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A Day in the Life of a Parkinsonís Disease Sufferer

By Alison Palkhivala

Imagine waking up every morning stiff and sore after a poor night’s sleep, not knowing if this will be a good or a bad day. You’re eager to take the medication that allows the stiffness to diminish and your limbs to function, but is it too soon? Will they last long enough to get through the morning with your grandchild or that lunchtime meeting? And then everything else comes flooding in: your trip to New York City next week, a relative in the hospital, an upcoming holiday. It might be that none of those things require your immediate attention, but they take up mental space, and mental space is in short supply these days.

You give yourself a good couple of hours to get dressed, being sure to choose a pullover shirt, elasticized pants, and loafers. It’s been months since you’ve been able to manage buttons or laces, but you haven’t been able to face culling your wardrobe, so you must choose carefully. Brushing your teeth and hair, washing your face, and putting on makeup or jewelry all take an inordinate amount of time, but you’re grateful you can still do it, for now.

April is Parkinson’s disease awareness month, and I’ve just described what could be a typical morning for anyone living with this condition. It’s the kind of morning often faced by Karen Smith, a member of the Parkinson’s Disease Foundation’s People with Parkinson’s Advisory Council and a Research Advocate. She faced early-onset Parkinson’s disease, receiving her diagnosis at the age of 42. Most people are diagnosed with the condition around age 60, although it does occur much earlier, with Michael J. Fox being a famous example.

“I wish people knew that I needed help,” says Smith, now 55. “I’m very proud; I don’t want to ask for help. But that doesn’t mean that I don’t need help.” Smith puts up a good front. She keeps herself busy with patient advocacy work and family responsibilities that include hosting dinners and caring for her grandchildren, but she did have to give up her job at a pharmaceutical company because she could no longer manage the multitasking it required. That was a blow. “Parkinson’s disease has taken away an integral part of myself, and that’s what’s most difficult for me. I can live with a little tremor or a little gait problems. But cognition is your center.”

What is Parkinson’s disease?

Parkinson’s disease is largely thought of as a condition of affecting motor control. James Beck, PhD, vice president of scientific affairs for the Parkinson’s Disease Foundation (PDF), says that while every case is different, the four cardinal signs of the disease are tremor, muscle rigidity, bradykinesia or akinesia (slowed or lack of movement), and problems with walking and balance. These symptoms occur as cells in a part of the brain known as the substantia nigra begin to die off, for reasons that remain unknown. These cells produce an important chemical neurotransmitter known as dopamine. Without dopamine, the brain is unable to control muscle movement.

But dopamine is so much more than that. You may have heard it referred to as the “happiness” neurotransmitter, so it’s no surprise that two of the non-motor symptoms of Parkinson’s disease are depression and apathy. Add to that pain from rigid muscles, blood pressure instability, drooling, sweating, constipation, impaired cognition, and absolutely crushing fatigue, and you’ve got yourself a disease that affects just about every facet of life.

“A person with mid-stage Parkinson’s disease walking around may look like they are drunk,” says Dr. Beck. “They commonly have slurred speech, and swallowing is another problem, which can contribute to drooling. This constellation of motor effects looks like drunkenness, but their minds are clear.”

Treatment for Parkinson’s

Fortunately, there are treatments for Parkinson’s disease, but they only help manage the motor symptoms, and only for a short period of time. You have to keep taking more medication more often just to be able to move, and as Smith puts it, “the side effects can be as bad as the disease.” The worst of this is probably a condition known as dyskinesia, which refers to uncontrollable, writhing muscle movements. You can pretty much expect to develop dyskinesia if you are taking medication for Parkinson’s disease. An unlucky minority will develop other troublesome side effects, including psychosis or impulse-control issues (imagine finding yourself suddenly gambling or eating uncontrollably). The alternative? Rigidity. Immobility.

Brain stimulation is providing some relief for individuals with Parkinson’s disease. It requires brain surgery, so it’s not for everyone. Smith receives brain stimulation on one side of her brain and found it so effective that she has been able to cut her medication use in half. She is looking forward to receiving the treatment on the other side of her brain in the upcoming months.

But even brain stimulation has its limitations. It’s a treatment for the motor symptoms, not a cure, and it won’t stop the disease from progressing. It does not help the non-motor symptoms of Parkinson’s, which can easily be as debilitating. But there is some good news. Dr. Beck has high hopes for several new treatments for Parkinson’s disease that are in development or expected to be approved soon. These include drugs that may slow the progression of the condition, and a new drug delivery system for currently-used medication that may help minimize side effects.

What to do in the meantime? Smith recommends “getting out of your box and focusing on something external.” She knows how hard this is. She fights depression, apathy, and anxiety every day. So far, she is winning. “I was a productive member of society and then suddenly I was home with no external source of fulfillment, no one patting me on the back. The PDF gave me an outlet for my knowledge and passion.”

Getting Help

If you or someone you care about has Parkinson’s disease and needs help, call the PDF’s HelpLine at (800) 457-6676. They can direct you to specialists and support groups. The PDF also offers excellent educational materials about Parkinson’s disease, including brochures, booklets, videos, DVDs, and even free online seminars. You can find these at: http://www.pdf.org/en/newsletters_pubs

Source Date: Apr 28 2014
Source Publication: Good Days from Chronic Disease Fund (CDF) blog
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