MINDING OUR OWN BUSINESS
Business Owners With Neuromuscular Diseases

by Phil Ivory

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ANNETTE JOHNSON: COMPUTER TRADE SHOW OPERATOR

[Minding Our Own Business]
Annette Johnson puts on computer trade sows and auctions.
Annette Johnson is 39 and lives in Aurora, outside of Denver. She grew up in Southern California. She was 24 years old and serving in the Air Force when she realized that some abdominal muscles she had torn weren't healing. She sought medical attention and ended up seeing a neurologist who suspected, and was able to confirm, that she has Charcot-Marie-Tooth disease (CMT). CMT affects the peripheral nerves, causing weakness and loss of sensation in the lower legs, feet and hands.

Johnson received a medical discharge from the military. She started attending the University of Nevada, Las Vegas, working toward a degree in psychology, when her disease worsened. "I was in a wheelchair and I'm not sure exactly what happened, but for a couple of years I was in a very bad way. I couldn't tie my shoes. I couldn't button buttons. I became very depressed. I lost my marriage because of my husband not being able to handle my MD, so I became a single parent. My son, at 7 years old, was pushing me around in a wheelchair and helping me with daily living. "I was on so much medication that I literally couldn't function. I was incoherent and out of touch with what was going on," she says.

Her life went into a turnaround when she stopped relying on prescription drugs and became interested in holistic medicine.

"For about two years, I was able to walk device free, without wheelchair or braces. I'm back in the braces again, but that's OK."

She relocated from Nevada to Colorado a few years ago and, with her newfound sense of well-being, sought a way to focus her energies into a business.

"I'm a very spiritual person and I just asked the universe to provide something for me," she says. "Two days before Thanksgiving, a friend called and said there's going to be a computer show in town, why don't you check it out. So I did, and within four days I was asked to become a partner in a company and I was immediately offered the position of executive vice president and I took it."

The company is Denver Computer Show and Act Now Auction. Denver Computer Show, which has existed for a number of years but came under new management shortly before Johnson was hired, is a computer trade show.

"We put on a show once a month in the Denver metro area, mostly for little Ma and Pa companies. Some are run by disabled people. We rent a building and supply booths, and they bring in their products for the general public.

"The Act Now Auction aspect has to do with companies or private individuals that have overstocked computer items. They can bring them in and place them on consignment. We have an auctioneer come in and auction off the items and then we do all the paperwork and send a check to the person who brought in the merchandise. We're working on an online program that will perform the same trade show and auction functions.

"Also, one of the things our company does which is really important to me is that once a month we donate equipment to nonprofit organizations." MDA's local office in Denver has received donations of equipment through this policy.

Johnson is proud of being involved in the various facets of the company. "I do marketing, public relations. I do all the intakes of donations, some accounting, some legal aspects." She works about four hours a day. Her work schedule depends, in part, on how her CMT is affecting her that day.

The company is still small and growing. She's enthusiastic about its prospects and particularly about its potential to help small business owners and have a positive impact on the community. She certainly feels more fulfilled than she did a number of years ago.

"I can wake up every morning now and say I have a purpose. There was a point in the past when I had a very difficult time just getting out of bed. Now I can lay there and do my body check in the morning, to see where I'm at, how I'm feeling, and I'll be thinking about work. What do I need to do? What's on my agenda today? Which organization do I contact?"

Her company's Web site is http://www.denvercomputershow.com

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JAMES FERREL: EMPLOYMENT CONSULTANT

James Ferrel, 54, lives in Marietta, Ga. He's a native of Wisconsin who came to Georgia in 1992. He worked in sales management for high-tech companies before deciding to strike out on his own. He started his own business as an employment consultant, helping job seekers find new positions and companies recruit new employees. The business is Career Marketing Consultants and can be reached at (770) 592-1090.

After the decision to go out on his own, Ferrel began to experience some neuromuscular difficulties.

