Living with Parkinson's disease
Life doesn’t offer many guarantees, but the polka does. It guarantees a smile.
The lively, fast-paced dance is part of Judi Weiland’s Czech heritage. Weiland, a Wellmark member who lives in Garner, Iowa, taught her signature dance move to her two adult children. Now she wants to pass it on to her five grandchildren, ages 1 through 9. They call her “Nonna.”
“They say, ‘Nonna, we don’t need to learn how to do that,’” laughs Weiland. “But when Nonna says it’s time to polka, we polka. Why? Because it’s hard to polka with a frown on your face.” The waltz is also high on her list of dance moves to teach the grandkids.
Dancing doesn’t come as easy to Weiland as it did years ago. “I have never been very coordinated,” says the 63-year-old Weiland. “And, I certainly haven’t improved with age. Of course, Parkinson’s has made it even more challenging. Despite my limitations, dancing is something I refuse to give up.”
Humbly taking the lead
Humility is something Weiland has acquired more of since her journey with the disease began in 2005. Attending her first conference to learn about Parkinson’s disease, she was overcome with the reality of it. This was not the future she had imagined for herself. “Seeing all the people in various stages of the disease really affected me,” she confesses. “I had to leave the room. I remember locking myself in a bathroom stall. There, the tears just kept flowing.”
She felt humbled by the disease, but she felt something else, too. “It lit a fire in me,” she says. “I saw where my life may be headed. But more importantly, I saw hope for my future.”
This event spurred a number of changes in the way Weiland approached Parkinson’s. She came home and poured over the research, finding inspiration in personal stories and the latest treatments. This led to some difficult, but critical, choices. And throughout her treatment, she became more optimistic; more hopeful.
Judi and Don Weiland take a break from the fall harvest to enjoy time with three of their grandchildren (from left): Lucas, Anna and Louisa.
“Sure, my life is not what I imagined. But after more than a decade living with the disease, I am certain there is life after Parkinson’s,” says Weiland. “My goal is to be active in the lives of my grandchildren. It motivates me. And to make that happen, I need the best outcomes. To get the best outcomes, I must advocate for myself. This means I must learn all I can about the disease. I must pay attention to my body and my health. I must speak up at the doctor’s office. I must take the lead. Sure, my family is incredibly supportive. But, it’s critical for me to be my own cheerleader.”
A critical first step: Getting the right diagnosis
Perseverance is another trait Weiland has perfected since she was diagnosed with the disease.
Throughout their marriage, Judi and her husband, Don, made their living running a large farm together. In this line of work, determination comes with the territory. So, when her hand tremors started at age 51, they didn’t ignore it.
At such a young age, Weiland was an unlikely candidate for Parkinson’s disease. The likely diagnosis was essential tremors, a disorder that causes involuntary and rhythmic shaking. After seeing a series of doctors, however, the diagnosis remained unclear. Not satisfied with the uncertainty, she visited a Parkinson’s Foundation Center of Excellence. There, a series of tests confirmed a diagnosis.
Weiland caught her Parkinson’s early, only a few months after the initial tremor took place. "It is really important to get the right diagnosis to start the appropriate treatment and improve the quality of life for a patient," says Dr. Lynn Struck, a neurologist at UnityPoint Health in Des Moines, Iowa. Struck is medical director of the Iowa Parkinson Disease Information and Referral Center.
"Parkinson's is a clinical diagnosis, meaning it's based on medical history, a review of signs and symptoms and physical and neurological exams. Other testing may also be considered by your neurologist, depending on symptoms," says Dr. Struck.
Searching for the best outcomes
For the longest time—nearly 10 years—Weiland had her Parkinson’s under control with medication. The frequency and dosage increased regularly. But, gradually, she became dissatisfied with the care she was receiving from her neurologist. So she sought care elsewhere and found Dr. Struck. During that time, Weiland learned she was severely undermedicated. Among other things, she learned she might be a candidate for a ground breaking surgery called Deep Brain Stimulation (DBS ).
