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Turtle chairman learning to live with rare disease
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| From left: Pam and Dan DeLong stand with ALS Association Wisconsin Chapter Patient Services Director Lori Banker-Horner and Patient Services Coordinator Robin Stanczyk. Dan DeLong is learning to adapt to the changes of living with ALS, also known as Lou Gehrig’s disease. Staff photo by Hillary Gavan |
By Hillary Gavan
Daily News staff writer
TOWN OF TURTLE - Town Chairman Dan DeLong doesn't need to ride a bull or go sky diving. Since he's been diagnosed with Amyotrophic lateral sclerosis (ALS), he just wants to spend time with friends and give others inspiration.
Now that DeLong is getting used to life with the disease, he is becoming more open about what has happened to him since his diagnosis.
Often referred to as “Lou Gehrig's disease,” ALS is a progressive neurodegenerative disease that attacks nerve cells in the brain and spinal cord resulting in muscle weakness and atrophy. Some diagnosed will live two to five years and others may live 10 or more years.
DeLong first noticed something was wrong while he was playing softball in June of 2007. He noticed some weakness and assumed he was out of shape. When DeLong tried to run in August, his legs seemed to have a mind of their own and he began to notice some muscle twitches.
Although he went from doctor to doctor, he still didn't get a conclusive diagnosis. Doctors had to rule out other muscular nerve diseases.
DeLong finally found out in February of 2008 that he had ALS, something he knew little about. Doctors told DeLong that only one in 230,000 people get ALS, although there are no formal registries yet.
Another challenge is that there aren't many treatment options for ALS. Those with the disease can take Rilutek, a drug that holds off the end stages of the ALS. Any medications typically treat the symptoms, not the root of the disease.
Although there may only be 30,000 in the U.S. living with ALS at one time, every 90 minutes someone is either diagnosed with or dies from the disease, according to Lori Banker-Horner, patient services director with The ALS Association, Wisconsin Chapter.
Dealing with the unknown has been a challenge for many diagnosed with ALS. Although DeLong was doing pretty well using a walker and cane this summer, he had to think ahead and look into buying a motorized wheelchair and a special handicapped accessible van.
“Attitude is everything. It's absolutely critical. Some people don't try to adapt. There are people who will fight the illness, but we want people to stay three months ahead with equipment. It takes awhile to get equipment and wheelchair,” said Robin Stanczyk, patient services coordinator with ALS Association Wisconsin Chapter.
DeLong has found many ways to adapt.
When his arms became weaker, for example, DeLong found a solution for using a cell phone. He mounted it to an iPod holder, which is tied around his wrist.
DeLong is glad his wheelchair can move up and put him at eye level with others.
“It puts the person who is handicapped at a comfort level and also puts the people you are talking to at ease,” DeLong said.
DeLong doesn't have ALS in his family, but the majority of ALS cases seem to happen spontaneously. However, DeLong sometimes wonders if he got it after taking cholesterol medication. Although no connection has been proven yet, researchers are looking into the connection between certain medications that may lower peoples' resistance to the disease.
Despite the disease, DeLong said he's working with his abilities as opposed to his disabilities. Other residents attending board meetings will often offer to drive DeLong to meetings.
Because some people are nervous and don't know how to approach him, DeLong said he makes sure to make the first move and engage people in conversation, something he's known for.
DeLong's struggle has become very public. On Nov. 1, more than 1,300 people attended a roast in his honor. Since then Jeanne Dammen is leading a group to help the DeLong family with rides and errands.
To volunteer to help, contact Dammen at 608-676-4258.
Now that DeLong is getting used to life with the disease, he is becoming more open about what has happened to him since his diagnosis.
Often referred to as “Lou Gehrig's disease,” ALS is a progressive neurodegenerative disease that attacks nerve cells in the brain and spinal cord resulting in muscle weakness and atrophy. Some diagnosed will live two to five years and others may live 10 or more years.
DeLong first noticed something was wrong while he was playing softball in June of 2007. He noticed some weakness and assumed he was out of shape. When DeLong tried to run in August, his legs seemed to have a mind of their own and he began to notice some muscle twitches.
Although he went from doctor to doctor, he still didn't get a conclusive diagnosis. Doctors had to rule out other muscular nerve diseases.
DeLong finally found out in February of 2008 that he had ALS, something he knew little about. Doctors told DeLong that only one in 230,000 people get ALS, although there are no formal registries yet.
Another challenge is that there aren't many treatment options for ALS. Those with the disease can take Rilutek, a drug that holds off the end stages of the ALS. Any medications typically treat the symptoms, not the root of the disease.
Although there may only be 30,000 in the U.S. living with ALS at one time, every 90 minutes someone is either diagnosed with or dies from the disease, according to Lori Banker-Horner, patient services director with The ALS Association, Wisconsin Chapter.
Dealing with the unknown has been a challenge for many diagnosed with ALS. Although DeLong was doing pretty well using a walker and cane this summer, he had to think ahead and look into buying a motorized wheelchair and a special handicapped accessible van.
“Attitude is everything. It's absolutely critical. Some people don't try to adapt. There are people who will fight the illness, but we want people to stay three months ahead with equipment. It takes awhile to get equipment and wheelchair,” said Robin Stanczyk, patient services coordinator with ALS Association Wisconsin Chapter.
DeLong has found many ways to adapt.
When his arms became weaker, for example, DeLong found a solution for using a cell phone. He mounted it to an iPod holder, which is tied around his wrist.
DeLong is glad his wheelchair can move up and put him at eye level with others.
“It puts the person who is handicapped at a comfort level and also puts the people you are talking to at ease,” DeLong said.
DeLong doesn't have ALS in his family, but the majority of ALS cases seem to happen spontaneously. However, DeLong sometimes wonders if he got it after taking cholesterol medication. Although no connection has been proven yet, researchers are looking into the connection between certain medications that may lower peoples' resistance to the disease.
Despite the disease, DeLong said he's working with his abilities as opposed to his disabilities. Other residents attending board meetings will often offer to drive DeLong to meetings.
Because some people are nervous and don't know how to approach him, DeLong said he makes sure to make the first move and engage people in conversation, something he's known for.
DeLong's struggle has become very public. On Nov. 1, more than 1,300 people attended a roast in his honor. Since then Jeanne Dammen is leading a group to help the DeLong family with rides and errands.
To volunteer to help, contact Dammen at 608-676-4258.
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