Farm families battle Parkinson's disease
Proper management, productive lives Farmers are especially susceptible to Parkinson's disease, as are the Midwest and agricultural communities in general, studies show conclusively. The connection isn't fully understood, but exposure to farm chem...
Proper management, productive lives
Farmers are especially susceptible to Parkinson's disease, as are the Midwest and agricultural communities in general, studies show conclusively. The connection isn't fully understood, but exposure to farm chemicals is believed to play a role.
Parkinson's, a potentially crippling neurodegenerative disease, can't be cured, at least not yet. But it can be managed with medication and exercise, and farmers and others afflicted with it can remain productive for many years, especially if the disease is detected early. A strong support system is important, too.
Agweek visited two farmers, one active and one retired, who are successfully managing the disease. It also talked with a physician whose patients include a number of farmers who have it.
'As hard as I can, as long as I can'
PENNOCK, Minn. - Ed Huseby sits on the living room couch, his wife of 51 years beside him, and talks about his ongoing battle with Parkinson's disease.
He hasn't beaten the disease - he knows he can't do that - but Huseby is holding his own.
"The exercise and medication have really helped," he says. "Instead of sitting here on this couch, I'd have a lot more tremors. I'd be lying on it a lot more. I'd be deteriorating at a rapid rate."
This retired farmer and teacher, 72, was first diagnosed with Parkinson's disease in 2010. One of his hands was shaking, but "it wasn't that noticeable," he says. His priority at the time was dealing with severe back problems that required surgery and then two years of convalescence.
In 2012, his back problems resolved, his Parkinson's was confirmed by a neurologist. Neurology is the branch of medicine concerned with the study and treatment of disorders of the nervous system.
By then, Huseby's tremors had become more pronounced. "They were very embarrassing," he says.
He was prescribed medications for the disease, only one of which helped. So he and his doctor considered other options, including what Huseby describes as "very serious surgery."
They decided Huseby would continue his exercise and increase the dosage of the medication that had been doing some good. The combination "really helped," he says
He stresses his appreciation to the medical experts in nearby Willmar, Minn., who recommended he do the exercises in the Big therapy program. It emphasizes bigger movements to improve balance and body movement.
Huseby demonstrates a few of the exercises to visitors and says, "I do them now every day, quite religiously."
Becky, his wife, says she thought Ed had Parkinson's before it was confirmed "because he wasn't swinging his arms when he walked. Now, he swings his arms without even thinking about it because of the Big program."
Farm kid returns home
Ed, a farm kid, met Becky in college. After they married, Ed taught junior high math for six years in the Minneapolis area. Then they moved to Pennock so Ed could farm with his father; Ed also was a special education teacher in Willmar.
"I taught for 27 years and farmed concurrently for 25 years (raising corn and soybeans)," Ed says. " I did it until 1999. I was over 50 then, and when I'd come home from teaching it just got too hard to do a day of farm work."
He nods when asked if farm chemicals may have contributed to his Parkinson's. "I was exposed to it. I really don't know if that was a factor, but I think it's very possible."
He retired from farming in 1999 and teaching in 2002.
"Farming had been my passion," he says. "Teaching had been my passion. When I was farming, I thought, 'Man, it would be tough not to farm.' But it wasn't. I have other interests. I feel proud of that."
His interests include genealogy, the Norwegian language, canoeing and building log buildings in the area.
In his study of the Norwegian language, "I sometimes spend evenings memorizing lists of verbs," he says. "I wouldn't have done that in college. But now the mental activity, I think, is satisfying."
Old age or Parkinson's?
Ed, like others with Parkinson's, says it's often difficult to separate symptoms of the disease from advancing age.
"I get tired very quickly compared with what I used to," he says. "It's always in the back of my mind. Which is which: old age or Parkinson's?"
And also like others with Parkinson's, he says many people aren't sure how to treat him because of the disease.
"There's a lack of knowledge about it," Ed says. "I don't mean that in a derogatory sense. People come up to me and say, 'How are you?' And they look a little more intently into my eyes. They're genuinely concerned, but they really don't know what to say or do."
"Unless you've been touched by it, you really don't know what to expect," Becky says.
She describes her role as "being supportive, but not to do things for him. Right now, he really does everything himself. But I go to the doctor's appointments with him. I help him manage his meds."
Ed, who's good with words, struggles to find the right ones here. They come slowly, a few at a time.
