By Tina Snell, Staff Writer
Ivan Weber, born and raised in Pierz, has been told most of his life that he has cerebral palsy. He was diagnosed in 1968, at age 3 after his parents, Leo and Rosetta Weber, took him to the doctor.
A benefit for Weber is planned for Saturday, July 26, at the Genola horseshoe arena. The event, which runs from 2 p.m. – 7 p.m., will raise money to purchase a specialized van for Weber.
Cerebral palsy is a permanent and non-progressive disorder which causes physical disabilities. It is caused by damage to the motor control centers of the brain and may occur during pregnancy, childbirth or after birth up to the age of three. A small number of cases may be caused by genetics.
There is no cure.
Today, Weber’s symptoms are progressing, unusual for cerebral palsy. He finds that winters are especially hard on his body and sometimes he is unable to move his legs at all. While the heat and humidity of Minnesota summers is a little better, it’s still not good.
Up until about 10 years ago, Weber was working, playing the drums in a variety of bands and living a full life. He married Karen Moeller from the Foley area in 2002 and at that time didn’t even use a cane to get around.
“For the past 10 years, my symptoms have gotten worse,” said Weber. “The doctors, and I, felt that something else was going on.”
Weber said he is now able to walk short distances in his home without a walker, but any more than that, he needs a wheelchair.
“Just putting my leg brace on every day is a huge effort due to my stiff muscles,” he said.
So Weber and his wife, Karen, traveled to the Mayo Clinic in Rochester in June. They saw four different doctors: a gastroenterologist, a neurologist and two physical treatment specialists. Weber’s new diagnosis is spastic paraplegic.
Usually inherited, this disease shows symptoms of progressive stiffness and contraction of the lower limbs due to nerve damage or dysfunction.
It is not a form of cerebral palsy.
“The doctors at the Mayo Clinic wanted to call what I have ‘hereditary spastic paraplegia’ but since I have no relatives with the same disease, they dropped the ‘hereditary,’” he said.
One reason for the change in the diagnosis is that Weber is much more comprehensive and aware than most cerebral palsy patients.
What may be in the future for Weber is having a baclofen pump installed in his chest to relieve the stiffness in his muscles.
Weber said he was taking the same drug in pill form for a time, but they didn’t seem to work. The doctors told him the fluid form should work better.
He is hoping for a trial this summer.
“It won’t return me to my former self,” said Weber. “But, it will delay the progression of the disease.”
Weber said he is often complimented on how he handles his condition.
“I cannot do a thing about it. I’m a happy person and try to stay positive,” he said. “Why be miserable?”
Weber said he has great friends and family and has a lot to be grateful for.
“I may have daily challenges, but I am lucky,” he said.
Music has always been a huge part of Weber’s life, playing the drums with several bands in the St. Cloud area.
“There were 10 kids in my family and we all played music,” he said. “In fact, when we get together now, instruments will come out and we all play. It keeps a person happy.”
The benefit for Weber hopes to raise enough money so he can purchase a specialized van for himself.
“I need a van where I can drive my wheelchair right up to the steering column and the hand controls. Something with a ramp or lift,” he said. “It’s been difficult putting my wheelchair into the old van, then walking around the vehicle to get into the driver’s seat.”
The benefit will feature Ripsaw at 4 p.m. in a reunion performance, a band that Weber played drums with. In fact, he will be joining the group that evening. Also playing will be the Dahmen Brothers beginning at 2 p.m.
A silent auction, picnic meal (free-will offering) and a split the pot drawing will also take place. Silent auction items may be dropped off at the Pierz High School, door 2. Ripsaw T-shirts may be purchased.
Camping will be available on site. Call or text Dean Dahmen at (320) 232-5120 for reservations or to make donations to the silent auction.
Monetary donations may be made to Farmers and Merchants State Bank, c/o Ivan Weber Benefit, P.O. Box 308, Pierz, MN 56364.
For more information about the benefit, contact Dahmen at (320) 232-5120.