A group of men and women from the Northwoods recently gathered at The Lakeland Times. They all had something in common - Parkinson's disease - and each had a story they were willing to share with our readers in the hope of providing a better understanding of the disease.
When the general public thinks of Parkinson's at all, most tend to think of tremors, or involuntary movement of the limbs (per Michael J. Fox). However, you will see that is not true. There are many symptoms of the disease. Among them:
Muscle rigidity and stiffness
Loss of balance and coordination
Gait (walking pattern) disturbance
Slow movements and difficulty with voluntary movements
Aches in muscles
Tremors and shaking
Fixed, mask-like facial expression
Slow, monotone speech
Impairment of fine-motor skills
Falling when walking
Impairment in cognitive/intellectual ability
Those that came together at the Times are a part of the 50 member Parkinson's Support Group that meets at Ascension Lutheran Church from 10:30 to noon on the second Tuesday of each month.
Sharing their stories helps them to gain a deeper understanding of the disease as each face different symptoms, both in type and severity. And, most of all, coming together provides the support they all need as they travel this still mysterious road called Parkinson's.
Mark Strosahl of Hazelhurst was diagnosed with Parkinson's in 2009. He had a wide range of symptoms. This is what happened in his own words:
"I had extreme tightness and aching in my muscles through my torso and limbs. This resulted in an impaired gait, bad balance, significant pain and a stooped forward stance. I also did not swing my right arm when walking.
"I was having visual problems where I couldn't focus or look at a computer screen, TV, etc. I had difficulty while driving. If I was at all close to the vehicle in front of me, I became fatigued very quickly. It turned out that my eyes were not focusing on the same plane.
"I was having trouble swallowing and speaking up. I had the 'mask face' and I couldn't whistle any more.
"I was significantly depressed and agitated at the same time. My wife said it scared her to look into my face. I also became very isolated and couldn't conduct my vocational activities. We became desperate for an answer as to what was causing all this, as it was so foreign to my usual self.
"I also had tremors in my right hand, arm and leg. When I walked it was like slugging through the mud.
"And yet, I think that my subconscious wanted to forget all that struggle.
"Two doctors said it was not Parkinson's. Then I saw a neurologist - a movement disorder specialist - and learned, that indeed, it was Parkinson's.
"Once diagnosed, the medication slowly began to mitigate most of the symptoms to a significant degree, but it took six months to get the disease under control. My medication was ramped up and added to over a period of nine months or so to my current level. They now balance my medications twice a year.
"Tremors in my right hand, arm and leg continue, but at a lesser degree.
"In general, some days are better than others."
Norma Semling of Eagle River was diagnosed with the disease in 2000.
"I saw my regular doctor, who suspected it might be Parkinson's and sent me to several other doctors," said Ellen. "All thought it might be Parkinson's, but were unsure."
So, Ellen went to Rochester, Minn., and spent two weeks at the Mayo Clinic. It was here she received her answer. It was yes - she had Parkinson's.
"I had finger and toe tremors and developed a strange walk. It was not a dramatic difference, but it was not my usual walk.
"My Parkinson's was very mild for the past 10 years. Now it has become slightly worse - more debilitating - and I can't concentrate. I became very anxious that I couldn't do the work at the Merrill business I had started in 1981.
"It was strange. My mind would tell my body to walk, but I couldn't. When I move, I move all over. People think I have multiple sclerosis, but it is a reaction to my medications. Some people think I'm drunk when I'm in a bar. I need them to know I'm not."
Then a strange thing happened.
"What happened to me, happens to many who have Parkinson's.
"The disease brought out my creative side. I found I had hidden artistic skills and began to paint, mostly on vases, and I also began writing poetry. I have sold many of my vases and they are pictured in some Parkinson's publications.
"Lately, I have been thinking about having Deep Brain Stimulation (DBS) surgery for my tremors. This is a procedure in which a DBS electrode with four electrical contacts is implanted into target areas in the brain. The lead from the electrodes is connected to an impulse generator, located beneath the skin near the chest, which, in turn, delivers electrical impulses to target areas of the brain.
