Posted: 9/28/06

Milaca couple faces Lou Gehrig’s with grace and humor
by Dawn Slade
Mille Lacs County Times

In sickness and in health. Those words are often spoken at wedding ceremonies, but for Cathy and Dene Byers of Milaca, those words are especially poignant.

Cathy, a nurse at Fairview Clinic in Milaca, was diagnosed last January with ALS (also known as Lou Gehrig’s Disease).

ALS stands for Amyotrophic Lateral Sclerosis and is a motor neuron disease that typically attacks both the upper and lower motor neurons and causes degeneration throughout the brain and spinal cord.

When the motor neurons die, the ability of the brain to start and control muscle movement dies with them.

Unfortunately, the disease is typically fatal within five years of diagnosis.

There is no known cause, treatment or cure.

Cathy’s first symptoms came to light in the summer of 2005. An avid runner, Cathy suddenly didn’t have the stamina she normally experienced.

“My right leg would feel heavy at times,” she said.

By the end of that summer her fingers on her left hand weren’t cooperating and later began curling with feelings similar to arthritis.

“I ignored it for quite a while,” Cathy admitted. “I tend to do that.”

Dene had noticed his wife’s stamina decrease and problems with her hands.

“It was pretty obvious,” he said.

An LPN for Dr. Chawla, Cathy tends to verbalize with her hands and when a fellow nurse noticed something was amiss, Cathy could no longer ignore it.

Dr. Chawla ordered an EMG (electromyography) test which detects the electrical potential generated by muscle cells when the cells contract and when the cells are at rest.

“I flunked it!” Cathy said with a laugh.

An MRI of the neck area didn’t reflect any abnormalities and Cathy said, “Everyone was kind of puzzled by this time.”

ALS is an uncommon disease with roughly 5,000 new cases in the United States each year, which is one of the reasons it was so difficult to detect.

Another reason is the symptoms. Often early symptoms include speech, swallowing and/or walking difficulties, muscle weakness, twitching or cramps.

The symptoms can mimic other disorders and ALS patients typically have to “progress” before signs are conclusive enough for a physician to reach a definite diagnosis.

Dr. Masood, a neurologist who visits Fairview in Princeton, did a complete exam of Cathy and had a full body EMG ordered.

Although the doctor ruled out multiple sclerosis, Cathy knew it was something just as bad, if not worse.

“All along I had a feeling that this was not a good thing,” she said.

By the end of January of this year, she had been diagnosed with ALS and was sent to the U of M to work with specialists.

Neither Cathy nor Dene knew much about ALS.

“I just knew it was something I didn’t want,” Cathy said.

The couple admit that learning of the disease was numbing.

Dene said of Dr. Masood, “He was so kind, so gentle. He couldn’t have done a better job telling you, you had ALS.”

When Dr. Chawla called her the next day and asked how she was doing, Cathy replied, “Good. Really good. Oh yeah, I guess I’m not.”

It took a little time for it to sink in.

“There’s just no hope for it,” Cathy said. “No better understanding of it than 40 years ago.”

Love and support

There’s no doubt that an enormous amount of love is shared between Cathy and Dene.

It’s evident in the way they look at each other, they way he gently assists her with daily tasks that were once taken for granted. It’s evident in the way they communicate with each other.

It’s that love and support that gives them the ability to laugh and look at all the blessings they have rather than the problems they face.

“Dene just never gets impatient or short,” Cathy said.

“But, I told him once if he didn’t smile and be nice he wasn’t going to get the ‘Caretaker of the Year’ award,” she teased.

Having taken care of so many people as a nurse, mother and friend over the years, there’s much help being bestowed upon the couple now.

Their three children, Jason, Sarah and Karsten, take turns spending weekends at their childhood home helping with laundry, cooking, cleaning and yard work.

“The kids have been unbelievable,” Cathy said.

They often sleep in the same bed with Cathy to give Dene some much needed rest.

The reason?

Cathy can no longer turn over on her own, breathing is difficult and she needs assistance up to three times each hour.

“If we’re lucky, every two hours,” Dene said.

The past few days have been better since the use of a BiPAP machine which helps her breath by getting rid of the carbon dioxide.

“I thought it would be harder to give up the walking,” Cathy said. “I just block it out. I’m good at blocking the unpleasantness.”

There is only one medication approved by the FDA for ALS, called Riluzole. For Cathy, the medication doesn’t seem to be helping much.

What is helping is the outpouring of love from friends, relatives and co-workers.

Now confined to a wheelchair, Cathy tries to go in to work twice a week and she jokes, “They all kind of swerve around me.

“I’m absolutely amazed at people’s responses. I walk in and feel like all these arms are around me, loving me.”

Challenges

Since the diagnosis, the Byers have had to make some major changes at their home.

Rooms had to be opened up more, special chairs were purchased, and Cathy had to get used to a cane, then a walker and finally a wheelchair. A ramp to their home was eventually installed.

The biggest challenge for Dene is how time consuming it all is.

Going from two spouses sharing the work load to one, along with care giving, has been a challenge.

“There’s no break, unless someone comes to stay with her,” Dene said in his quiet manner. “She really can’t be left alone.”

Fortunately, he was able to retire from teaching at Milaca High School this past school year where he was the ag instructor and FFA supervisor.

Another curve ball is the perpetual change.

“I think what surprised us most is we’re always dealing with something new,” Dene said.

“You get used to one stage and you’re already moving onto the next,” Cathy said.

“It’s been fast,” she said of the steady progression. “It seems mine is moving a lot faster than necessary. We’re always playing catchup.”

Although the couple admits, all the major projects have helped them to focus on those things they planned to do “someday” rather than focus on the illness.

The most difficult challenge for Cathy is accepting all the care and support.

“It’s my personality,” Cathy said. “I want to make people feel better, so I don’t want to be the cause of all the heart ache. And I am.”

Accepting the fact that friends wanted to do a fund raiser for her was difficult.

It took her mother’s words of wisdom to help Cathy realize that it’s an avenue for people to help - and people need that.

But, Cathy realizes there are others who are worse off than she is. She and Dene see some of those people at the ALS support groups they attend.

Young mothers and fathers who have small children, people who can no longer eat solid foods, etc.

“We’ve been very blessed,” Cathy said.

“We’re just kind of used to it now, all the people helping,” Dene commented.

The support groups are beneficial for both Cathy and Dene as they can see where Cathy is headed and they can visit with others who are in a similar situation - receiving advice and offering their own.

“I think it’s been helpful for me preparing,” Cathy said of the group sessions. “It makes it easier in a way.”

“I try hard not to think about what was...or I wish...,” she added. “I think I’ve been pretty successful.”

Dene said, “She’s been very good at it. It makes it easier for the rest of us.”

And that’s just how Cathy is. She likes to make things easier for everyone else, even as she faces such tremendous challenges.


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