Don't judge: It's Parkinson's

April 15, 2016

Pam Tritz-Okia

Sometimes at the end of the day, Pam Tritz-Okia sits down in a chair and doesn't get up for an hour.

Her two teenage sons and husband know to go on with their evening, preparing dinner and leaving her alone.

For Tritz-Okia, it's not your normal type of tired.

It's Parkinson's disease.

"I get home, I sit down, and sometimes I'll sit there and I don't know if I have the energy to walk to the bathroom. And I don't have the energy to turn on the TV. I literally just sit," Tritz-Okia said.Since her diagnosis in 2009, she and her husband have learned to plan more carefully and her boys have developed a stronger sense of empathy.

To share these experiences and to learn more, Tritz-Okia joined a St. Cloud support group for people with the neurodegenerative disorder and their caregivers.

The group has more than tripled since she started facilitating it a few years ago. At nearly 160 members, usually 40-50 show up at a monthly meeting at St. Cloud Public Library, but all are linked via the email.

The newly diagnosed often don't know what to expect, other than what they've seen from famous cases — Michael J. Fox, Muhammad Ali Janet Reno and others.Parkinson's can be difficult to diagnose because every case is unique. For instance, Tritz-Okia's was originally thought to be carpal tunnel because of an extreme pain in her right hand.

A speaker outlines some facts about Parkinson's disease during a Parkinson's support group meeting Monday, March 21, at St. Cloud Public Library. (Photo: Dave Schwarz, dschwarz@stcloudtimes.com)

The progression is slow in most people, and many live for years with the disease, according to the National Parkinson's Foundation.

With Parkinson's, a person's brain slowly stops producing dopamine, a neurotransmitter. With less dopamine, a person has less ability to regulate movements and emotions.

The disease itself is not fatal, but complications can arise. There is no cure, but doctors can treat symptoms to try and maintain quality of life.

Most experts believe it is caused by a combination of genetic and environmental factors. About 10-15 percent of cases are thought to be genetic. The average age of diagnosis is 62, and about 2 percent of the 1 million people with Parkinson's are thought to be below the age of 40.

Parkinson's is more common in whites and in men and has a higher incidence in the Midwest and northeastern U.S.

Many chemicals have been associated with the disease, and the chemicals are among those used in welding, farming, military activities and industrial processes. Some risk factors include: insecticides, fungicides, herbicides, head injuries and Agent Orange, which was used in the Vietnam War.

The disease covers a wide range of symptoms that go beyond a tremor, from those that don't interfere with daily life to those that require around-the-clock care.People with Parkinson's can have sensory mishits, where something tastes or smells like something it's not.

For instance, Tritz-Okia often smells smoke in the middle of the night.

"I get up and I start checking every room. ... You know it's not real, but it's such a strong smell you have to check," Tritz-Okia said.

For St. Cloud resident Marlyn Anderson's husband Charlie, his most significant symptoms are stooping and stiffness.

Diagnosed in 2015, the stoop even affects Charlie's vision. His bifocals don't work the way they're meant to when he's stooped over. His condition is complicated by Type 2 diabetes.

Treatments include various medications, surgical procedures such as deep brain stimulation, as well as lifestyle remedies, such as exercise and nutrition.

Because you're dealing with the brain, medication affects everyone differently, so patients and doctors will tinker with dosage, frequency and timing of medications to find what works well.

"You become extremely aware of your body," Tritz-Okia said.  Sometimes, the caregiver becomes extremely aware of the the person they're caring for.

People perform exercises during a Parkinson's support group meeting Monday, March 21, at St. Cloud Public Library. (Photo: Dave Schwarz, dschwarz@stcloudtimes.com)

Exercise also helps. Research shows people with Parkinson's who exercise a minimum of two and a half hours a week slowed the decline in quality of life.

In the support group, they learn about adaptive martial arts and Nordic walking, a form of fitness walking that uses specially designed walking poles. Tritz-Okia has a 30-minute sequence of stretches she does before she even gets out of bed.

Pete Froehle of St. Cloud used to bike and cross-country ski but hasn't been able to as his balance has worsened. Through the support group, he was introduced to Nordic walking.

"Doing that is a way for me to walk and not worry about my balance too much," he said. He uses poles to steady himself.

It lets him get out of the house. "That's where life should be done, is outside," he said.

Ruth and Arlen Johnson took the surgical route. Ruth was diagnosed in 1988, when she was in her mid-40s. As her symptoms progressed, medication wasn't helping and her quality of life was really poor. So she and Arlen explored deep brain stimulation, getting the surgery in 2004.

"As soon as the surgeon turned the battery on, she was a different person," Arlen said.

It worked so well the couple was even able to give away her motorized wheelchair. More than 10 years later, she can still walk.

The group offers an opportunity to compare notes, brainstorm and problem solve. They discuss ways to make the world friendlier for people with Parkinson's and others with disabilities.

Simple changes like sink and door handles that don't require a twisting motion, adding ramps and handrails, removing rugs and installing motion lights can all help. Even electric toothbrushes and smartphones are useful.

