She's beaten the odds ... but not the disease. Dr. Faye Magneson has been battling amyotrophic lateral sclerosis for almost nine years. Most patients live only two to five years with ALS.
Magneson was an internal medicine doctor and director of curriculum at Indiana University School of Medicine in South Bend when she found out the twitches and cramps in her legs weren’t from playing too much tennis.
She was about to turn 50 when she learned she had the diagnosis she feared most ... ALS, also called Lou Gehrig’s disease.
She lost her voice in 2006 and was in a wheelchair a year later. These days little movement is left.
In her book, “An Art Journey,” featuring pastels she painted for five years after taking up the hobby in 2006, Magneson credits many, but particularly her husband, with keeping her going.
“The care I’ve received from physicians, caregivers, but particularly, my husband, has been key,” she explained for a recent e-mail interview with The Tribune.
“It is a brutal disease, and the care is brutal on the spouse left taking care of the person with ALS.
“I have had some close calls with death, but the knowledge my husband has and quick action has given me more time.”
‘An amazing woman’
Dr. Tom Seiffert, her husband of nearly 33 years, says he could not imagine doing it for any other person.
“She’s an amazing woman,” he said. “She’s the best thing that ever happened to me.”
And she’s got a unique inner core.
“She’s a tough lady,” Seiffert said. “She is. And her friends and her interacting and taking care of people is really big for her.”
Those people are key for her, Magneson said.
“Having a strong support system with devoted friends and family keeps me positive and forces me to keep going,” she wrote. “My prior patients continue to be a part of my life, which offers so much.”
None of that support, including daily phone calls from the couple’s two daughters out east, is an accident, Seiffert said.
“It’s been great. The community’s amazing,” he said.
Magneson was not your typical physician, he said. The woman who struggles for even the smallest movement now always went the extra mile for her patients.
“Faye did a lot of things that a lot of physicians don’t feel that they have time for,” Seiffert said.
“She would go to the nursing homes, she would go to the funeral parlors when the patients would die and visit with the family.”
These days, Seiffert is still a full-time physician with Radiology Inc. at Memorial Hospital and sometimes in Elkhart and Goshen.
He credits a team effort with his wife’s survival in their Granger home. But he’s also realistic, having lived with the harsh reality of ALS.
“She’s had excellent care,” he said. “We take good care of her. She’s got a spirit. She’s tried many more things. For every individual, it’s a difficult decision on how far you want to go.
“Some people,” Magneson’s husband noted, “won’t have the resources and maybe they’ll make that decision (not to fight it any longer). Some people’s diseases progress faster than others.”
Magneson said the disease has been a mystery to the research community for decades.
“I know there are many facets to the disease, but I feel the main reason is biogenetics,” she wrote of her longevity with it. “Some present with a rapid progression; others with a slower presentation.”
Her typical day includes help from her caregivers to shower and get started, with visits from friends later in the morning. Some often come back and help Tom with her care later on.
The couple enjoys watching TV shows like “NCIS” and Sherlock Holme mysteries.
She can’t paint any more.
These days, she’s lost almost all movement. And yet, she fights on.
She can still use her little finger and the upper extremity of her hand, Seiffert said. Though she’s been on a ventilator for the past year, she still participates in life, even communicating with her eyes, said Amy Whipple, Midwest Regional director for the ALS Therapy Development Institute.
“Her eyes tell a story,” said Whipple, who met Magneson more than eight years ago in Boston, when she toured ALS TDI’s lab, which these days is on the verge of a trial drug that could slow down the disease.
“And her smile tells a story,” Whipple added. “And without her even being able to communicate, you can get a vibe from her. That warmth and love and interest, even though she’s a bit of a bystander in terms of communication, that keeps people around.”
That smile, clearly her trademark based on pictures from long ago, is unusual for her condition.
“She can smile, which is sometimes unusual for ALS patients,” Whipple said. “Her eyes are very vibrant and full of life. And her smile is full of life.”
Perhaps it’s the inspiration behind her 8-year-old foundation, Friends for Faye, which has raised more than $1.5 million since 2004.
The foundation already hosted a luncheon in May. Still to come are a tennis tournament Friday at Knollwood Country Club and golf outing June 18 at South Bend Country Club.
“Faye has a lot she wants to accomplish in life,” Whipple said. “It’s evident she’s doing that with the art book she created, and continuing to be a driving force for her fundraising events and she’s got a lot of living still to do.”
Eventually her ability to communicate, even via computers at home with the aid of her eyes, will cease. And then, Seiffert said, then she will have another decision to make.
“Because taking care of somebody you can’t tell needs something or is in pain, is not an ideal situation,” he said.
But the teacher in Magneson still remains.
She held on to her IU post as long as she could, retiring in 2010. There, according to her book, she relished teaching medical students in the techniques of interviewing patients, physical examination and professionalism.
If she could instruct for one more day, Magneson wrote, this is what she would say:
“Live in the present. The past is history, and the future is not promised to us.”
And in typical Magneson fashion, she closed the e-mail with these words: