to the client than what we see. A person who is dealing with a disability, for instance, has a lot of other capabilities that they may or may not utilize in solving their problems.

"One of the benefits that we have today that we didn't have back then is computer technology. I use my computer for everything. I have a voice dictation program [IBM Via Voice] so I can dictate my notes instead of typing them in."

Ferro also facilitates an MDA support group in Orlando, which serves people with a variety of neuromuscular disorders.

He says that one of his personal strengths in his private practice is patience, and thus he doesn't become discouraged with clients even when they don't appear to be making progress.

"Clients oftentimes come in with very narrow vision in terms of what they can do and what they can't do, whether they have a disability or not," Ferro says.

"Part of the role of the therapist is to help them explore their lives so they see more than when they came in. In other words, they need to become more aware of what their abilities are, what their strengths are, what their habits are that prevent them from doing the things they want to do. There is a growth process."

Kathy Williams, Social Worker

Kathy Williams

Kathy Williams is 51 and lives in Santee, Calif. She has Charcot-Marie-Tooth disease and has experienced symptoms since childhood, but didn't receive a diagnosis until after consulting MDA at age 30.

Her symptoms over the years have been fairly minimal, however, apart from excessive fatigue.

"I remember coming home from high school at 15 and saying, 'I am so tired now. What's it going to be like when I'm 30?'" she recalls.

Williams remains completely ambulatory and most people are unaware that she faces special health challenges. But fatigue continues to be a problem.

"I have to make sure that at least half a day on a weekend, I just veg, no housework or anything. Then I can make it through the next week."

She has worked for San Diego County since the 1970s in various social work capacities. "The positions that I've had have been more investigative than counseling," she says.

Initially, she worked in the Aid to the Disabled program, later renamed SSI (Supplemental Security Income). She also worked as an eligibility technician, helping to determine which individuals were entitled to welfare benefits.

When she earned her master's degree in social work at San Diego State University, she was promoted to social worker and moved to Child Protective Services, investigating cases of abuse and neglect.

"I work with the whole family. It's a matter of investigating the allegations of abuse and then making appropriate referrals. A lot of times cases are taken up in the juvenile court system."

For Williams, religious faith is a main source of support in dealing with the stresses of the job.

"It's stressful, because you're either rescuing kids out of situations that could be very harmful, or you're helping the families to get the situation under control so they can get back together."

Williams faced a small career crisis some years back when it was announced that all social workers would be getting personal computers and would be expected to type their own court reports.

Because of her CMT, her typing speed is slow. In fact, she went into social work partly to avoid having to do a lot of typing, she says.

"Fortunately, before they got the system in place, I got promoted to supervisor," she says. "So I don't have to type long reports, I just have to read them."

Spencer Conway, Marriage Family Therapist (in Training)

Spencer Conway

Spencer Conway, 55, received a diagnosis of Becker muscular dystrophy when he was a teen-ager. He lives in Santa Barbara, Calif.

"I'm kind of in an awkward stage right now," he says of his dystrophy. "I use the wheelchair some, and sometimes I don't. I have to ramp it into my station wagon. I'm hoping to get a van."

Conway earned an undergraduate degree in geography in 1970. He pursued a number of careers before turning to counseling.

"I was a musician, played the drums for years but physically had to give that up," he says. "Also, I do artwork and sell photography.

"One of the reasons I got into counseling was looking for something with a little more steady income. Also, I've lived a fairly colorful life. I've learned a lot about living, and I'm looking to contribute my knowledge to other people."

Conway took computer and writing classes to prepare for getting a new degree, because it had been 20 years since he'd done any academic work. He hit the books again in the 1990s and earned a master's degree in clinical psychology in 1996 from Antioch University in Santa Barbara.

In order to become a licensed therapist, Conway must perform 3,000 hours of training, a process he's still undergoing. He's done a lot of work with domestic violence.

"I work with the male offenders who have been arrested under the domestic violence laws," he says. It's Conway's job to help them learn to communicate with family members in nonviolent ways.

The problem is, the men aren't there voluntarily and often aren't happy about being there. Sometimes feelings run high.

"I've been threatened, but usually I just remain calm," he says. "I can't run and I can't fight so I just go with it. Usually they run out of steam pretty quickly.

"Usually, most of the people who've done abuse have been abused," he says.

Conway believes counseling is a viable career for people with neuromuscular diseases. "As long as you can speak, communicate, that's pretty much what it requires. The ability to empathize with others is a requirement. A lot of it is listening."

He also facilitates an MDA support group.

"There are lots of different states of people that come to the group," he says. "Whether they've just been diagnosed and are really angry, whether they're losing strength and don't want to recognize it. Or whether they're older members who've been through a lot of things and just want to contribute."

After he's finished his training, Conway will take a written test followed by an oral test. Once he's licensed, he's not sure what his focus will be, although he enjoys working with people with disabilities.

Sherry Somes, Social Worker

Sherry Somes

Sherry Somes, 43, has CMT and uses a motorized wheelchair.

In addition to receiving the CMT diagnosis as a child, she lost both her parents at an early age. Rather than give in to despair, Somes decided to do whatever was necessary to make something of her life.

"No one was going to bail me out of situations if I messed up," she says. "I had to rely on myself."

She has suffered numerous health setbacks during her varied career, but has continually adapted her situation and reworked her goals when necessary.

Somes grew up in Pennsylvania and majored in psychology at a college there.

"Midway through my third year I experienced a great decrease in strength as well as in my ability to walk and use my hands," she says.

Because of the harshness of the Pennsylvania winter, she was prevented from making it to class or even to the cafeteria for meals. "I made the decision to pack my car with all it could carry and move to a place where I would be able to take care of myself through the entire year, not just three of the four seasons."

She relocated to Arizona and obtained a degree as a medical assistant. Further health setbacks prevented Somes from being physically able to fulfill the duties such a position demands. However, the knowledge of medical terminology that she acquired allowed her to work for several years as a senior claims assistant for Arizona Blue Cross/Blue Shield.

An injury in 1982 put her in a coma and allowed her CMT to cause furthering weakening. After a painful recovery, she began work on a master's degree in social work at Arizona State University in Tempe. She earned the degree in 1990.

Somes bought a home and found work as a nephrology social worker at two kidney dialysis centers.

"I did admissions and educated the patients and the families about dialysis," she says. "I arranged the transportation and got the insurance all straightened out. I did counseling and community referrals. It was very rewarding."

She believes her disability is a plus when it comes to counseling others.

"When I tell people that I understand what they're going through, I do," she says.

Unfortunately, due to the continuing progression of CMT she's had to cease doing social work and sell her home. She now resides in an assisted living center in Phoenix.

Somes continues to facilitate an MDA support group that she initiated six years ago. She also does counseling at the assisted living center.