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Photo by Sam Yu
Members of Joe's Team participated Oct. 31 in the ALS Walk in Baker Park. In front ready to roll in their wheelchairs before the start of the walk are, from left, Joe Ferguson, Joe College and Jason College. |
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A year ago, Joe College was driving a truck for a living and moonlighting in commercial balloon setup for ReMax.Today, he's dealing with ALS, also known as Lou Gehrig's disease. College walks with a limp, but mostly uses a wheelchair or scooter to get around. Amyotrophic lateral sclerosis is a neurological disorder that causes progressive muscle weakness and attacks nerve cells and pathways in the brain and spinal cord. College and Joe Ferguson are the team leaders of Joe's Team, a team of about 40 walkers who participated in last month's ALS Walk at Baker Park in Frederick . College, 55, lives in Frederick . Ferguson, 48, lives in Middletown . Both were diagnosed with ALS within the past year. ALS can strike anyone, at any age, although it's most common among men ages 40 to 70. Each year, 5,000 new cases are diagnosed in the United States. Five percent to 10 percent of cases are hereditary. College's grandfather died of ALS in 1978. Still, he was surprised to learn that the breathing problems he was having were caused by ALS. College's first symptom came last Thanksgiving. He was having trouble breathing. "I thought I had pneumonia," College said. He went to the emergency room at Frederick Memorial Hospital. Doctors suspected ALS, but didn't have definitive proof. College was in and out of the hospital in the weeks after Thanksgiving. On Jan. 10, specialists at Johns Hopkins Hospital determined his diaphragm was paralyzed. One percent of ALS victims have this as the first symptom, College said. ALS is diagnosed by process of elimination. "The nerves deteriorate," College said. ALS and Joe College ALS moved quickly for College. "I worked right up until the day before Thanksgiving," he said. "I like to tell people, being self-employed, I worked eight days a week." He hasn't worked since. "I got so sick, I couldn't go to pick up the money that was owed to me," he said. In the months before Thanksgiving, he noticed a few physical problems. "I think other people noticed I wasn't up to par," he said. He was a local trucker, hauling goods up to 500 miles. Last Thanksgiving was a rough day for College. He had taken his girlfriend to the hospital earlier that morning for a blood transfusion. "I brought her home and started dinner, and went back to the hospital," he said. He's been on oxygen ever since. In January, he learned about the ALS Association D.C.-Maryland-Virginia chapter support groups, and joined a group that meets in Rockville. Joan Deye, a nurse volunteer, runs the group. "They have developed a little band of friends," Deye said. While it meets in Montgomery County, members come from Union Bridge, Mount Airy , Monrovia , Funkstown and Hagerstown. College met Ferguson. Most took part in Joe's Team. "I can't find words to describe this support group," College said. The support group gives members a reason to go out, when they may not feel like it. "Some people who are diagnosed accept the fact that they're sick and try to be outgoing, while other people have trouble accepting the fact that they're ill," he said. College recalled his grandfather's last days. The family did not know he had ALS. "I knew my grandfather had withered away," he said. He died in 1978, when College was a young man. He died of infections from bedsores, but the autopsy revealed ALS. "He was a strong man," College said. "He had his own mechanic's shop." He invented a radiator overflow system. He also built racecars for College's uncle. But the last three years of his life, he spent in nursing homes. College drove until recently. "Joan suggested I not drive, but I said no," he said. "Then I went out and had two accidents that week." They were minor, but enough to persuade College to give up what he once did for a living. Between insurance and the ALS Association, College and the others in his support group are able to get the wheelchairs and other equipment they need. College can walk with difficulty, but uses a wheelchair when he needs to travel over rough ground. He puts his 9-month-old granddaughter on his lap every afternoon and takes her for a walk. "We go to Baker Park and feed the ducks," he said. He's put 90 miles on his wheelchair in two months. In August, his son, Jason College, took him to the Flying Circus Airshow and Hot Air Balloon Festival in Virginia. Joe had to remove his oxygen to ride in the hot air balloon, something he had done many times before developing ALS. His son also arranged for him to ride in a 1941 open cockpit Stearman biplane. "I decided to make every day count," College said. He travels to Pennsylvania about once a month, where his family is from, to fish or visit family. The ALS Association is helping him get a portable oxygen machine so it will be easier for him to travel. ALS and Joe Ferguson Joe Ferguson, 48, is a married father of two who lives in Middletown . He had a good job as a painter for the maintenance department at Frederick Memorial Hospital. "I was having trouble climbing the ladder," he said. This started in August 2008. In December, two brain aneurisms were discovered. These were unrelated to ALS, but a neurologist at FMH suspected he might have ALS. "Nobody wants to look at you and say, 'Hey, you have ALS,'" he said. "But I knew something was wrong with me." Although he was having trouble working, the hospital kept him on their payroll until a doctor told him he could no longer work and he was medically retired. He is being treated at Hopkins. Ferguson has two sons, Josh, 7, and Charles Joseph, 12, and two older children from a previous marriage, ages 21 and 24. His family has been watching out for him, and his youngest son has taken on the role of caretaker. "I can have a hard time getting dressed, and my wife is getting ready to help me, and my 7-year-old says, 'That's my job.'" His wife, Michelle, works at FMH as an emergency room technician, and the hospital has been flexible with her hours if she needs to take off. Ferguson uses a cane to walk, and recently had a feeding tube inserted to help him eat. He is in the process of getting a wheelchair from the ALS Association. "I can still taste and chew some food," he said. "I do choke a lot. I have a suction machine. I can't swallow that good." He and his family went on a cruise to the Bahamas in August. He decided the family needed to have a good time together while he was still physically able to go. "I could sit, and we all had a good time," he said. "The kids loved it." He is thankful for what he has. "I'm going to last as long as I can possibly last, hopefully a couple more years," he said. "I'm not going to give up." Life is good Joe's Team is accepting donations for ALS research through the end of this year. College is sure the group will raise $10,000. It is because of ALS that he learned to use the Internet and began connecting with fellow ALS patients and supporters. Jason taught his dad how to use a computer. ALS can be expensive. Patients need wheelchairs, walkers and canes. They also need oxygen machines and machines to help them eat. Carlos Urroz, the assistive technology manager for the ALS Association DC-Maryland-Virginia chapter, makes sure patients have the machines they need. He is helping a patient in Hagerstown use a computer that he operates with his eyes. "We're one of seven chapters in the country that has this," Urroz said. Researchers are looking into brainwave technology to help ALS patients communicate. For College and Ferguson, this equipment is free, but it's expensive. That's why College is so determined to raise donations. From the ALS Society, College has received a folding ramp for his house, a power wheelchair, a power scooter for short trips, a shower chair and a power lift recliner. "Putting yourself in that wheelchair is hard," College said. "But when you do that, you have so much more energy." He still has a lot of arm strength, and he's determined to do what he can. "I cannot lay flat," he said. "That's probably what I miss more than anything. There's these little things. If something is on the floor, and I bend over to get it, I lose my breath." He can't button pants or shirts, so he wears sweatpants and pullovers. He wears shoes with Velcro straps. "You can fight the fact that you can't do something, or you can accept it," College said. "The emotional toll is indescribable," he said. "You think more about who you're leaving behind. I'm not afraid to die. Once you come to terms with your own mortality, there's a big burden lifted. I am spiritually free. I am a much more content person. Most people concentrate on living, but don't think about life."
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