Capitol Hill was calling former ISU men’s basketball coach Johnny Orr.

On March 23, Orr and his wife Romie testified in front of the Senate Appropriations Subcommittee on labor, health and human services and related agencies about Alzheimer’s disease.

For the Orrs, this cause holds a special place in their hearts — Romie was diagnosed with Alzheimer’s 18 months ago at the age of 73.

“We take a physical every October, and my daughters noticed [their mom] wasn’t remembering some things, so when we took the physical they gave her a memory test,” Johnny said.

“The doctor did and they saw signs — everything was fine with her but her memory, and she has dementia.”

According to the Alzheimer’s Association Web site, www.alz.org, Alzheimer’s is a disease of the brain that impairs memory and ability to reason, with the brain gradually losing brain cells.

Dementia is the loss of thinking, remembering and reasoning. There are multiple symptoms of dementia, including a gradual loss of memory, problems with reasoning or judgment, disorientation, difficulty in learning, the loss of language skills and a decline in the ability to perform routine tasks.

There is no cure for Alzheimer’s, and patients live an average of eight years after being diagnosed.

In the final stages of the disease, memory loss continues to decline, and personality changes may become apparent. At this stage, the individual needs continual supervision.

After learning this information, the Orrs saw a doctor who specialized in Alzheimer’s and dementia.

“[The doctor] examined [Romie] and gave her a bunch of tests,” Johnny said. “[The doctor] put her on medicine, and it’s been 18 months and everything is pretty normal with us still.”

There is one thing that has changed for the couple. In order to protect themselves and others, Romie has decided not to drive anymore.

“We are very open about the Alzheimer’s,” Romie said. “I thought if anybody picks up something and realizes — because everybody knows us — they could pick a fight with me in a car. I thought, ‘That’s not going to work, because then they’d sue us.’ So we just decided I wouldn’t be driving.”

There are 4.5 million Americans living with Alzheimer’s disease today. Some research experts say the number will triple by 2050 unless a cure is found, according to www.alz.org/greateriowa/stats.

The Orrs have been very public with their battle against Alzheimer’s, so testifying in front of the Senate was just the next step.

“We went to Washington D.C., and we appeared before the Senate appropriations committee,” Johnny said.

“We explained our situation along with another couple and a couple of doctors and asked them for $40 million more of research money for Alzheimer’s.”

During the 2003 fiscal year, the federal government spent an estimated $640 million for research on Alzheimer’s disease.

It was the first time the Orrs had done something like this and said it was well worth the experience.

“It was awesome,” Johnny said. “You go in there before the committee, just like you see on television, and you sit down at a table with a microphone in front and give your speech. They give you just so much time, and then they come back and ask you questions, and you answer the questions. The thing that’s very different from Senate hearings is that everyone’s very positive.”

The Orrs and the other couple were hand-picked to tell their stories, and Johnny’s not sure if they’ll have the opportunity again.

“They only asked two people in the whole United States, so I doubt if they ask us again,” Johnny said. “The other couple was from Cleveland; they were very nice people. He told his story about how he discovered [Alzheimer’s], and you would never know that he or my wife both had it.”

The Orrs said they won’t be able to gauge the affect their appearance had on Capitol Hill.

“There is no real outcome,” Romie said. “It’s just a matter of making our statement and trying to influence the other people who are going to be discussing it and deciding in the future.”

Johnny has been active as the chairman of an Alzheimer’s walk in Dubuque, which has raised more than $80,000 in each of its first two years.

“The first year [I was chairman], I did not know my wife had any Alzheimer’s symptoms,” Johnny said. “Last year, when we went up there, we knew it, and it was much more meaningful to me.”

Next year, the Orrs will be co-chairpersons for the September walk in Dubuque and are planning to create a Des Moines Alzheimer’s walk.

Johnny, 76, and Romie, now 75, are still living very active lives. The couple enjoys golfing, and Romie likes to rug hook. Romie said her Alzheimer’s symptoms are under control thanks to medication.

“I don’t ever go without taking my medication,” Romie said.

Johnny retired from coaching in April of 1994 as Iowa State’s winningest coach. He had 218 wins during his 14 years with the Cyclones and took Iowa State to six NCAA tournaments.

During the winter, the Orrs live in Estero, Fla., but return to their home in West Des Moines at the end of April. Johnny and Romie said they followed the success of the Cyclones this season and even went to San Antonio for the Final Four.

“We didn’t go to the game, but we saw a lot of friends,” Romie said. “We’ve been [to the Final Four] every year for 49 years.”

The Orrs want others to understand that Alzheimer’s isn’t the end; it’s just a continuation of what life can be.

“What my wife didn’t want people to do if they found out their mother or brother or whoever had Alzheimer’s [was] to think it was the end of the world,” Johnny said.

“She wanted to be able to tell them that and tell them things are pretty normal. Go right away if you notice anything. Go to the doctor and get a diagnosis, get medication and do everything he thinks is necessary.”