[Minding Our Own Business]
James Ferrel has adapted his job search business to a telephone-and-Internet operation.

"The first overt symptom occurred in April of '97," he says. "All of a sudden, I couldn't push off with my left foot when I was walking, and it became progressively worse, until I finally actually started limping. I was a pretty active golfer and played a lot with some friends of mine who were doctors, and one of them said, 'I really want to take a look at that limp.' He examined it and referred me to a neurologist, who completed the diagnosis."

The diagnosis, which came in September 1997, was a shock. Ferrel has amyotrophic lateral sclerosis (ALS), the severely progressive motor neuron disease which often proves fatal in only a few years after diagnosis. Ferrel uses a wheelchair now.

ALS has modified his working methods but hasn't stopped him from continuing the job search and the employee search functions, both of which he pursues throughout the day.

"I had a fairly normal workday until this fall," Ferrel says. "I still work eight, nine hours a day, but now I work out of a bed for about a half a day. I'm all set up with a laptop computer and a phone with a headset on. I go into the office and work in a wheelchair the other half of the day.

"The methodology I use in the job search business is unique. It uses very large databases, targeted direct mail and stuff like that," he says. "I'm basically on the phone and the Internet all day.

"Fortunately, so far, my voice and my swallowing and, for the most part, my respiration haven't really been affected to a point where they would make it difficult to work," Ferrel says.

He feels certain that he'd be worse off now had he continued working for a corporation, rather than striking out on his own prior to the ALS diagnosis. "I'd be on long-term disability, and I'd just be sitting around," he says.

"People with debilitating diseases need to find ways to fill their time other than sitting around and feeling sorry for themselves. I'm absolutely convinced that my work has kept me alive and able to function a lot longer than if I didn't have it. That and my Christian faith. If I didn't have that, it would be devastating."

He's also thankful for his wife, Bonnie. "She's my 24-hour-a-day, seven-days-a-week caregiver. She's just incredible."


JOHN McLANDRESS: SCOOTER MARKETER

[Minding Our Own Business]
John McLandress with his trumpet, scooter and service dog.

John McLandress is 42 and lives in Seattle.

The first serious sign of a neuromuscular problem occurred when he was in his 20s and experienced some unusual muscle cramping while skiing. Then his gait became affected and people started asking if he'd injured himself.

His brother, a doctor, advised him to get a checkup. In 1985, McLandress received a diagnosis of limb-girdle muscular dystrophy (LGMD), a form of the disorder which has a variable progression and which generally causes muscle loss in the shoulders, legs and trunk.

Today, McLandress walks with a cane but also uses a scooter to get around outside. He started a window cleaning business in Seattle in 1982, which he continued after his LGMD diagnosis, despite the physical exertion the work required.

He sold that business in 1989 and busied himself with other concerns for a number of years, including teaching music. McLandress plays and teaches the trumpet. Music continues to provide a secondary income and is one of the most important facets of his life.

After buying an all-terrain, curb-jumping scooter from a distributor named Wheel Care several years ago, McLandress decided he liked the piece of equipment so much that he wanted to try his hand at selling it.

"I started a business called Ability Connection. Its purpose is to help people with access and mobility, but a big part of it is selling these all-terrain scooters."

In 1997, he set up a dealership in his home, where clients can come to see the scooters demonstrated. They can also check out the different models at http://www.abilityconnection.com. The phone number is (888) 323-9777.

"They have a lot of torque and a lot of power to override obstacles that you encounter with a lack of curb cuts or with the hills here in Seattle," McLandress says.

Sometimes he drives in his van to a client's home to do a demonstration, but mounting gasoline costs make it preferable to have clients come to him.

McLandress would like to be hired as a consultant for the city.

"Here in Seattle, they put in all these curb cuts, for I'd say hundreds of thousands of dollars, and they put them in the wrong places. They're not in the crosswalk.

"Architects often have a lot of people advising them who don't ride in wheelchairs. As a result, they end up making mistakes."  .