Darrel "Tucker" Wavra

Body tremor, slow movement, low speech volume… these are common symptoms of an individual with Parkinson’s Disease (PD). A motor disease, it leads to gradual decline over time due to the death of nerve and brain cells. Common symptoms include tremor (shaking) of the hands, legs, face and jaw, rigid (stiff) arms or trunk, slow movements, impaired balance and coordination.

According to The Parkinson’s Disease Foundation as many as one million Americans have Parkinson’s Disease. Darrel “Tucker” Wavra of Valley City, ND is one of the many individuals who is currently living with PD. Tucker and his wife, Marion “Leah,” share the story of their journey.

In 2010, Leah noticed her husband’s walk seemed a little off. “We went to our doctor first, and they couldn’t see it. We went back and forth for quite a while, and finally they said we could go to a Parkinson’s doctor in Fargo. In 2013, she [the doctor] diagnosed him with Parkinsonism,” says Leah. Parkinsonism is the generic term used to describe neurological issues that cause slow movements and rigidity.

“I didn’t feel very good about it,” states Tucker in response to his diagnosis. “I remember what he looked like, just quiet and sitting there…denial,” Leah adds.

While the cause of PD is unclear, there are a variety of treatments to help with symptoms including: medicine, deep brain stimulation, physical therapy, occupational therapy and speech therapy.

In August of 2015, their doctor recommended that Tucker also begin physical therapy (PT) and occupational therapy (OT). In a PT treatment, patients may work on increasing their strength, endurance and balance, all of which can be negatively affected by PD. An OT session may include providing strategies and equipment that may be needed to complete daily tasks, such as dressing, cooking or hobbies that have become difficult due to PD.

Tucker completed both PT and OT for four days a week for four week. “I don’t know where we would be if we hadn’t done that,” Leach shares. “I’ve worked hard,” smiles Tucker, who continues to complete daily speech and physical therapy exercise. Along with therapy and medical intervention, Tucker and Leah attend a support group in Fargo. “It gives me support, just talking to other people and listening to others,” Leah States

Tucker’s treatment plan, led him to speech therapy (ST) at Jamestown Regional Medical Center “The goals for treatment are to increase loudness of the voice, as well as, strategies and exercises to improve swallowing and prevent aspiration,” says Becca Gussiaas, JRMC Speech-Language Pathologist.

They have found their experience at JRMC to be overwhelmingly positive. “We didn’t know what to do or where to go; it was through our doctor that we came to JRMC. They’re so friendly here, it’s welcoming and relaxed.”

Marv Bossart

It started innocently enough. Just a slight tremor in the pinky finger of his right hand. Nothing serious. Just annoying. “I better get this damn thing looked at,” he told his family, relaxing in his sunroom during his first year of retirement. The tremor wasn’t innocent. Instead, it signaled the beginning of Marv Bossart’s 12-year battle with Parkinson’s disease.

Marv Bossart anchored the evening news at WDAY Television in Fargo for 42 years and became the most familiar voice in the history of the Red River Valley broadcast region. He also taught a generation of news reporters as a writing and introductory journalism instructor at Minnesota State University Moorhead for 37 Years.

In January of 2000 Marv had open heart surgery to repair 6 arteries in his heart, this after managing Angina Pectoris since age 34. Not long after, he retired as WDAY news anchor and this is when he started noticing his pinky tremor. Marv was diagnosed with Parkinson’s disease in July of 2001, but continued to teach students at MSUM and record commercials for Bell State Bank & Trust in Fargo.

Marv stayed active for many years after his diagnosis, walking daily as he had always done, scouring recipe books for new dishes he would cook on the weekends and spending time with his wife and family at their family lake home in the summer. He made his illness public to endorse the importance of exercise, physical and speech therapy and to raise awareness of the disease, through a news story that his co-anchor, Kirsten Kealy did on WDAY. In 2008, Marv retired from MSUM as it became difficult to teach, write and stay focused.

When Marv began his journey into Parkinson’s disease, his daughter remembered, he usually took a stoic stance, saying “It is what it is.” Later, as the disease progressed, he expressed a different attitude: “I hate this damn disease.”

Things took a turn for the worst about 9 years after his diagnosis when the family started noticing some cognitive changes in Marv. The family tried medications to manage some of the symptoms he was having but it was becoming increasingly difficult to manage him at home so his family moved him to Edgewood Vista. This was a very difficult transition for Marv and his wife Betty as they had a very strong marriage for over 50 years, but Betty came to visit every single day and helped care for Marv. He loved Edgewood and the caregivers there who took care of him along with Marv’s wife and four daughters. He oftentimes made the residents laugh by telling his many stories and his comical wit usually had the staff laughing too.

