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Tuesday, July 28, 2015

Shooting to Stop Huntington's

Tuesday, March 27, 2007

Schaller man lives with diagnosis

Huntington's Disease is a devastating illness that robs its victims of some of their most precious resources - the ability to walk, talk, eat and through progression, even the ability to think.

Huntington's Disease is an inherited disorder that affects the brain, and currently there is no cure for the disease.

Steve Reimers, Schaller, a successful businessman and caring husband and father, was diagnosed with Huntington's in 2000. It is difficult for his family and anyone who has been acquainted with him, to see his condition slowly worsen.

Huntington's affects all people differently. The first thing that alerted Steve's family that there was something wrong, were his constant outbursts, obsessions and poor decisions, all actions that were not like him at all. He was accused of being intoxicated as people saw his swayed walk and heard slurred speech. He finally reached out for help when he told his family, "My brain feels like mush."

A visit to the family doctor led him to a Sioux City doctor and eventually Iowa City. A myriad of tests were conducted but it was finally diagnosed as Huntington's when doctors noticed his staggering walk, a typical symptom.

The family was confused - there was no history of the illness. They started doing their research and realized that Steve's mother and his sister, both diagnosed as schizophrenics, had been misdiagnosed. They were also both victims and succumbed to Huntington's Disease, they believe now.

Steve's sister lived in another state and many visits were made to visit her as the disease progressed. It saddened him to see her.

A person who has one parent with Huntington's disease has a 50 percent chance of inheriting the faulty gene. This risk is 50 percent for each child and is not altered by gender or whether brothers and sisters are affected. People usually have symptoms for up to 10 years before they find out they have the disease and most are diagnosed between the ages of 30 and 50, although this can happen much earlier or later in life.

For some time, there was denial; it took Steve some time to share with friends and the community what was really going on.

"He felt like it was 'his' disease and he didn't want anyone to know," said daughter Missy Kestel.

But once the truth came out, it put an end to a lot of rumors going on about Steve.

"When something like this happens, you expect the world to stop," Missy commented. "but it doesn't so you have to figure out a way to change it. There's nothing we can do to make him better so as a family we spend as much time as we can together and make the most of every day. We've been humiliated and embarrassed" by some of the actions so unlike the Steve they all once knew, "but we'll never abandon each other."

Now that people know the truth, they all want to help. Medication has helped but will not bring a cure.

Steve no longer works and doesn't ask about the businesses he created and helped make successful. He is a third-generation owner of the Schaller Telephone Company. He was a technology leader and also brought Prism Telemarketing to the community. He was once a gifted woodworker, enjoyed fishing, boating and traveling and was never afraid of risk. He still drives; but when doctors tell him enough, he will need to quit. He does make short trips downtown and to Storm Lake and sticks with a daily routine which includes playing cribbage and cards with friends. Doctors have said it is good for him to stay busy and use his mind as much as he can.

Steve and wife Joann travel to Iowa City every six months to go through a battery of tests to see how the disease is progressing. Some changes have been seen since the last visit, Missy and Joann pointed out.

His speech is starting to decline. His steps are a little more unsteady. He is expressionless. His smile is gone. But despite the losses, the family has come to read him well. They know he is thankful for all that anyone does for him.

It is stressful for the family but they carry on. The family is extremely close and that helps tremendously.

"We have cried buckets of tears," Missy said.

Joann has found a great deal of comfort and support by talking online with other caregivers of Huntington's Disease victims.

Making people aware of the disease has become almost an obsession with his family - they want everyone to know what Huntington's Disease is, what it can do to a victim and his or her family and how people can help raise funds to come up with a cure.

They take part in the annual Hoop-a-Thon and collect old cell phones and used ink cartridges (of all kinds) that are sent in to Huntington's Disease Society of America who receives funds for the items. Anyone wishing to help raise funds for HDSA may donate these items at the Schaller Telephone Company.



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