Sen. Gary Kubly diagnosed with ALS; remains focused on legislative duties
Trying to solve the state's massive budget deficit, and meeting the needs of his constituents are the challenges that remain front and center in the mind of State Sen. Gary Kubly, DFL-Granite Falls. He's not going to let a recent diagnosis of amyotrophic lateral sclerosis keep him from doing his job. "I can't just sit around here feeling sorry for myself,'' said Kubly, 67.
Known also as Lou Gehrig's disease, ALS is a neurological disease that causes muscles to weaken and eventually leads to paralysis and death.
Kubly was diagnosed Dec. 9. He believes the disease was caught early, he said. The progression can be fatal in as little as two to three years after diagnosis, according to the Mayo Clinic.
Kubly said he knows of people who have managed the disease for 10 or more years, and even one case of a person who survived for 21 years after diagnosis. He said the progression in his case seems slow. A Lutheran minister, Kubly said he also believes very much in the power of prayer.
The disease may progressively rob him of his muscle strength, but it does not fatigue him, he said. Nor has it taken anything from his intellect, sense of humor or determination.
He jokingly refers to the walking cane he uses now as "Citizen Cane,'' and he keeps a sense of humor about his own trials with the disease.
Its effects were showing themselves as tired legs as he campaigned in his large, sprawling district in western Minnesota last summer. "People look at you kind of funny if you sit on the curb,'' he said, laughing.
Kubly has served in the Legislature since being elected to the House in 1996. He served three terms in the House and is now beginning his third term in the Senate. He said he may not have run again had he been diagnosed before the election, but now is glad that he wasn't. He feels confident and more than capable of doing his job. He believes his experience and the growing pastoral role that he plays in the Legislature are needed now more than ever.
He uses an electric cart to make the trips in the tunnel connecting his office in the Senate Office Building to the Capitol.
His muscles tire and will bother him if he stands for too long, so his other accommodation to the disease is to find a chair and seat himself wherever he goes.
He said he has no trouble driving a car.
The first symptoms of the disease showed themselves at the end of the last session, when he began to feel a weakness in his left leg, he said. He had no idea what was going on. He wasn't alarmed even though there came a point when he felt a difference in him that he said told him something wasn't the same.
Always physically active and health conscious, Kubly only decided to visit his local doctor last summer when the campaigning made it impossible to ignore the tired muscles. It led to a whole series of tests and trips to specialists in Willmar and at the University of Minnesota.
There are five different neurological diseases that have very similar symptoms as ALS. Four of the five have definitive tests. ALS does not. The process of elimination came to its conclusion when a somber-faced physician delivered the news just a few weeks before Christmas, he said.
There were plenty of tears as Gary and his wife, Pat, welcomed their three grown children home for the holiday.
Kubly said the best advice came from his wife of more than three decades: "Let's not look at what you can't do. Let's see what you can do,'' he said Pat told him. They have taken it from there.
Kubly said ALS remains a poorly understood disease. In 5 to 10 percent of cases there may be a genetic cause, but in 90 percent of cases or more, doctors have no way to know what causes it.
One thing is known: Those who have served in the military have a higher rate of ALS. Kubly served in the U.S. Air Force during 1966-68 and was involved in classified research at the School of Aerospace Medicine in Texas. His illness is considered service-connected, and that's the one blessing in all of this, he said. It won't bankrupt the family as he is eligible for veterans medical care.
There are no miracle drugs to halt the disease. For the most part, treating the disease is all about pacing yourself so as not to tire your muscles, he said.
And, he's convinced that prayer, a positive attitude and a sense of purpose all matter. Kubly has counseled many people through his role in the ministry and knows the last thing to fall into is what he calls the "pity pot.''
"People ask: Why me? I really haven't asked that question,'' he said. He said he's made peace with what's happened and is concerned now only with moving on and dealing with the challenges before the Legislature.