On April 23rd, 2013, his daughter’s 54th birthday, Marv passed away from complications of the disease. To honor his legacy and memory, his family started the Marv Bossart Foundation for Parkinson’s Support to help others living in our area who have Parkinson’s disease and their caregivers.

Victoria Wagner

Once upon a time in a land not too far away, three little boys quietly waited for one of the boys' mothers to come outside.  You see it was laundry day and Alex's mother would be coming out of the house with some laundry to hang on the clothesline. She thought nothing of it when she heard the giggling behind her just thought it was her son being funny. Until all of a sudden she heard the chants of three little boys and she was being blasted from three directions by Super Soaker squirt guns. She screamed and ran for the house. Before she could get to the house, she was cut off by her son and one of his friends.  The three of them stood, two boys giggling and one mother begging when suddenly the woman made a break for the front of the house. The three boys took off in the opposite direction to cut her off. When the boys rounded the corner of the house they stopped dead in their tracks… there stood the woman with a smile on her face and the garden hose in her hand.

 I remember those days well. I may be older and a little shaky but I still have my sense of humor. My journey with Parkinson’s began when I was just 45 years old. Out of the blue one morning I woke up and I just didn’t feel the same. One side felt weaker, not a lot, but enough where I noticed it. Then I noticed a slight tremor in my leg. Not one to mess around with one’s health especially since I was a single mother, I made an appointment to see a neurologist. The appointment consisted of various tests none of which were blood related. It took him a total of 10 minutes and he told me I had restless leg syndrome. He gave me some medication and sent me on my way. One week later I called the doctor and said, “Nothing has changed”. He prescribed another medication and told me to take that as well as the first medication.

After just 2 days, I was at work, feeling dizzy, disoriented, and out of sorts. My speech was garbled. A coworker walked into my office at the same time I was reaching for my purse. Looking up I asked her to take me to the hospital because I feared I was over medicated. The next week I was out looking for a new neurologist. I found a gem of a man, someone who came highly recommended. One important thing was that he listened to me. I told him the symptoms and I told him the diagnosis given to me by the previous neurologist. He then examined me using the same tools that an officer would use to evaluate a drunken driver. A blood draw was not needed.

When he confirmed my suspicion that I had Parkinson’s, I wasn’t surprised. He asked, “How does it make you feel?”  To which my reply was, “I can’t give it back can I?”  I then asked my doctor if he would mind if I got a second opinion.  “By all means.  Where do you want to go?”  I told him that I wanted to go to Mayo, but I knew it would take a while to get in there. Knowing that I was anxious my doctor managed to get me into Mayo within 2 days.  Once again the examination was very similar to my neurologist in St Cloud. After the exam the doctor shared with me that at first glance he couldn’t believe I had Parkinson’s. I was passing the test and everything looked good until the math quiz. Take 7 from 100 and keep going backwards.  Augh! Math had never been my strong suit. I started shaking like crazy. I like to call it doing the ‘funky chicken’.

 After everyone agreed with my diagnosis it was time to set up a plan of action. Before leaving Mayo I met with one of their research teams where I again answered questions and underwent the same mobility test, but this time there was blood drawn. I then was placed on the National Registry. This registry is used to communicate any findings on a cure for Parkinson’s as well as to keep in touch with those people that are registered and monitor their progress with Parkinson’s. Everyone in my family was evaluated to rule out Parkinson’s, with the exception of my brother, who was not yet 40 years old.  A couple years later, when my brother turned 40 years old, Mayo contacted him and made arrangements to have him flown in from Anchorage, Alaska to undergo an exam. The final outcome after all the exams, was that out of a family of 8 only one person had Parkinson’s.  

Knowing that my life would need changing, I decided to put together my bucket list. Just because I had Parkinson’s didn’t mean I had to stop living. With the urging of a friend I took up the art of trap shooting. That sport had me hooked from day one and I still do it today. I’ve won a couple of tournaments too.  I’ve always wanted to try archery and found out very quickly that this was a sport I enjoyed and still enjoy today. I found that the only thing holding me back was me. If I was to say I couldn't do something because of Parkinson’s, that would be very untrue. In fact, I've been more curious about things that I normally would be scared to try since my diagnosis.  

I had put off seeing a neurologist here in Fargo because I didn’t want to let go of my neurologist in Saint Cloud for fear of not finding a suitable replacement in Fargo. I was living in Moorhead and driving to St Cloud once a month to see my neurologist. Then came the day when my neurologist informed me he was going to be retiring.  Nothing's worse than having to switch doctors. You have to re-educate and gain a mutual understanding, as well as a mutual respect and trust. So I hit the pavement again and found a neurologist in Fargo. Then my nightmare began.

