Acceptance is difficult for most who find out about a loved one’s life-changing medical diagnosis.
For Ellen Jante, the word acceptance has been the fuel to keep her husband Dale Jante, 64, out of a wheelchair despite his Parkinson’s disease diagnosis 21 years ago.
“Parkinson’s disease? I’m not accepting this. I’m going to fight this until the day I die,” said Ellen.
After diagnosis, Dale lived with tremors in addition to losing basic motor functions. He had to leave his career as an accountant. In recent years he developed congestive heart failure and was on both Parkinson’s and heart medications, taking 43 pills per day.
In 2002, Dale read about deep brain stimulation (DBS) therapy after the Food and Drug Administration (FDA) approved it as a treatment for Parkinson’s disease. DBS could not cure Parkinson’s disease, but it could manage symptoms, promising a 50 percent improvement in quality of life. However, the DBS procedure was not covered by Medicare in Wisconsin.
The surgery was covered in 35 other states. Ellen was determined to obtain access for her husband.
She found information about a Medicare panel consisting of 12 doctors that met quarterly in Baltimore. One simple call led to a response from the head of the panel who offered an invitation to appear and speak on behalf of support for DBS therapy.
The Jantes appeared in front of the Medical and Surgical Procedures Panel in 2002 to share their story during the panel’s discussion on the use of DBS for Parkinson’s disease and essential tremor. The panel unanimously approved the surgery. Dale was the first patient to ever appear in front of the panel.
“We knew something has to be done and someone had to do it,” said Ellen.
In November 2002, Dale underwent DBS surgery. He later developed a staph infection and underwent a second surgery in November 2006.
Dale is now down to taking 12 pills per day. He has physical therapy every afternoon and Parkinson’s class twice a week.
Ellen has also become active within the Parkinson’s community and facilitates a Milwaukee support group for patients and carepartners at West Allis Memorial Hospital once a month and also created a side group for carepartners.
“I use the term carepartner because we do need to take care of ourselves and because we really are partners in this fight,” said Ellen.
The Jantes were nominated for a Health Care Hero Award by their eldest daughter Kris Kruzicki, who described her mother as an “Energizer Bunny” for her inspiration to other care providers and for the devoted care of her father.