"That's the most difficult to think about, the most scary, is the rate of progression of the disease. And how much I will deteriorate. It's not fun to think of Becky having to take care of me later in life. That's so difficult. But she doesn't complain."
When he's finished, Becky says softly, "For better or worse."
For now, though, the medication and exercise are working, and Ed's life remains productive and enjoyable.
"In the back of my mind, (I've decided) I'm going to go as hard as I can, as long as I can," he says. "That's going to have to be good enough."
'Still living a normal life'
ELIZABETH, Minn. - David Holt worked with doctors for more than six months to figure out why his body wasn't working like it had been. The experts knew something was wrong, but couldn't decide on the cause. Then, on Dec. 30, 2009, he got a firm diagnosis: Parkinson's disease.
He also remembers being told, "You don't die from Parkinson's disease."
Now, nearly seven years later, he remains an active farmer and avid outdoorsman. Though there have been surprises and setbacks along the way, he's optimistic that medication, exercise and positive attitude will give him many more good years, too.
"There's no magic pill. There's nothing that will make this just go away; I'll have it for the rest of my life," he says. "But I still can do most of the things I've always done, and I'll continue doing them as long as I can."
Holt, 67, says now that he may have first begun exhibiting early signs of the disease 20 years ago.
After he was diagnosed with the disease, he went home and began researching it, just as the doctor told him to do.
His research told him that exercise and medication could make a huge difference. And an aunt, who had Parkinson's for more than 30 years, told him that a good diet, exercise and a positive attitude, were vital.
Holt says he fortunate to be doing well, in part because of the three types of medication he takes, but "it's also partly because of the work I've put into this," especially in doing the exercises.
He's involved in both the Big and Loud therapy programs in nearby Fergus Falls, Minn. The former involves big, or exaggerated, physical movements to improve balance and movement. The latter uses repetitive vocal exercises to improve the patient's speech and voice.
Holt demonstrates several of the physical and vocal exercises for visitors and says, "I did them (the Big exercises) diligently for about two years, then I got slack on them."
But he went back for a refresher and became even more aware of how important they are. "I recommend them to anyone who has Parkinson's," he says. "Keep doing the exercises. It's very important." Holt adds that he isn't always as diligent as he should about doing them when he's particularly busy with farm work.
Lorri, his wife, says some people with Parkinson's "don't want to do the exercises. They want a quick fix. But there is no quick fix. You have to do the exercises."
Though he's doing well now, David has had tough stretches, too.
A few years ago, "He was really struggling. Things started going downhill hill," Lorri says. "There were tremors in his right hand. When he was eating, he couldn't get his right hand to his mouth. His energy level had gone way down."
But a change in his medication - "He was undermedicated," Lori says - and work with a neurological chiropractor, as well as his commitment to the exercise, allowed him to rebound.
"You've worked hard to get back to where you are today," Lorri tells her husband.
A chemical bath
Holt worked construction until he was 25, then returned to Elizabeth to farm. He and his father had different farms, but worked together.
Today, David Holt raises corn, soybeans and a little wheat. He also has 15 cows, in part to graze some of his farmland that's not suitable for crop and in part because both he and Lorri enjoy cattle. David and Lorri say they love the farmstead and want to stay there as long as possible.
David says he also loves farming. Though he gave up his rented acres two years ago, he continues to farm his own land and plans to do it as long as his health allows. Like many Minnesota farmers, he enjoyed his best-ever corn and soybean yields in 2016 - no small incentive to keep going.
He thinks exposure to farm chemicals years ago contributed to his Parkinson's.
"When I started farming, there was so much of it. I inhaled it. I'd be sitting on an open crop sprayer, and every once in awhile the wind would give you a bath," he says. "You just didn't have any idea (then) of how it would affect you. Is that part of it (having Parkinson's)? I'm sure it is."
'My husband, not my child'
Lorri says spouses and close relatives of people with Parkinson's "need to let them do things themselves. Don't let them rely on your for everything. When he first got the disease, I thought, 'Oh, I need to take care of him now.'" But she soon realized, "He needs to stay independent. He's my husband, not my child."
Over time, "I've learned to have more patience," she says. "There's a fine line between supporting him doing it and doing it for him."
One example of that support: "When he shuffles in the morning, I tell him to pick up his feet," Lorri says.
"Her support has been tremendous," David says. "When I don't get something quite right, or it takes a little longer, she understands."
As he gets older, "There's more fatigue," David says. "I don't put in the long days like I used to. But is that the Parkinson's. Or is it part of old age?" He shrugs and answers his own question: "It's both."