The doctor I saw said it is looked like I didn’t even have Parkinson’s. I said to give the medication credit for that. Just the same, the doctor informed me that he was taking me off of all of my meds to get a baseline. Days after I’d been taken off my medication, I had lost control of the normal functioning of my body. I needed help feeding myself, bathing, going to the restroom and so much more. One time when I was alone, I needed to go to the restroom and I literally had to crawl on my stomach to get there. It was an awful time, until finally I panicked and called an ambulance. I wasn’t feeling safe anymore. I couldn’t cook for myself…I couldn’t feed myself…it was frustrating and scary.

Normally, you would expect that your doctor would see you because of the difficulties you were having but this doctor held off and said to wait for my appointment which was another 4 weeks away. I was in the hospital for 2 days and even then, one of the doctors that saw me said I didn’t have Parkinson’s. Since I couldn’t walk they couldn’t send me home.  And since I didn’t have a ‘disease’ I was placed on the fifth floor of Sanford with the diagnosis of conversion disorder.  For the next month I was subjected to counselors and psychiatrists trying to convince me that I did not have Parkinson’s and it was all in my head. After a month, I still could not be transferred home so I was put in a nursing home.

Nobody was convincing me that I didn’t have Parkinson’s. I just laid there. It was awful. My family continued to hold conversations with the doctor stating that he should examine me again. He finally relented in July and when I was rolled into the room in a wheelchair his face went white. He knew right then and there that I had Parkinson’s. An examination did not take place as he said he was referring me to another specialist, Dr. Harlow - and within 5 days, gave me verification, hands down that I had Parkinson’s. The day after I saw her she had given me new meds. I was amazed… I had JUST taken them and I could walk.

 Now the task was to find a place for me to live. On October 1st, 2015 I was sprung from the nursing home and now I am back to independent living, buying my own groceries, taking care of myself, driving my car, and I even have a job again. In other words, I have my life back. To sum it all up, sure, there are good doctors and not so good doctors out there. But you need to be your own advocate and not give up. As they say they’re physicians not magicians. At the time, I started doctoring with Dr. Harlow Sanford had just purchased a DAT scanner. This machine shows a color picture of the brain that shows the different chemical levels in the brain. It helps the diagnosis for Parkinson’s to be that much more accurate. Parkinson’s should never stop you from doing something. It just might take you a little longer.  And those water fights I had with my son? We still have them. Only this time I’m using the sprayer at the kitchen sink.

Jerome Stein

I was estimated to have had Parkinson’s for about 15 years, before I was diagnosed. I worked for an Electrical Power Co when I noticed some changes, at times worse than others. I would go up the stairs and catch my toes on the edge of step, this seemed to be the thing I noticed first. Then I noticed I was having some balance problems, I didn’t say anything to anyone at this time. I felt uneasy, depressed at times and my balance was becoming a bigger problem.  It was becoming evident I had something going on with my walking, not as clear of a mind and my memory.  When I would talk under pressure or when I was more depressed it would cause a lower voice and harder to get words out. Writing would be ok one day and another day it was a mess, I could not understand what was going on.

DL Fishing - Stein - 9-21-14 - 4.jpg

I retired in 2000, my problem kept getting worse, and my confidence in myself was at a low point.  I was still trying to golf and do my daily activities but was becoming evident something was very wrong.   I talked to many Doctors, they had no answer. I got so I would get out of bed and get to my chair, and back to bed. I went to Emergency Room twice in Fargo, was told I had Fibromyalgia. I was also told that I should be put in a Nursing Home, at this point I was shaking out of control. My family got me an appointment with the University Hospital Minneapolis MN, I had several Doctors see me, the very best. They could not figure out what was going on, I had a few misdiagnoses. 

We went to Minneapolis to see if they could figure something out there.  While we were there my wife had a heart attack in our hotel room, our youngest daughter was with in the same room. She called 911, I tried to give CPR and she came to help me. The ambulance came and we went to the Hennepin Medical Center, there were several people working on her with a flat line on the heart monitor. They told us they could not do anything for her, 5 to 10 Minutes later they came back and said they were taking her to her room.  My wife went from being a caregiver to me, to me being her caregiver.  We were in Minneapolis for several weeks till she was well enough to travel.  She had sustained an Anoxic Brain injury from the lack of oxygen. I had my wife home with me for a while after her illness, then she went to the Nursing Home. 

