Parkinson's Disease: The Human Aspect

PARKINSON’S DISEASE The Human Aspect

by Tom Huerter

-table of contents

in the issue...

the science of parkinson’s

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Parkinson’s: from the outside looking in

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Feature: mary landen

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Parkinson’s Disease |ˈ'pärkinsəenz| noun a progressive disease of the nervous system marked by tremor, muscular rigidity, and slow, imprecise movement, chiefly affecting middleaged and elderly people. It is associated with degeneration of the basal ganglia of the brain and a deficiency of the neurotransmitter dopamine.

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-The Science of Parkinson’s

The Science of Parkinson’s from a medical point of view

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arkinson’s Disease is not easy to understand. According to the new Oxford American Dictionary, Parkinson’s Disease is “a progressive disease of the nervous system marked by tremor, muscular rigidity, and slow, imprecise movement, chiefly affecting middle-aged and elderly people.”

In reality, Parkinson’s is not that simple.

It’s not like the common cold where you get a sore throat, followed by congestion and coughing. Parkinson’s has base symptoms (the tremors and rigidity) and an explanation, a lack of dopamine. The way that Parkinson’s affects each patient, however, is a total caseby-case basis. You never know how and in what ways that it will affect the patient. My grandma who has Parkinson’s, for example, has the rigidity as well as serious problems with word finding and formulating sentences.

To get a more in depth idea about Parkinson’s Disease, I interviewed my mother, Dr. Shirley Huerter, because of her personal and professional experience. “[Parkinson’s Disease] is a chemical imbalance in the brain that causes a number of neurological, psychiatric, and motor disorders,” Huerter said.

My grandmother with Parkinson’s is my

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maternal grandmother, and I wanted to know if the disease had any genetic factors.

“There is some evidence that genetic factors may play a role, especially in young people,” Huerter said.

In the article “Research on the Premotor Symptoms of Parkinson’s Disease: Clinical and Etiological Implications,” they spoke of how there is little information as to what casues Parkinson’s Disease, and how there is some evidence that environemntal factors may cause.

With my grandma not being diagnosed until later in life, I wasn’t too concerned.

Over the years, however, my grandma’s symptoms have done nothing but grow. She experiences almost all the classical symptoms of Parkinson’s.

“My mom gets stiff as a board without her medicine,” Huerter said.

One of my grandma’s biggest symptoms of Parkinson’s is her difficulty speaking.

However, this is an example of how Parkinson’s can vary with everyone who has it.

“The difficulty speaking [talking to me], like you see with your grandmother, is not a classic part of it [Parkinson’s Disease].”

According to the Nebraska Parkinson’s

Foundation, approximately one millions Americans have Parkinson’s Disease, and as many as 60,000 Americans are diagnosed each year. However, there is no test to determine whether you have the disease; it’s all through symptom diagnosis. “[Parkinson’s Disease is diagnosed] through a clinical set of symptoms,” Huerter said.

“There’s no blood test for Parkinson’s or brain scan for Parkinson’s. It’s the combination of a lack of facial expression, rigidity, moving slowly, tremors.”

Even with the different complexities of Parkinson’s disease, there still are treatments that can help.

“There are medicines to help with the movement disorder, to make them less rigid, to help with the dementia and anxiety, like your grandma has,” Huerter said.

There are simple definitions and answers to our questions that may falsely make us believe that when know what Parkinson’s Disease is. However, no one really knows what Parkinson’s Disease is until they have known someone who has it. It is different in a variety of ways for every person who has it. For my grandma, it’s the classical symptoms compounded by difficulty speaking, mild dementia, and extreme anxiety.

My grandma, however, is lucky. She has five children and 18 grandchildren whom would all do anything to help her. Many people, unfortunately, are not so lucky.

Parkinson’s is complex and can be hard to handle, but when you love someone you have to walk through the hard times hand in hand.

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-opinion: Parkinson’s

Parkinson’s From the outside LOOKING IN 06

It’s hard for most people to understand when my grandma trys to talk to them. Her words are mumbled and mixed. It takes a keen understanding to figure out what she is saying, and often that’s not even enough. It usually ends up being a game of 20 questions to figure out what’s going on.

Over the years, friends have dwindled. It can be so difficult to talk to her that I can’t really blame them. It has shrunk down to a couple close friends, her sister, and her children. In “Supporting People With Parkinson’s Later in Life,” the author talks about how important it is to have a close support group to live with Parkinson’s.

The part of her disease that I find most interesting is the ways that it has affected her. Mentally, it causes turmoil. She can never really find the right words to say and she often become anxious and worked up about very small things. We find ourselves having to come up with things to keep her mind from worrying. However, she is always picking up on things that we don’t realize. It’s very difficult to tell what is going on in that brain of hers.

Besides the mental affects, there are also many physical affects of the disease. Parkinson’s causes her to be extremely rigid, and sometimes when her medicine is off, it can be hard to get her joints to bend at all. There is also the tremors that can make it almost impossible for her to get food into her mouth. And, as with most Parkinson’s patients, she has lost the ability to show much facial expression.

However, not everything is affected by her disease. She still eats well and has never had problems with keeping on weight.

A lot of the time, her disease can make me mad and angry. Not at her, but at the disease itself. I can feel like I was robbed of the chance to get to know my grandma, and it took away the chance for her to really get to know me. The most painful part is knowing that she is still in there. She’s trying to tell us all a lifetime of stories and advice, but she just can’t get the words out.