"It will control my tremors, but I don't think I'm quite there yet as I have no big tremors. However, it is also likely that when my medications are at their peak, surgery won't help.
"I have done a lot of reading on the disease and looked back over my life to try and pinpoint what might have caused it. Was it the pesticides I was exposed to? I was hit in the head in 1974 and had a concussion, was that it, or was it from the well water in rural areas? It's a mystery.
"I had the opportunity to meet Michael J. Fox and Davis Phinney, a gold medalist in bicycling. They were very inspirational."
Norma continues to take each day as it comes, encourage her creative side, and continue her study of the disease.
Don Barnes, who lives at Timber Ridge, was diagnosed with Parkinson's by Dr. Fossen of the Marshfield Clinic in 1999.
Don had many of the nine symptoms that are so common. He had excessive saliva, micrographia (small writing), common facial expressions, and tremors. The symptoms had begun with tremors in his legs 20 years before the diagnosis.
Loss of dopamine in the brain is a cause of Parkinson's. Dopamine is a neurotransmitter linked to motor/movement disorders. One type of dopamine works in the brain movement and motor system.
As this level of dopamine decreases below the "normal range" a person begins to experience more motor and gross-movement problems. Very low levels of Dopamine in the motor areas of the brain are known to produce Parkinson's disease.
When Don was diagnosed he had lost 80 to 90 percent of his dopamine.
Don had stuttered all his life, but it has become much worse in the last half dozen years.
Parkinson's has been particularly difficult for Don. He was an adjunct professor at the University of Minnesota for 30 years. A scientist and plant geneticist he was also a research leader in agronomy for the United States Department of Agriculture (USDA) and gave speeches to groups around he world.
"Now I have terrible speech. It bugs the hell out of me. It is socially hindering. It is hard to maintain a conversation and it is isolating. It is just very difficult," Don said.
For three years he worked with rotenone, an odorless chemical that is used as a broad spectrum insecticide, piscicide, and pesticide, to kill the weedy, invasive plant tephriosia that was invading the lakes. It was a natural compound and people believed that it was all right. Could that have been the cause of Don's Parkinson's?
We also learned that Dennis Leith, another Parkinson's victim, worked with rotenone, providing more suspicion.
As a young scientist working with rotenone, he worked with many young scientists in Puerto Rico. Don and his wife, Joyce, traveled to the country to track these colleagues, but were not able to locate them, so got no answers.
Today the work with rotenone is no longer being done.
Don, by choice, continues to become more isolated. His Parkinson's is chronic and his future doesn't look all that promising.
He is becoming depressed about his condition and relies on his support group to bolster his spirits. We will explore his wife, Joyce's role as a caretaker in a subsequent issue of The Lakeland Times.
Ella Toigo was diagnosed with Parkinson's in November of 1999.
"Two weeks after I stopped smoking the Parkinson's started. My left foot wouldn't stop shaking," I asked the doctor if I should start smoking again and he said, 'no.'
Ella went on to the Mayo Clinic. Her symptoms were mild and at first they thought it was a thyroid problem, for her only other symptom was that her hand on her left side shook mildly. She continued to function quite well.
But they did finally conclude it was Parkinson's.
"I found the medications they prescribed did not help as much as I hoped, bit just continued on. I use a cane because my balance is off.
"My medications, which I take three times a day, put me to sleep. I just can't keep my eyes open. So I find myself relying on my cane for balance and my stamina for movement.
"I try to exercise, but it can be pretty horrible as I can't turn over. Also, I can't do quick turn arounds. I had been taking 'teeny' steps when I walked and now I am trying to take bigger steps.
"I still sew and quilt on my good days and am a member of the Ladies of the Lake Quilt Guild. This is something I enjoy. When I was younger, I stitched hankies by hand.