 While in Minneapolis I got in to see a Doctor who took the time and cared.  He told me Jerome you will not leave me without knowing what your problem is. He did figure it out, and ended up being Parkinsonism with Essential Tremors. I started Doctoring in Fargo with Doctor Harlow, then went to see Sarah Matcha CNP. After trying different medications Sarah got it right. I consider Sarah to be a very dear friend, and my savior.

I am doing well, I must take medication on time, every time. In the winter I do my exercise, walk on the tread mill and go to the grandkids basketball games.  In the summer I go hunting, fishing, boating trips, Golf, garden and stay busy.  Exercise is not a problem in the summer. I do work on my balance trying to stand on one leg and then the other it seems to help me some.  

It was a lot of work getting my pills organized every week, I went thru Thrifty White and they made it so easy.  They package the pills for me so I just open the package for the time of day I have to take meds and they are prepared. I use my cell phone alarm to notify me when my pills are due for me to take, then I am sure to get them on time every time.

Clarice passed away, March 23rd, 2015. Our time with her from 2008-2015 was a very hard for me and my family, but we are so thankful to have had it.  We miss her very much.

I live alone in my house and have learned to live with Parkinson’s.  Every day is different, it’s a balance of getting enough rest, exercise and staying positive.

David Holt

I doctored for over 6 months trying to find out why my right arm and hand didn’t move when I walked.  My right hand couldn’t move back and forth when I washed my hair as fast as my left hand could either.  I also was having some trouble with my right toe dragging when I walked.  I was referred to the Mayo Clinic.  On December 30, 2009 I had my appointment at the Mayo Clinic and within an hour of going into my appointment the Dr. told me I had Parkinson’s disease and of all the neurological diseases you can get Parkinson’s was the best, because you do not die from Parkinson’s disease.  This statement will forever stay in my mind, “You do not die from Parkinson’s disease."    She then told us to go home and do as much research you can on your computer about the disease and within 6 months you should see a Neurologist. 

I had an Aunt who had Parkinson’s for over thirty years.  She was always positive about living with the disease and lived a very active life.  She encouraged me to have a good diet and exercise.   This is also what our research told us about the disease.

I started seeing Dr. Tanya Harlow and now see Sarah Matcha, Nurse Practitioner.  She oversees my medication and emphasized how important it was to take them every day and on time.  I was also encouraged to take the Big and Loud program which I did and I feel it has helped me tremendously.  I have been doing a weekly big class and also I do it at home.  My goal is to do it daily.  I have also been going to Dr. Ala Smith who is a Neurological Chiropractor for the past two years.  She specializes in training the brain to use more of its available motor functions.  I also do exercises she prescribes on a daily basis.  This all takes dedication, but, I have experienced positive results and have regained a lot of my functions that I had lost and now feel like me again.

I am 66 years old.  I am a crop and livestock farmer and continue to operate it full time.  Staying active is key.  I exercise, take my meds and approach life with a positive attitude.  This formula has helped me cope and live with Parkinson’s disease.  I also have a very supportive wife who reminds me to stand up straight and pick up my feet when I walk.  Together, we have a goal of living life to its fullest.   

Dr. Anthony B Gustafson

Dr. Anthony B. Gustafson began his journey in healing after attending Case Western University Medical School and completing his internal medicine residency in the Harvard Medical Service at Boston City Hospital.

In an effort to provide better care to those serving our country, he joined the Navy Medical Corps on July 1, 1973 as an officer. While there, Tony piloted innovative research to aid in the health and welfare of the troops. After his service he continued as an advocate of healthcare, including becoming a well-respected endocrinologist at the Fargo Veterans Administration Hospital. Tony was known as a dedicated and passionate teacher to his many residents from the University of North Dakota Medical School.

Tony was diagnosed with Parkinson’s in 1990. During the nearly 30 years living with the disease, he sought out cutting-edge treatments through medication, physical therapy, and other therapeutic regimens, including volunteering to partake in ground-breaking deep brain stimulation surgery at University Hospital of Cleveland.

Over the years, as the disease progressed and he required more assistance with daily activities, it never stopped him from the pursuit of his interests. Tony believed in the strength of hope and continually searched for new ways to heighten awareness of Parkinson’s. He saw it not as a diagnosis, but just another obstacle in life – one he intended on conquering.

The Liftware spoon was purchased as a father’s day gift in the anticipation it would assist his ability to eat independently and enhance the overall enjoyment of his daily fare. Having passed away only a few days prior, he was never able to use it.

On behalf of Tony’s legacy of honor, service, and advocacy, the Gustafson family would like to donate the utensil to the Midwest Parkinson’s Initiative. His life was illustrated by his devotion to heal – notably the inspiration he bestowed upon others to never give up hope – even if it’s a spoonful at a time.

Written by Anastasia Gustafson