Weiland was familiar with DBS, as she had researched it following one of the conferences she attended. Initially, it seemed frightening. “We’re talking brain surgery. You’re awake,” says Weiland. “This is no picnic.”
The time came, and Weiland underwent the rigorous tests required to qualify for the intense, two-part surgery. The tests confirmed she was a candidate for the surgery, which was completed in February 2017.
The first part of DBS surgery involves drilling into the skull to implant electrodes in certain areas of the brain. Once the electrodes "go live", they produce electrical impulses that regulate abnormal impulses. They can also affect certain cells and chemicals within the brain, such as dopamine.
The second part of the surgery is the implantation of a pacemaker-like device under the skin of the upper chest, with wires that travel under the skin to connect the device to the electrodes in the brain.
“It is as grueling as it sounds,” says Weiland. It took several months to recover from the surgery and adjust to the new way of life.
Cost share and coverage for DBS depends on your specific benefits. Be sure to log in to myWellmark® or check your coverage manual before receiving any services or procedures.
Is she better?
“Heavens, yes!” exclaims Weiland. “My quality of life has drastically improved. I’m more animated — less stiff.” Weiland’s doctors estimate the surgery reversed at least 5 years off her Parkinson’s symptoms.
"The surgery improves symptoms a great deal and most patients are able to reduce the amount of medication taken by 30–40 percent," says Dr. Struck.
“The beauty of the whole thing is that as the disease progresses, I won’t have to increase my medications,” says Weiland. Rather, the stimulator is adjusted to meet her needs.
“It allows me freedom. I can walk in the morning — without medication — not TOTALLY normally, but as close to it as possible,” she says. “Put it this way: My nephew got married in September. I danced at the wedding.”
Also, she can hold her new granddaughter, who was born last July. “I couldn’t do this safely before, because of the shaking. Honestly, I cannot describe for you the joy this brings me.”
Another difference-maker is that Weiland no longer feels limited by the disease. She exercises regularly, walking at least three miles a day, plus she regularly takes part in yoga and spinning classes. She gardens and helps out on the farm where she can, which is now run by her adult son and his family. She even volunteers at the nursing home.
“The disease will continue to progress. That’s inevitable. But I have hope for my future,” says Weiland. “A big part of this is my faith, which has grown much deeper since my diagnosis. It sustains me. I understand that God has not promised any of us an easy life. But faith can bring you to a place of peace and contentment.”
So she spends time with her grandchildren, teaching them, among other things, how to polka and waltz. Every step of the way, Weiland knows that Parkinson’s research is ongoing and promising. New therapies may come along that change the course of the disease. In the meantime, you’ll find her enjoying the here and now.
Weiland answers a few questions about her 12-year journey with the disease:
“My husband, Don. He knows me best, and boy, he has been there for me.”
Do you still have tremors?
“For the most part, no. However, if I’m in a situation where I’m nervous or scared about something, I have breakthrough trembling.”
Do people interact differently with you?
“I’ve noticed my family tries to protect me from anything that makes me nervous or anxious. I sense they don’t tell me everything. If there is a problem on the farm, for example, I don’t hear about it.”
Downside of surgery?
“Well, there is what looks like a 9-volt battery protruding from my chest. It’s not beautiful. I certainly don’t like the look of it. But I have to put all that aside. It has improved the quality of my life tremendously.”
“There are things I choose not to do. I go only two steps up on my stepladder. I don’t have many throw rugs. I don’t wash my own windows anymore. I hold onto the rail going up and down the stairs. I simply don’t want to fall. I have completely given up riding a bike outdoors.”
“Being a burden to my family, and not being able to see my grandkids grow up.”
How has Parkinson’s changed you?
“I am far more empathetic. When you see someone, you notice the physical — the outside. You don’t see what’s going on inside. We all have things going on medically, spiritually, emotionally that no one else knows about. We’re all struggling with something.”
Best advice for someone with Parkinson’s
"Find the best doctor you can. If the doctor is not helping you with your symptoms, find another doctor. You have to advocate for yourself. You must persist. If something isn’t working, try something else.”