"I have cheated the feelings of depression. In fact, I think that I was very fortunate to have gotten Parkinson's so late in life."
A neurologist in Wausau diagnosed Dennis with Parkinson's disease in 2003.
"I knew something was wrong when my arm kept going up involuntarily. Today, when I look back at photos of me giving various speeches, I noticed I kept my left hand in my pocket.
Leith's mother had had Parkinson's and his uncle and his father had severe tremors, so the diagnosis didn't come as a complete surprise.
"I could see my mother's symptoms developing in my body."
He lost his mother in June of 2007. She spent the last years of her life in an assisted care facility in Lake Geneva.
After the diagnosis, Dennis became depressed and was determined to hide the symptoms from everyone.
He was successful for the next two years as he continued to work for the Department of Natural Resources as superintendent of the Northern Highland-American Legion State Forest.
As his Parkinson's continued to progress, he underwent DPS in 2007.
"I agreed to the surgery because I was concerned with the number of meds I was taking each day - they numbered 30. If this surgery could reduce that number, it would be worth it."
The surgery helped quite a bit with the tremors and reduced his number of meds to 12.
With this improvement, his depression passed.
The above quotes are from an interview with Leith that we did in early 2008.
Today he is still a strong believer in the benefits of the support group.
"In 2008 we numbered just 15. Today, we number 50 and are still growing. They come to our group from throughout the Northwoods, as we are the only such group in the north."
Dennis is also continues to be a member of the Caring Committee at Ascension Lutheran. A group that checks on the ill and the elderly.
"This has always been very fulfilling for me. I talk with them, play cards, etc. These visits have given me a greater understanding of the stress of being a caregiver.
"Serving on this committee I have also discovered that there are many who are worse off than I am.
"I am now trying to live a more normal life." I still goes out as a cook and guide in hunting season, and I still fish and swim. I just do everything more slowly.
In the past two years I have continued to have good days and bad days. I rely on my support group. They are good people to talk to - an inspiration - we understand each other.
"I still walk quite a bit, but find I use the treadmill more and more."
The disease has now progressed to his right side, but Dennis still remains optimistic, betting on research and science to find a cause and cure.
"It has been wonderful to see how the community has opened its hearts to us. I am also thankful for my many good friends. They continue to include Ginny and me in their activities. This is such a positive.
"My wife, Ginny, and I recently returned from a vacation in Tucson. I call it my 'blind vacation." Before we left, I had botox shots in my eyes to relax the muscles as I have done before, but they didn't work this time, and I could hardly open my eyes during the time we were there.
"They are now getting better.
"I have accepted the Lord's plans for me, and try not to be depressed. When I help with the bell ringing at Christmas, I tell those in charge: We may have Parkinson's but we can 'shake, rattle and roll." It is because of our Parkinson's that we are better bell ringers.
"I continue to try and help others, for I still think service to others is the way we pay for living here.
"I am thankful for Ginny, who has always remained strong, and my two sons; Jon and Andy, who are always ready to help out."
It was a group of optimistic, accepting, strong people who chose to share their stories. And they are not unique. Almost everyone in the Parkinson's Support Group continues their fight the best way they can.
They all feel that "we may have Parkinson's; but Parkinson's doesn't have us.
Their attitude can best be expressed through a poem written by Norma Semling just before attending the gathering:
"A new day gives us more than sunlight.
More than time
More than money.
Our hearts beat
Our voices can be heard.
Lift your head high
And reach out to the world!
We will all cross that finish line
Not all first, nor last, but
We will have done our best.
We are all victorious
Just for being
Who we are!"
Joyce Laabs can be reached at
Posted: Sunday, April 18, 2010
Article comment by:
Joyce Laabs had an excellent article on Parkinson's disease in the April 16 issue. Thank you to the individuals for their willingness to be interviewed. This horrible disease robs the person with Parkinson's and their family. We all need to keep up the good fight "to ease the burden, to find the cure."