The group invites professionals to speak, on understanding the diagnosis, treatments, ways to make life easier, acupuncture, physical therapy, exercises, finances and more.

Another mission of the group is to raise awareness. When a Parkinson's person is in public, their symptoms can be misinterpreted for intoxication. You'll sometimes hear: "I'm not drunk. It's Parkinson's!"

The slogan catches people's attention and gives a pretty good visual of what Parkinson's may look like, if people aren't familiar. Characteristics like slurred words, balance, masked face and blurry eyes, tearing eyes, shaking or not walking smoothly, are common to both.

Care for caregivers is important too. It's hard to watch your loved one's health decline and it's exhausting, physically and emotionally. When Tritz-Okia saw her sons having to care for her, she had mixed feelings.

"I had this misunderstanding that I was always supposed to take care of them. That blossomed into the idea that we're a family and we take care of each other," Tritz-Okia said.

Marlyn Anderson says as a caregiver she's learned to be more patient. It may be faster and easier to go grocery shopping alone, but going to the store may be her husband's only chance to get out that day.

"I have to change my thinking and accept that that is a good thing for him," she said.

Sometimes, they'll divide up the support group between Parkinson's people and caregivers.

The group helps each deal with the complex emotions involved.

What's most important in dealing with the diagnosis?

Patience, being honest with yourself and working with the cards you're dealt, Tritz-Okia said.

There is some mourning that goes along with the initial diagnosis, Tritz-Okia said.

"I would call it an extreme depression," she said, "Did I got through it? You bet."

She had to quit a job that required public speaking because her tremors were too distracting to audiences.

"It just made me realize I was walking into a new chapter of my life," Tritz-Okia said.

She's not alone.

"A lot of people live in denial, which is the worst thing you can do," caregiver Arlen said.

That was true for Mary Kay Wagner of St. Cloud,  diagnosed in 1997. She joined the support group a few years ago.

"I didn't want to admit that I had the disease for a long time. I didn't tell anybody. I just didn't want to be one of those people," Wagner said.

Though her condition has taken away her job and activities like golfing and dance, she's found other ways to stay active. Now she swims at the YMCA and has found other activities, such as watercolor painting and scrapbooking.

Along the way, Wagner found a letter a woman wrote for her husband with Parkinson's, explaining the condition to those who are unfamiliar.

"Patience, my friend," it reads. "I need you. I'm the same person. I've just slowed down."

To recognize Parkinson's Awareness Month in April, the St. Cloud Parkinson's disease support group is inviting the public to an event.

When:1-3 p.m. Monday. 

Where: Independent Lifestyles in Sauk Rapids.

What: The event includes demonstrations of adapted martial arts and Nordic walking, information about Parkinson's and members' "two cents" on Parkinson's.

10 early warning signs of Parkinson's Disease

Tremor or shaking: Can be in fingers, thumbs, hands, chin, lips, legs

Small handwriting: Writing has gotten much smaller than in the past. 

Loss of smell: Unable to smell certain foods. 

Trouble sleeping: Thrashing around in bed or sudden movements during the night disrupt sleep. 

Trouble walking or moving: Stiffness in the body, arms or legs.

Constipation: Straining to move your bowels, on a daily basis. 

Low voice: Speaking softly, or a significant change in your voice.

Masked face: Face doesn't register emotion, or often looks serious or mad. Blank stare or not blinking eyes often is also a sign. 

Dizziness or fainting: Dizzy when standing up, which can be linked to low blood pressure. 

Stooping or hunching over: Not standing as straight as you used to, leaning or slouching. 

*Note: These symptoms obviously may indicate other health problems. 

For more details, visit parkinson.org/understanding-parkinsons/10-early-warning-signs.

Source: National Parkinson Foundation. 

By the numbers

As many as 1 million Americans live with Parkinson's. That's more than the combined number of people diagnosed with multiple sclerosis, muscular dystrophy and Lou Gehrig's disease (ALS). 

Complications from Parkinson's are the 14th leading cause of death in the U.S., according to the Centers for Disease Control and Prevention.

About 60,000 Americans are diagnosed yearly, but many cases go undetected. 

About 10 million people worldwide live with Parkinson's. 

Men are one and a half times more like to have Parkinson's than women. 

The combined direct and indirect cost of Parkinsons, including treatment, Social Security payments and lost income, is estimated to be nearly $25 million in the U.S. 

Medication costs for one person can average $2,500 a year, and surgery can cost up to $100,000 per patient. 

Source: Parkinson's Disease Foundation. 

Resources

St. Cloud Parkinson's disease support group: Meets the third Monday of the month from 1-2:30 p.m. at St. Cloud Public Library. For more information, contact Pam Tritz-Okia at 763-350-0368 or pamt@independentlifestyles.org. 
National Parkinson Foundation Minnesota: www.parinsonmn.org.            
National Parkinson Foundation: parkinson.org.            
Parkinson's Disease Foundation: www.pdf.org.

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