ALS Motivation for Links to 'Get Things Done'

Don Links says he isn't afraid of things he can't control. He doesn't like to worry about what he can't change.

Links describes himself as pragmatic. He tries to look at things from a logical standpoint. Sometimes, though, not everything makes sense, especially something you can't control.

What Links hasn't been able to stop for the past year is the progression of amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig's disease. It is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. Life expectancy is variable, with the average between two to five years, but with many living for five or more. More than half live more than three years after diagnosis.

For those who attend Madison Borough Council meetings, it's the disease that has noticeably caused the 65-year-old councilman to lose weight and has affected his speech.

He describes his particular experience as "top-down," meaning it has affected the top of his body first. Though it has affected the manner in which he speaks, it has not affected his ability to walk or drive a car. Most importantly to Links, is that it will never affect his brain.

"If I look back a year ago today when I found out that I had ALS, has it progressed? Certainly," Links said. "Has it progressed to the point where I think I’m going to have a problem being able to function every day? Not at all."

It's the reason why he has made the decision . It's a decision that those close to him have fully embraced.

"My wife supported me right away," Links said. "She said, 'Hey look, physically can you do it?' I said yeah. We knew mentally I’m not ever going to be affected. So she said, 'why not?' My kids felt the same way."

His condition is not something he has kept from those in town. It's not a secret to anyone who has asked, and hasn't been since he was able to talk to his family after he found out last April.

But it is something that he hadn't spoken about in a public setting.

"I just felt that I didn’t want to publicly discuss it," he said. "It didn’t lessen my ability to do the job the way I had done it previously. If, however, it had, I would have resigned."

However, when the decision was made to run for a second three-year term, Links wanted to make sure those in the Rose City knew all of the information.

"Why I’m discussing it now is, if you are going to vote for me, you have a right to know," he said. "If I never ran, I wouldn't have said anything. I would never have brought it up. By bringing it up, it makes people understand I’m not trying to hide it.

"I’m willing to talk about it. And quite frankly, there are probably other people out there that have different disabilities and in my own very small way, I’m trying to show people that you can have a disability and still live a normal life. And why not?"

Links first had an idea his health might be at risk when he had a physical in October of 2010. Links said before that he had noticed at times he slurred words or wasn't able to pronounce those that he knew he could and didn't know why. At the physical, the doctor noticed he had lost some weight. He also noticed another symptom and suggested Links go to a neurologist.

"I hated doctors, so I said, 'I'll go after the first of the year," he said.

In February 2011, he went to the recommended neurologist. He went through a series of visits and tests. Links said he had a feeling something was wrong, but the doctor at the time said it was too early to tell.

Last April 15, links went to an appointment where he was put through another test. Though he was scheduled to come back for the results with his wife the following Monday, Links asked the doctor who gave the test to tell him what was wrong. He was told it was ALS.

"In a sense, I was happy I didn't have to go through the weekend without knowing," he said.

Since then, he went back to the East Orange VA Hospital two months ago for another check, which confirmed the diagnosis.

Links, who is a United States Air Force veteran, noted the statistic that those who serve in the military are twice as likely to become afflicted with ALS than those who have not served.

Links stressed that he does not want people to feel sorry for him.

He can't help the development of the disease. What he can help is what he spends his time on. 

"I’m lucky," Links said. "Why? Because I know there is a time frame and that time frame I can use to get things done. Most of you have no idea what your time frame is. So, I may not know my exact time frame, but I do know that it’s a narrow time frame. Could be three, could be five, could be 10 (years). I don’t know, but I know it exists."

For Links, that includes his current term. He says shared services, which the borough has increased in its court and health department, is something he wants to continue to help develop. He hopes a successful campaign will allow him to continue in that role after this term.

Links also wants to use his time in his professional life. He continues to work at Logical Design Solutions in Florham Park, where he helps run the business side for the software solutions company.

Though he can't control how much time he'll have to do it, there is the most important part of Links' life that he wants to focus his time on.

"I enjoy my children," he said. "I enjoy my family."