More MS news articles for June 2001

Help exists for MS patients

Saturday, June 16, 2001
Wendy Harris - Staff writer

When Phyllis Koch-Troncale learned she had multiple sclerosis last year, her first thought wasn't about her health.

Rather, it was the impact the disease would have on her family.

"My first thought was I can't put my husband through this, we'd only been married for over two years," recalled Koch-Troncale, who is 46.

Despite her fears, her husband has been her strongest pillar of support. The disease, so far, has left one side of her body numb from her head to her toes.

"A good day is when I can get out of bed," she said. "A great day is when I can make it to the kitchen table to have coffee."

Multiple sclerosis, which afflicts an estimated 250,000 to 350,000 Americans, attacks the nervous system and causes blurred vision, fatigue, weakness, poor muscle coordination and sometimes paralysis. The Inland Northwest has the second highest incidence of MS in the world.

The recent McGuckin family tragedy in North Idaho has helped focus the region's attention on the sometimes devastating impacts of the disease.

The family was shattered by poverty, isolation and the multiple sclerosis suffered by Michael McGuckin, 61, who died of complications related to MS last month, according to the Bonner County coroner.

Two weeks later, his wife, JoAnn McGuckin, was arrested and accused of child neglect. With their mother in jail, her children wound up in a five-day standoff with law enforcement officers. The children are now in foster care and JoAnn McGuckin is awaiting release from jail, hoping to be reunited with her children.

Koch-Troncale said she has been thinking lately about JoAnn McGuckin. Koch-Troncale knows the toll the disease can take on a family, how depressing and demanding it can be. But she also knows there is plenty of help available for those who reach out -- help the McGuckin family apparently rejected or didn't seek.

"It's been very hard on my family ... and it always makes me feel guilty," Koch-Troncale said about her illness. In February, she had to quit her job and stop driving as her symptoms worsened. She used to work at the Spokane Arena's concession stand.

She and her family found support from the Inland Northwest Chapter of the National Multiple Sclerosis Society. The nonprofit agency offers information and referrals, self-help groups, telephone peer support and a range of other services.

"They have other people with MS who call and check on you to see how you are doing," she said.

She has taken comfort in their support, borrowed equipment such as a shower bench from the agency, and enjoyed the weekly swimming sessions. The MS Society uses the Spokane's Salvation Army pool, where the water temperature is turned down for MS patients. MS patients often despise the heat, which saps their limited energy, and prefer the cooler water.

The local MS Society serves Eastern Washington and North Idaho, where more than 1,850 people with MS and their families live.

Doctors believe there may be a genetic predisposition to MS. The disease typically strikes people of Northern and Western European descent, said Zo Woods, director of the Holy Family Multiple Sclerosis Center in Spokane.

Women are two to three times more likely to get MS than men, and patients generally are diagnosed with MS when they are between the ages of 15 and 50, Woods added.

The Inland Northwest's racial homogeneity has been cited as one possible reason for the high MS rate. Worldwide, only the Shetland and Orkney Islands off of Great Britain have a higher prevalence of the disease, Woods said. Unknown environmental factors may also help trigger the disease.

The Holy Family MS Center offers a full-service MS diagnostic and treatment center. The facility, which opened 21/2 years ago, serves about 2,000 patients, and adds up to 30 new patients a month. In addition to the Inland Northwest, patients come from Oregon, Alaska and Montana.

For those newly diagnosed with MS and their family members, dealing with the emotional upheaval can be just as traumatic as the symptoms, said Gary Dagastine, of Post Falls. His wife, Beth, was diagnosed with MS in 1992.

"You have that lost feeling and you just don't know what is going to happen," said Dagastine, 54, recalling the mix of denial, anger, sadness and resentment he first experienced.

Meanwhile, Beth Dagastine, 55, faced depression, fear and guilt.

"It was extremely depressing and I thought my husband was going to leave me," she said. "I thought I would be flat in bed and disabled."

Depression and divorce are common among MS patients and their families. But the Dagastines armed themselves with information, which led to activism.

The couple now heads Kootenai County's Multiple Sclerosis Association of America support group. Within the last year, they began offering the association's Pathways Program, which helps MS patients remodel their homes to make them handicap accessible.

Project proposals are submitted to the association's national office, which provides money for supplies. Then Beth and Gary Dagastine round up volunteers to do the construction.

The local program, so far, has made renovations to more than a half-dozen homes where they've widened doors, built ramps and remodeled a bathroom.

Beth Dagastine can still walk and drive. She uses a cane on her bad days. Though she's quit her job as a bookkeeper, helping others with MS is now her full-time job.

She and her husband try to reach out to as many MS patients as they can, but they know there are many families who suffer in silence.

"There is help out there," said Gary Dagastine. "But some people just don't want to face it and think they can deal with it on their own."

Unfortunately, many people have misinformation when they find out they have MS, said Sharon Looney, a peer counselor for the local MS Society.

"They envision people in wheelchairs in nursing homes who are totally disabled," said Looney, 56, who was diagnosed with MS nearly 12 years ago. "They are scared to death, don't know much about it and need reassurance and comforting."

The majority of people with MS can go on to lead productive and fulfilling lives, she said. About two-thirds of those with MS will remain able to walk, though many will need to use a cane or other devices.

There are drugs that help slow the progression of the disease, including Avonex, Betaseron and Copaxone -- known as the "ABC" drugs. Last October, the Food and Drug Administration approved the cancer drug mitoxantrone -- also known as Novantrone -- to treat the progressive and crippling form of MS.

Some patients have periods of severe symptoms, which then subside -- sometimes completely -- until the next attack. Those with the progressive form of the disease experience a steady worsening, during which their bodies are unable to recover between flare-ups.

The earlier the diagnosis, the more effective the drugs can be, said Woods, of the Holy Family MS Center.

"The earlier the treatment, the better we can get on top of the damage that is done to the central nervous system," she said. "Some people still aren't in treatment, but we try to get them in, educate them and work with them."