Living With ALS

Dave Farris helps his wife Kathy, who was diagnosed with advanced ALS or amyotrophic lateral sclerosis a year ago, in getting a drink because she is no longer able to care for or feed herself. The couple, who are both graduates of Washington High School, were living in Kimberling City until last year when they moved back to Washington to be nearer to Kathy’s doctors in St. Louis.


Dave and Kathy Farris, Washington, thought things were going to get better at the beginning of the summer after he quit his job and cashed out all of the savings in his 401(k). That is what they had been told they needed to do for Kathy, who has advanced ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig’s disease, to qualify for services with Medicaid.

ALS “is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord,” according to the ALS Association website. “Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to death.

“When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.”

That’s where Kathy, 53, is today. She is confined to a wheelchair, has a feeding tube for eating and can no longer talk clearly. She relies on an “eye gaze” communication device to say what is on her mind.

The device is one of the few bright spots the Farrises have. They received it back in February, after Kathy had already lost the ability to speak.

If they had been able to get it earlier, they could have recorded Kathy’s voice into the device so it would be her voice people hear when she has it speak for her rather than the computer recording.

Kathy has a motorized wheelchair on loan from the Muscular Dystrophy Association, and since the Farrises’ car was repossessed, they have been loaned a wheelchair accessible van from the ALS Foundation.

Kathy requires a lift machine to help her bathe and to get in and out of bed. And Dave doesn’t like to leave her alone ever, for fear that should an emergency arise, Kathy would be unable to call for help.

The Farrises recently received some much-awaited good news in their struggle to get Kathy the care she needs — she has finally been approved for Medicaid.

They had been waiting nine months.

The Diagnosis

Before ALS stripped Kathy of her ability to walk and talk, she worked as a special ed teacher, mostly in St. Louis, but they had moved to Kimberling City, on the other side of the lake from Branson, when the first symptoms of ALS appeared.

The early symptoms of her ALS were the kind of vague problems that could be caused by a number of simple ailments, so originally they didn’t alarm anyone, said Dave.

Kathy suddenly had trouble opening soda bottles, for example, and she was dropping things more than usual, he noted. Initially it seemed like it could be simple arthritis.

Eventually, Kathy began falling frequently, although she often didn’t tell Dave about her falls.

Then on St. Patrick’s Day 2012, Kathy fell in the shower and hit her head hard enough that she needed 16 stitches. After that the falls came more frequently.

“She fell 27 times from March to May,” said Dave.

Later doctors realized she was falling so much because she was experiencing blackouts brought on by problems with her carotid artery.

“When she turned her head, it would block it,” said Dave, noting a pacemaker was put in to correct the situation.

After five months, doctors still couldn’t explain Kathy’s symptoms, but the couple had been in touch with a doctor friend in Jefferson City who urged them to get Kathy to a doctor in St. Louis.

The couple moved back to Franklin County in May 2012 to be nearer to Kathy’s doctors in St. Louis, but she still didn’t have a diagnosis, and Kathy’s health and ability to care for herself was deteriorating fast.

In July 2012, she was able to walk, said Dave, but in September, when she began seeing Dr. Timothy Miller, a neurologist at Washington University and Barnes-Jewish Hospital, she needed a walker to get around. By October, she was in a wheelchair.

Dr. Miller is the one who identified Kathy’s condition. After just two hours with her he told the couple he was 95 percent sure she had ALS, said Dave. After more testing he had worse news for them — she has an aggressive form.

The Runaround Treatment

In May 2012, when the Farrises moved back to Franklin County, they applied for Kathy to receive disability payments through Social Security. They didn’t anticipate any problems. It seemed like it would be a matter of filling out the correct paperwork.

But she was repeatedly denied.

Kathy was finally approved for disability in November, after the couple hired an attorney and after Dave took Kathy in person to the Social Security office so the staff could see for themselves her physical condition.

“The state kept telling us that she could still work,” said Dave. “They said she didn’t have a bad enough problem.”

A nice lady in the Union office walked the Farrises through the steps of applying for Medicare, and that seemed to get the ball rolling in the right direction.

Kathy was approved for Medicare, which enabled her to have a limited number of in-home visits from certain health care workers.

Getting approved for Medicaid, however, was a serious fight.

