Local woman honored for caregiving for husband, advocacy for families living with Parkinson’s
LEE B. ROBERTS firstname.lastname@example.org
Ellen and Dale Jante of Union Grove sit in the basement of their home on Oct. 6. Ellen cares for her husband, Dale, who has Parkinson’s disease. Ellen Jante was recognized in October by the Davis Phinney Foundation for her dedication to the Parkinson’s community inside and outside the home. Dale is a collector of model tractors and farm equipment. (Scott Anderson, email@example.com)
UNION GROVE – The news that she was being given a Local Hero award by the Davis Phinney Foundation took Ellen Jante completely by surprise a couple months ago. Jante and her husband, Dale, had nominated two other people for the award and were hoping one of them would win the honor, which is given to people dealing with Parkinson’s disease who are inspirations to others in their communities.
“There are so many people that deserve this award,” said Jante, a Union Grove resident who is the primary caregiver for Dale, who was diagnosed with Parkinson’s more than 20 years ago. “I am very honored.”
While caregivers in general may be considered heroes, Ellen Jante’s hero status stems not only from her longtime involvement in the southeastern Wisconsin Parkinson’s community, where she and Dale co-facilitate a Parkinson’s support group, but for championing a major change in Medicare reimbursement for people with Parkinson’s.
Her work in that area began back in 2002 when she and Dale began researching Deep Brain Stimulation as a treatment that would allow Dale to reduce the amount of medication he was taking, as well as reduce his tremor. After determining that the brain surgery would be less of a risk than the medications’ side effects, the Jantes found a neurosurgeon in Milwaukee who would perform the surgery. The bad news was that Medicare would not cover the $55,000 cost of the procedure in Wisconsin.
That was not the answer Ellen, or Dale, wanted to hear. She called the head of Medicare for Wisconsin and asked why the surgery was not covered here, when it was covered in 35 other states. Ellen was told that Wisconsin Physicians Service controlled Medicare coverage in some states and that unless the National Medicare Panel decided to cover it, that she and Dale were out of luck.
On a mission
Advocacy was not something she was particularly experienced at back then, but Ellen quickly rose to the occasion.
“I’m a fighter and I don’t have much patience for doing things the wrong way,” she said. “It never occurred to us NOT to look into how they would make such a decision.”
Teaching herself how to navigate the Internet, Ellen learned that the National Medicare Panel would meet in Baltimore in June 2002 to determine whether DBS would be covered by Medicare nationally. She began sending members of the panel e-mail and voicemail messages asking them to vote in favor of coverage, and continued to do so for a while.
“It just became a mission,” Ellen said.
The panel’s response came in the form of a phone call to the Jantes from its head, offering them the opportunity to give a five-minute presentation to the panel. Armed with more than 3,000 signatures they’d collected in support of their effort in just three weeks, the couple traveled to Baltimore. It was the first time a Parkinson’s patient had ever appeared before the panel, Ellen said, and within an hour of her sharing their message of what it is like to live with Parkinson’s, the panel called for a vote.
“It was a unanimous ‘yes,’ ” Ellen said.
Describing their time in Baltimore as “quite an experience,” she said that some panel members shook their hands, expressing their admiration for them having the guts to make their appeal in person.
For the Jantes, it was simply “the right thing to do.”
“We didn’t do it just for Dale,” Ellen said. “I was appalled that there were still some states where the surgery wasn’t covered. We were speaking up for all of those people too.”
Four months later, Dale had the brain surgery and since then, thousands of others have enjoyed a better lifestyle because of the Jantes’ willingness to fight for the surgery to be covered. Some of those patients’ surgeons have thanked the Jantes for their advocacy.
“DBS was a lifesaver for us,” Ellen said of the surgery. “Dale not only lost his tremor, but also the stiffness that cause him to ‘freeze’ often.”
Dale was also able to reduce his medication to half of what it was, and the surgery seemed to slow the progression of PD, she said.
“Dale is better today than he was four years ago.”
Heroes all around
Since receiving the Local Hero award, which was given to Ellen on Oct. 10 in Milwaukee during the Davis Phinney Foundation’s Victory Summit (an educational and inspirational event for families living with Parkinson’s disease), Jante has returned to her other life roles as caregiver; wife, mother and grandmother; and executive recruiter for Management Recruiters of Racine.
She and Dale continue to be very active in the 90-member support group they co-facilitate with another couple, as well as in a Parkinson’s exercise group and other activities. Ellen has also been asked to speak to various groups, including groups of caregivers and physical therapists. And somewhere in between, she and Dale still manage to find a little time for fun.
Part of Dale’s recent speech therapy is singing, and both of them have been enjoying singing along with a compact disc of 1960s songs that one of their daughters recorded for them, as they ride in the car.
“It not only gets us singing, but gets us laughing,” Ellen said.
The Jantes’ positive attitude goes a long way in making their journey with Parkinson’s livable. They also credit all the help they’ve had along the way from many people, including their children and grandchildren, their church family at Yorkville United Methodist Church, and Ellen’s employers at Management Recruiters of Racine.
“I really appreciate that they have allowed me to work a flex schedule so that I can take care of Dale,” Ellen said.
All of those people, and more, seem like heroes to Ellen.
“The real heroes are the patients who live with Parkinson’s for many years and never have the chance to live a normal life,” she said.