Lorri says, "We can't stay out as late at night socializing with friends (as we used to). That's definitely the Parkinson's."
But the disease's impact has been greatly reduced through exercise, medication and positive thinking, the Holts say.
"I'd be sitting on a chair, not moving" without them, David says.
Lorri says her husband "would need assistance with eating, walking, bathing and just his normal life."
David's advice to people who think they might have Parkinson's:
"As you get older, you get slower. You get more aches and pains. (But maybe) it's not all old age. If you feel there's some area of your body that's not right, make an appointment. See a doctor. Don't be afraid to, because the sooner you do it, the sooner you can get the medication and be aware of what your problem is."
Lorri's advice to spouses and close relatives of people with Parkinson's:
"You can't do everything for them. Give them some assistance and encouragement. Go out and find those things that will help them with the Parkinson's."
David says he knows his Parkinson's "isn't going away. But I can try to manage it, and I'm still living a normal life. I will as long as I can."
'That's our goal'
FARGO, N.D. - There's no cure for Parkinson's disease, at least not yet. But there's hope for people who manage it, Dr. Tanya Harlow says.
"That's our goal for people; to help them function as best as they can as long as they can. Certainly there are people with Parkinson's who continue to work for many years," says Harlow, both a neurologist and movement disorder specialist with Sanford Health in Fargo, N.D.
Her patients include farmers and others with Parkinson's disease.
A neurologist is trained to treat all neurological diseases, or diseases of the brain, spine and the nerves that connect them. A movement disorder specialist has specialized training in movement disorders, one of which is Parkinson's.
Parkinson's is believed to be caused by a combination of genetic and environmental factors, with farm chemicals playing a role in some cases, Harlow says.
"It's not one thing for every single person," she said.
The disease also is related to age, becoming more common as people get older, she said.
But medication can help to manage the disease, and exercise can lead to significant improvement, especially when the exercise is designed specifically to help people with the disease, she says.
Harlow says an "explosion of research" in recent years has created a number of new medications and treatments. The hope is, research eventually will lead to a cure that will stop, or at least slow progression of, the disease.
Actor Michael J. Fox, who has Parkinson's, has increased public awareness of it, and his foundation has helped raise money for research," she says.
"He's been a great spokesman for the disease," she says.
People who suspect they have Parkinson's disease should start with their primary care physician, who could then refer them to a neurologist, Harlow says.
To learn more:
People diagnosed with Parkinson's and their families are strongly encouraged to learn more about the disease. Here are some good places to start:
• National Parkinson Foundation: parkinson.org/understanding-parkinsons.
• American Parkinson Disease Association: apdaparkinson.org.
• Michael J. Fox Foundation for Parkinson's Research: michaeljfox.org.
• International Parkinson and Movement Disorder Association: movementdisorders.org.
Parkinson's disease: The basics
• A neurodegenerative disease first described in 1817 by James Parkinson, a British doctor.
• An estimated 1 million Americans live with the disease, which is most common in the Midwest and Northeast. Farm chemicals and industrial metals in those regions, respectively, are believed to be at least partly responsible.
• Caused by the loss of dopamine-producing cells in the brain. Dopamine is a chemical that plays numerous roles in humans, including helping to regulate movement.
• Not fatal in itself, but related complications can shorten life expectancy.
• Incidence rate increases with age, and most people with it are over the age 60. But 10 percent of people with Parkinson's are diagnosed under the age of 50.
• Medication and exercise can alleviate, but not prevent, symptoms of the disease.
• The Big and Loud therapy programs are often recommended for people with Parkinson's. Big trains patients to make bigger movements, helping them improve their walking, balance and movement of arms and legs. Loud improves the patient's voice and speech by repetitive vocal exercises.
Recognize the symptoms
Parkinson's disease has both motor and non-motor symptoms. The National Parkinson's Foundation says symptoms of the disease "vary from person to person and change over time." The organization also says a diagnosis of the disease is considered only when two of the these four main motor symptoms are present over time:
• Slowness of movement.
• Involuntary shaking.
• Stiffness of of the arms, legs or trunk.
• Trouble with balance.
There are secondary motor symptoms, too, including reduced arm swing on the affected side and muffled speech.
Non-motor symptoms are "diverse," the National Parkinson's Foundation says, and include mood disorders, pain, fatigue, vision problems and loss of sense or smell. Some people develop non-motor symptoms years before their Parkinson's disease is diagnosed.