The couple applied for Medicaid on Dec. 7 and were told it could be up to 120 days before they would receive an answer. Dave called every two weeks to see if a decision had been made.

“They kept saying, ‘It’s in the process,’ ” he recalled.

In January, Dave received a letter telling him to submit bank statements from all of their accounts in the last six years. The letter arrived on a Friday and the deadline was the following Monday.

A social worker was able to help the couple get an extension to collect the information.

Still the process dragged on with no answers. After the 120-day waiting period came and went, Dave called on Legal Services of Eastern Missouri for help. An attorney sent an appeal asking why the Farrises had waited four months with no answer.

“Every time we did something, there was always another excuse why she didn’t qualify,” said Dave.

That’s when questions arose about a $3,400 balance Dave had in a 401(k)account. What was he planning to do with that money?

“Pay for Kathy’s funeral,” he told them.

That didn’t matter. The Farrises were told as long as Dave had more than $2,000 in that account, Kathy would never be approved for Medicaid because it continued to appear on paper that they had more than $2,000.

And the only way for Dave to cash out that 401(k) was to quit his job, so he did May 29. Two weeks later he cashed out the 401(k) and used the funds to pay outstanding medical bills.

Still, no approval.

The Farrises, who were married 28 years in July, were told if they were to get a divorce, then Kathy would qualify for Medicaid. They refused.

“Then they would just put her in a nursing home,” said Dave.

Finally, a Breakthrough

The Farrises reapplied for Medicaid in July 2013, and Dave began calling the multiple phone numbers he had been given to get his answers.

Finally when his frustrations came out on the phone when calling one of these numbers, “a kind woman” on the other end went the extra step to move Kathy’s case forward, and finally, everything fell into place, said Dave.

Originally, he was told it would be two weeks before Kathy could begin receiving services because she needed a prescreening, but when Dave said how long that would be, considering how long the couple had waited already, the worker said she would do what she could.

“All of the sudden (a nurse) called that same day and said she would come by in two days, and she did,” said Dave.

Looking back over the last year and a half, Dave said there was sympathy along the way from a small number of people who nuged Kathy’s case forward, but “probably 70 percent of the people he encountered didn’t care” whether they helped the Farrises or not.

“It was just, ‘Call this number, call this number,’ That kind of stuff,” said Dave.

They only would do the minimum they had to and passed it off to someone else, and the Farrises got stuck in a loop, he believes.

Now that Kathy has been approved for Medicaid, that will not only provide her with daily services, but also help with upcoming medical bills.

Medicaid will pay for 80 percent and Medicare will pay the other 20 percent, said Dave. However, that won’t touch the $15,000 in medical bills that Kathy has already accumulated.

“This is a very expensive disease,” Dave remarked.

Initially, Kathy has been approved for five hours of care, five days a week, which will give Dave some respite time after caring for his wife nearly 24-7 for more than a year.

He has had help from their older daughter, Katie, 22, who took a year off of college to help care for her mother.

The Farrises have another daughter, Emily, 19, who is a student at the College of the Ozarks.

The family says they have gotten by until now “on the grace of God, lots of prayers and lots of help from friends.”

They are members of Immanuel Lutheran Church in Washington, and they are both graduates of Washington High School.

Many people around the community know of Kathy’s family, the O’Dells. Her father was Rogers “Bud” O’Dell, and the family owns O’Dell Brothers moving company out of St. Clair.

Both Immanuel Lutheran Church and the Farrises’ old church back in Kimberling City have held fund-raisers for them. Kathy’s family has done the same.

Dave said Kathy’s brothers are planning a fund-raiser for her at O’Dell’s Irish Pub in Eureka, although the date and time hasn’t been set. Watch The Missourian for details.

Now that Kathy will have someone coming in to care for her five days a week, Dave plans to get back to work (with her brothers’ moving business) as much as the schedule allows. However, he will have to watch any paychecks carefully. For Kathy to keep Medicaid, he cannot earn more than $1,600 a month.

Enjoys Visits From Friends, Family

The one way family, friends and anyone who knows and cares about Kathy can help, said Dave, is to stop by their house for visits and to see her. It really lift her spirits.

“She needs to have visitors, but people are afraid to stop by,” he remarked.

“We have a few friends who say, ‘Call us when she can see us,’ but really, just stop by anytime, even if it’s just for five minutes . . . It makes her day.”