Deaths hit family same day, year apart

By MOLLY HOTTLE • REGISTER STAFF WRITER • January 5, 2008

When Michael Myers died on Dec. 3, 2006, of a fatal disease, his family was devastated. But when his younger brother, Mark, died of the same disease on the same day, a year later, calling it coincidence seemed like an understatement.

Michael Myers was living in Johnston in 1996 when he began feeling weakness in his muscles. Doctors told him it was probably nerve damage due to a worn disk in his neck. When disk-replacement surgery made no difference in his condition, he sought other opinions.

Within a few months, his brother experienced medical problems. When Mark Myers of Waukee began to slur while speaking, he started questioning his health. In 1997, when the brothers' symptoms worsened, they went to the Mayo Clinic in Rochester, Minn.

Doctors at the clinic told them that they were suffering from amyotrophic lateral sclerosis (ALS), a degenerative and fatal neurological disease also known as "Lou Gehrig's disease."

Michael Myers' son, Jamie, was working at Regency Homes, the business his father had helped to start from the ground up, when his father and uncle received their diagnoses.

"(Mark) could walk, but he lost his ability to speak and my father continued to lose his ability to walk first," Jamie Myers said recently. "ALS is a terrible disease. It traps you inside your body and you can't imagine the amount of stress and frustration it causes when trying to communicate with someone without your voice, without your hands, without any real way to communicate."

The only difference between the brothers' conditions was the nature in which they began. Michael Myers had limb-onset ALS, which causes weakness in the arms and legs first. Mark Myers had bulbar ALS, which first targets the respiratory system. Both conditions eventually paralyze the entire body.

For 10 years, Michael and Mark Myers were given several different treatments, including creatine, a supplement generally used by bodybuilders to build muscle mass, and other drugs in an attempt to slow the progression of the disease.

The life expectancy of an ALS patient is two to five years from the time of diagnosis.

Michael and Mark Myers fit into the 10 percent of cases living longer than the expected five years.

Michael Myers had a stomach tube put into his body when he was unable to eat solid food. Mark Myers had to use a special tool to spell out the words he could no longer utter.

"Those were the situations that were more real than when (Michael) just couldn't walk. Lots of people in this life can't walk, but when you can't walk and you can't talk and you can't eat, all of your freedoms are being robbed from you little by little," said Jamie Myers, between tears.

"I get emotional about it. It was tough to watch them go through that because you just want to take it away."

Michael Myers was 57 when he died at his home of congestive heart failure, caused by ALS.

Mark Myers was 56 when he died of pneumonia in a Johnston hospice.

"We feel very lucky and very blessed for our 10 years with them," Jamie Myers said.

About 5 percent to 10 percent of ALS cases are deemed hereditary, caused by the presence of a gene called SOD-1. However, genetic test results showed that neither of the Myers brothers had the gene.

The link between the two cases remains known.

And it's not likely that Jamie Myers or other Myers family members possess the SOD-1 gene, thus giving no clear sign if they have the disease unless they were to begin feeling symptoms.

"(Doctors) don't know how to even narrow the gene pool to isolate those genes that trigger it," Jamie Myers said. "It's just too coincidental, but we don't know."

There is also some indication that Michael and Mark Myers' mother, Rose, may have died of ALS in 1972.

Medical records lacking details have made it hard to determine any definite ruling, but according to Jamie Myers, doctors who have seen Rose Myers' medical history say they can't rule ALS out as a possible cause of her death.

"I've certainly asked the questions about myself and my family, my brother and his family," Jamie Myers said. "We've asked those questions, but there's no way of knowing."

Jason Lee, executive director for the ALS Association's (ALSA) Iowa Chapter, is familiar with the Myers family and their struggle with the disease.

"There are a lot of bad cases, but to be diagnosed on the same day and then live with it so long, that is an anomaly in itself," Lee said.

Technological development has helped advance ALS research significantly, according to Lee. Treatments are available to slow the degenerative nature of the disease and also to improve the quality of life.

Rilutek is the first treatment that has been scientifically shown to lengthen the life expectancy of ALS patients. Tools involving eye-response technology allow patients to communicate what they want to say with their eyes.

"We're closer than we ever have been (to a cure), but we've still got a long way to go," Lee said.

For now, Jamie Myers is focusing his efforts on supporting ALS research.

As the vice president of Regency Homes, he has helped to coordinate and sponsor the Regency Muscular Dystrophy Association Golf Classic, the largest MDA golf event in the nation, every June in Des Moines.

For the past seven years, the three-day event has drawn an estimated 200 participants to play golf and raise money for the Muscular Dystrophy Association and other charities.

"It has helped us get the awareness out into the community and has helped us raise dollars at the same time," Jamie Myers said.

"Michael's Landing," Regency's largest planned community located in West Des Moines, was named in Michael Myers' honor, as were the company's design studio and West Des Moines office building.

"My father was unable to speak verbally, but he never stopped truly working all of the way until his passing. Even when he couldn't communicate by voice or even typing, he would spell out words to communicate the ideas he had for the business," Jamie Myers said.

"Regency is very proud of (Michael's Landing) and we thought it would be a great honor to name it after him."

Reporter Molly Hottle can be reached at (515) 284-8065 or mhottle@dmreg.com

The groundbreaking ceremony for the Michael R. Myers Hospital in West Des Moines took place in November. It is expected to be completed in the spring of 2010.

Mark Myers, right, then an ALS patient, participates in a September 2006 research benefit walk, assisted by his caregiver, Mike Nichols. They were part of the ALS team, “Miles for Mark.” Myers, who was diagnosed with bulbar ALS in 1997, died of pneumonia at age 56 last month.

Gift pledged to hospital

In January 2003, Michael Myers and his family pledged a $15 million gift to build a hospital in West Des Moines.
It was the second-largest donation to be given to the Iowa Health Foundation.
The $118.5 million Michael R. Myers Hospital is expected to be completed in the spring of 2010 and will be located on 60th Street between University Avenue and Westown Parkway in West Des Moines.
The Myers family also aids the Muscular Dystrophy Association and the Robert Packard Center for ALS Research at Johns Hopkins University in Maryland.
West Des Moines-based Regency Homes builds about 1,000 homes across Iowa annually and also specializes in commercial development.

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