Learning to cope with ALS -- Ann Hanson of Johnson Lake

JOHNSON LAKE – After nearly a year of tests, Ann Hanson of Johnson Lake was diagnosed Oct. 31, 2008 by her doctor, Pariwat Thaisetthawatkul, a UNMC physician, as having amyotrophic lateral sclerosis (ALS).She and her husband, Howard (J.R.), were told to prepare themselves in the near future for a tracheotomy, ventilator, feeding tube and other medical procedures. “They kept telling us to have a living will, power of attorney and papers drawn up,” said Howard. “In December, it didn’t look like we’d need those things.”Mid-January, however, Ann’s condition took a turn downward and the legal papers had to be implemented.ALS is a form of motor neuron disease that affects the nerve cells in the central nervous system, the ones that control voluntary muscle operation. In the United States, the condition is often referred to as Lou Gehrig’s disease, after the baseball superstar who was diagnosed with the disease in the late 1930s. Today, physicist Stephen Hawking is most likely the most well-known example of a living ALS patient.

Stephen Hawking, born in 1942, was 21 when he was diagnosed with ALS. Ann credits Hawking’s attitude of working around the disease and getting on with the task of daily living with his longevity.

“He’s the champion of tolerating a ventilator,” Ann said.

Although Ann was diagnosed in October of 2008, the symptoms of ALS appeared nearly a year earlier in December 2007.

“At Christmas, I kept dropping things,” Ann explained.

A couple of months later, it was February 2008 and it was 18 degrees outside and she fell in front of her car outside the Paxton Consolidated Schools where she was teaching. Howard helped her up and drove her to Kearney. She was admitted to Good Samaritan Hospital and doctors, several doctors, performed all kinds of tests, but didn’t really come up with anything other than she maybe had some herniated discs in her neck snad back.

It was decided she would need to have the discs in her neck repairted. In March, she had surgry to repair three herniated discs in her neck and was told this procedure would probably help her walk better. If this did not work, then the Hansons should think about back surgery during the summer.

In April, she had taken another fall and was taken to Good Samaritan emergency room. After she was dismissed, she and Howard decided to visit with an orthopedic surgeon while in Kearney. It was decided that she needed to have her right knee scoped in June. Following that knee scope, Ann was sent home to rest.

While at home, Ann’s legs hurt and was again taken to the emergency room at Good Samaritan to have an ultrasound done on her legs. It was discovered that she had blood clots in both legs and spent the next four days in the hospital. This took away any chances for back surgery.

Her family doctor, Dr. Ron Scott, sent Ann to Dr. Jan Weber, a neurologist. After some test, Dr. Weber was not satisfied with what she was seeing and sent Ann to see Dr. “Thai” at the Nebraska Medical Center in Omaha. After several trips to Omaha and several test, including a spinal tap, an EMG, blood samples and a muscle biopsy, she received her final diagnosis in October 2008, but not before Ann had endured the scoping of the knee and neck surgery.

“By then they gave me a walker, wheel chair and other necessary equipment” Ann said. “My knees turned to jell-o. I knew when I was going to fall, but couldn’t control them.”

The disorder causes muscle weakness and atrophy throughout the body. The neurons in the body cease to send messages to muscles. Unable to function, the muscles gradually weaken. The patient may ultimately lose the ability to initiate and control all voluntary movement; generally the muscles for eye movement and bladder control are spared.

“I knew that I had to have medical support to breathe,” Ann said, “have a feed tube and help to be transported.”

“It’s like a circuit board not sending signals anymore,” Howard said.

Although Ann and Howard seem to have their daily life down to a manageable routine, it wasn’t easy getting to that point. After Ann became sick on January 30 and was placed on a ventilator, she was hospitalized for 10 days at Good Samaritan and 41 days at Madonna Rehabilitation Hospital in Lincoln, which is one of three hospitals in Nebraska well-equipped to care for a patient on a ventilator.

“Each patient at Madonna is assigned a team of specialists. They all came in individually and asked Ann what she wanted to do,” said Howard.

“I want to go back home, I told them,” said Ann. “It’s not an unrealistic goal, they said, but it’s a tough goal.”

While at Madonna, Ann regained the use of speech and able to eat soft foods through her mouth. Following the tracheotomy, Ann was not guaranteed she would speak again or be able to eat food. While at Madonna, both of these functions again became a reality.

In fact, several of the specialists told Ann only a handful of people get to leave the hospital once they are on a ventilator. The requirements are numerous, for example, Ann and Howard had to have a generator, a back up ventilator, humidifier, suctioning machine and a plan for around the clock care.

Although she has full range of feeling, she has no use of her legs or hands and must be fed a liquid diet five times a day; 8 a.m., noon, 4 p.m., 8 p.m. and midnight.

Howard spent 41 days with Ann at Madonna Hospital, learning how to take care of her. He had to agree to go through intense training on learning how to be a 24/7 caregiver as well as being comfortable with the ventilator and patient care related to a person with ALS.

Jokingly, Howard would to refer to his training as being at Camp Madonna

“It felt like you were in boot camp,” said Howard. “What impressed them [the staff at Madonna] was her attitude and her willingness to get out of there.”