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Sunday, July 13, 2014

Living with Parkinson's

Monday, April 9, 2007

(Photo)
Karla Hansen is pictured here next to her Angel Tree of Hope. Hansen is a Parkinson's Disease advocate who also suffers from the neurological disease. Photo by Mike Leckband.
There are approximately one million Americans who live with Parkinson's Disease, with 60,000 new cases diagnosed each year. Parkinson's Disease is a chronic, progressive neurological disorder that results from degeneration and premature death of dopamine-producing brain cells.

A neurochemical that controls the communication among brain cells, dopamine is responsible for control of motor function. Eighty percent of dopamine producing cells are lost before the motor symptoms of Parkinson's disease even appear.

April is "Parkinson's Awareness Month" and Karla Hansen is spreading awareness about the disease. Hansen is the State Coordinator for Iowa for the Parkinson's Action Network (PAN.) PAN serves as the voice of Parkinson's on numerous public policy issues affecting the Parkinson's community.

Hansen herself suffers from Parkinson's Disease. In 2002, Hansen's life was shattered. At age 47 Hansen was told by her neurologist that she had Young Onset Parkinson's Disease.

Young Onset Parkinson's Disease is when you are diagnosed with Parkinson's before the age of 55. Many individuals become physically disabled within two to ten years of being diagnosed.

Hansen, a Holstein native, was living in Denver, Colo., when she was diagnosed. A few months before she was diagnosed; "my primary doctor noticed my right hand shaking. He asked me how long my hand had been shaking and I told him about a year. He asked me if I thought that was normal and I said yes because my mom used to shake like that and my sisters hands shook. He told me to see a neurologist immediately because that shake was not normal. I went to a neurologist and had a complete body physical checking the rigidity and movement of all my limbs and body. I was then referred for a Magnetic Resonance Imaging (MRI) of the brain and a cat scan. That is when I was diagnosed with PD," said Hansen.

After living in Denver for 22 years, Hansen decided to return to Holstein were she grow up and went to school. "People have asked me why I moved back to Holstein. I tell them I have PD and they tell me they can't tell that I have it. That is because I take 21 pills a day to control my symptoms which include tremor, loss of balance, rigidity and loss of memory. I have my "off times and my on times." When I am having my "off times" I do not leave the house. The big city was causing me major stress and I would be driving home and have memory loss and not have any idea where I was. I chose to move back to Holstein because I have many long term friendships here and it is also much cheaper to live than many other places in the country. I have lots of support here and appreciate it more than people know" said Hansen.

Hansen also said that PD affects her daily life besides her tremors, balance issues, and memory problems, Hansen also has difficulty swallowing and it takes her twice as long to get dressed in the morning. "I wake up very stiff in the mornings I have a hard time turning in bed and also have a major sleeping disorder. It was found that three of my medications are causing me sleep problems," said Hansen.

Another major problem Hansen has been having with PD and sleeping problems is having horrible dreams when she sleeps which is caused by the medication. "So I fight going to sleep until I can't stay awake. Then my body will go to the other extreme when I can be awake anywhere from 36 to 60 hours without sleep" said Hansen.

It does not matter whether you are young or old; Parkinson's disease affects the part of the brain that controls your body's movement. Drugs used to control symptoms in PD, like Sinemet, Mirapex and Requip have to be increased over time because they lose their effectiveness. As your body builds up tolerance to the drugs, the dosage will have to be increased in order to control the same symptoms that were being controlled by the lower dose.

The cause of Parkinson's is unknown. However, scientists and researchers believe a combination of genetic and environmental factors my be involved. According to Hansen the top five states in the United States for Parkinson's Disease are Iowa, Nebraska, Minnesota, North Dakota and South Dakota.

At this time there is no cure for PD. There is a lot of research being done and Hansen participate in a lot of clinical research studies. Along with her work with lobbying Congress, Hansen wants to start up a support group in this area picking up Buena Visa, Cherokee and Ida Counties because the nearest support group is in Sioux City or Fort Dodge. "I attended a support group once in Denver and it was very helpful to me and I miss it so much. Anyone with PD and their caregiver may attend the support groups. Sometimes we have speakers such as dietitians, physical therapists and neurologists speak. Sometimes we show videos on PD and sometimes we just talk amongst each other about our daily frustrations and how to deal with them," said Hansen.

With the few people I have talked to in the area who have PD or who have or had a loved one in the area here, it seems to me like it is a "silent disease" and either people don't want to talk about it or there is not a lot of knowledge about the disease. I know for a fact that when you see your neurologist, they try to help you control your disease but don't give you a lot of information about PD and what resources and information is available for PD. There is a lot of durable medical equipment to help PD patients to help them stay at home and to help their 'freezing' when they walk but it's not readily available out here. I would like to have a 'loan' center for some PD medical equipment to help Parkinson's patients," said Hansen.

If anyone with PD or their caregiver is interested in being part of a support group they can contact Hansen at 712-368-2285 or if you have PD and just want to talk.

"I am willing to go to any service organization in the area and to talk about PD. I have an excellent film documentary titled 'Shaken-Journey Into the Mind of a Parkinson's Patient.' It is 30 minutes long and has been shown at many film festivals around the country," said Hansen.

Hansen also added, "I have two dreams. I hope in my lifetime I see a cure for PD and since I have no caregiver and there are other PD patients who are single out there without a caregiver, I would like to see a 'home' in Iowa strictly for PD patients. This way we would not have to go to a nursing home. The 'home' would have a general kitchen, living room area and dining room area, and then a few 'miniature apartments.' When a PD patient is having a 'on day' they can function on their own residence, but when they are having a 'off day' they can be in the general living area for help. We would all have the same disease and could help each other."



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