It is frustrating enough for all of us, but it is hard for me to even imagine how frustrating it must be for her. It can be easy to get annoyed by the fact that she cant get things out or that you have to spend all day playing 20 questions to figure out what she is saying, but that annoyance is incomparable to what she must be feeling.

I love my grandma. That is never something I have had a twinge of doubt about my entire life. However, so much of her has been taken away by Parkinson’s Disease. Parkinson’s Disease is not something

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-feature: Mary Landen

Mary Landen The renaissance woman I remember walking into the backyard of my grandparents home. I pushed open the wrought iron door onto the brick patio, and there she was. It all seemed too perfect, as if I have glamourized the memory over the years. This is the first memory I have of my grandmother. She turned around as the bright and warm sun washed over her. Her hair was voluminous and perfect, as always. She wore a white button up shirt with a bright red sweater draped over her shoulders, along with her signature black slacks and black leather flats.

She was the picture of perfection.

As a child, I got to go over to my grandparents house one day a week after school and hang out with my grandma. I remember driving all around town with her, running errands, shopping for groceries.

But as time moved on, everything changed. When I was little, I was the one trying to keep up with her, but it quickly became me slowing down for her. She needed a cane, and then a walker, and eventually a wheelchair.

Stairs were replaced with ramps, and sports cars were traded in for wheelchair vans.

Over time, grandma started to sound different. She would say the wrong word, or wouldn’t be able to think of the right word. She knew exactly what she wanted to say, and she just couldn’t get it out. Decades of knowledge and stories to tell that couldn’t be told. Her expressions slowly disappeared and sentences became a jumbled combination of noises.

Now, over a decade later, I sit next to her at the same table she has sat at for my entire life. She looks to me to and says something. A question, but I have no idea what

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she is saying. I don’t know if it’s something to laugh about or something to cry about. I simply don’t know. I am, as she would say, dumbfounded. This is Mary Landen, 84 years old, Parkinson’s patient.

In the book “Understanding Parkinson’s Disease: A Personal And Professional View,” I looked over the symptoms of Parkinson’s Disease. I found out that it is a progressive disease, and it shows in my grandmother. Over the years, more and more symptoms have set in.

Mary is the daughter of Mary and Paul Shirley and was born at 60th and Dodge in Omaha in 1930.

She lived a life that people only talk about. She went to school, she worked, she traveled the globe, she made a family, and she left her mark on everything she did. She was fiercely independent yet served her family in everyway she could all at the same time.

The most important thing my grandma did was help to create a truly amazing family. One husband, five children, and 18 grandchildren. Last Christmas, every single family member, with the exception of my late grandfather, was together for the holidays.

Even though her disease holds her back, she is still the glue that holds this family together.

Grandma Mary may have Parkinson’s, but

that does not and will not define her. She started worrying about getting Christmas presents in June.

She would be traumatized if she found out that a child or grandchild’s birthday had passed and she hadn’t gotten them a present.

It may be hard for her to get her words out and express herself, but she is still in there. If you ask her about her past, she can tell you whatever you want to know, in detail. It’s almost as if, for that moment, her Parkinson’s disappears. She can tell lengthy stories about how she rode horses through Elmwood Park as a child or about her world travels.

One of the most important things that my grandparents did was write a book. They compiled the stories of their lives together for their grandchildren to have forever. It gives me a chance to bring things up I know she will be able to talk about.

It is my way of getting to know my grandma from before Parkinson’s took that away from her.

My grandmother is my biggest role model. I have never heard a bad word uttered about the infallible Mary Landen. In her hay day, there is nothing that could stop her. As far as the game of life goes, Mary Landen won, despite her disease.

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-sources

Sources Photos PG 1 and 12 Zorro2212. Lagiewniki Forrest in Autumn. Digital image.

Wikimedia. Wikipedia, 10 Dec. 2011. Web. 29 Jan. 2015.

PG 3 Bennett, Alosh. Image of Pakhal Lake. Digital image. Wikimedia. Wikipedia, 24 Jan. 2009. Web. 29 Jan. 2015.

PG 4 and 5 Hochauer, Walter. Pills. Digital image. Wikimedia. Wikipedia, 1 Apr. 2009. Web. 29 Jan. 2015.

PG 6 and 7 Y.ganden. Sagano Bamboo Forest. Digital image. Flickr.

N.p., 23 Sept. 2013. Web. 29 Jan. 2015.

All other photos were scanned in family photographs.

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People Huerter, Shirley, Dr., Novermber 5, 2014.

Landen, Mary, November 3, 2014

Database Chen, Honglei, et al. “Research on the premotor symptoms of Parkinson’s disease: clinical and etiological implications.” Environmental Health Perspectives 121.11-12 (2013): 1245.

Science In Context. Web. 3 Oct. 2014.

Hayes, Nicky, and Suma Surendranath. “Supporting People With Parkinson’S In Later Life.”

Nursing Older People 26.9 (2014): 29-38. Academic Search Elite. Web. 7 Nov. 2014.

Rosenbaum, Richard B. Understanding Parkinson’s Disease : A Personal And Professional View. Westport, Conn: Praeger, 2006. eBook Collection (EBSCOhost). Web. 7 Nov. 2014. (used to create nterview questions) Reddy, Prashanth, et al. “Perceptions Of Symptoms And Expectations Of Advanced Therapy For Parkinson’s Disease: Preliminary Report Of A Patient-Reported Outcome Tool For Advanced Parkinson’s Disease (PRO-APD).” Health & Quality Of Life Outcomes 12.1 (2014): 1-19. Academic Search Elite. Web. 7 Nov. 2014.

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