Parkinsons Awareness Month

Lights on… Lights off – Living with Parkinson’s

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Written by Mary Beth Mohn, Vice President of Marketing, MatrixCare.

Imagine you have a dimmer switch installed in your home. Now imagine that the dimmer switch has a life of its own and your lighting goes from brightly lit to dim multiple times a day, with no rhyme or reason behind the fluctuation. Sometimes you’re in the middle of doing something with your hands full and there go the lights. Sometimes they go from full “on” to completely “off” with little to no warning.

Annoying, isn’t it?

That’s an analogy of what it’s like to live with Parkinson’s Disease. Parkinson’s Disease (PD) is a chronic, degenerative neurological disorder that affects one in 100 people over age 60. While the average age at onset is 60, people have been diagnosed as young as 18. Recent research indicates that at least one million people in the United States, and more than five million worldwide, have Parkinson’s disease. These numbers are expected to grow, as cases of Parkinson’s Disease have been increasing over the last 30 years. The list of well-known people with Parkinson’s includes Linda Ronstadt, Neil Diamond, Janet Reno and Michael J. Fox, who created the Michael J. Fox Foundation for Parkinson’s Research (a good source of information on the disease).

For those working in long-term care, it’s almost a given that you will encounter one or more residents who are living with Parkinson's. Click To Tweet

Parkinson’s disease is a disorder of the central nervous system that results from the loss of cells in various parts of the brain, including a region called the substantia nigra. The substantia nigra cells produce dopamine, a chemical messenger responsible for transmitting signals within the brain that allow for coordination of movement. Loss of dopamine causes neurons to fire without normal control, leaving patients less able to direct or control their movement. Parkinson’s disease is one of several diseases categorized by clinicians as movement disorders. (Think of dopamine as being the “electrical current” in the previous dimmer switch analogy and a person’s ability to move as the “light.”)

Most people with the disease take a carbidopa/levodopa medication which converts to dopamine and refer to the times when the medication is working as “on” and when it’s not, “off.” People with a more advanced case of the disease will sometimes benefit from surgery, such as deep brain stimulation (DBS), in which a neurostimulator (like a pacemaker for the brain) is implanted in the chest to stimulate specific areas in the brain that control movement.

I’m well acquainted with the disease because my husband was diagnosed with it in 2003, at 44 years old. This video clearly illustrates the difference in movement between someone who is “off” and then “on.” (His instructions were to go back and forth between the two pieces of tape as fast as possible. You can see that his whole demeanor changes when he is “on.”)

Since April is Parkinson’s Awareness Month, I wanted to share a little bit about this disease, which varies greatly from one individual to the next. (In fact, there’s a saying that “If you’ve met one person with Parkinson’s, then you’ve met one person with Parkinson’s.”) As a woman, I think of it like pregnancy: There are symptoms that are common to pregnancy—morning sickness, gaining weight, gestational diabetes, pre-eclampsia, a breech presentation—but not every pregnant woman will experience all of them. And so it is with Parkinson’s.

While the main symptom may be slowness and stiffness of movement, people with Parkinson’s may also experience tremor, rigidity, balance issues and non-motor symptoms like speech and swallowing difficulties, mood disorders and, in some individuals, cognitive impairment or dementia.

So how can you better support your residents with Parkinson’s Disease? The most important thing to understand is that the disease often dictates their schedule. Many people with Parkinson’s live not by the clock but by when their medication is working. When they are “on,” they will likely choose to be active and social. When they are “off,” even the most routine tasks may become challenging. It can also be more difficult to participate in conversation, so it’s likely they may feel less sociable during these times as a result. So, learning to spot the differences between on/off times is helpful. But when you notice your resident is “off” and struggling, ask before intervening. Although it may take them longer, a person with Parkinson’s can oftentimes still accomplish the task (albeit more slowly) and wants to retain their independence as long as possible.

Another commonly misunderstood thing about Parkinson’s is dyskinesia. These are uncontrolled, involuntary movements that can look like fidgeting, writhing or wriggling that happen during “on” times and are caused by long-term levodopa use. Although dyskinesia can be annoying or uncomfortable, many people with Parkinson’s still prefer it to being “off” altogether. These movements are different from the resting tremor that often accompanies Parkinson’s and is usually more visible when a person’s meds are “off.”

One of the more puzzling symptoms of Parkinson’s is known as freezing. This is very much how it sounds—the person just freezes up. They can be walking and become “stuck” and unable to move forward (even though they will look perfectly fine). When this has happened with my husband I had to take his hand and pull him along to get him moving again.

Finally, the best thing you can do to help your residents with Parkinson’s is to stay positive about their condition and focus on what they can do. With researchers learning more about the disease every day, there is plenty of reason to be hopeful for advances in identifying, managing and ultimately ending the disease.

Mary Beth Mohn

As Vice President of Marketing Communications & Events, Mary Beth Mohn is responsible for building the MatrixCare brand and driving differentiation in the long-term, post-acute care industry. She is responsible for developing a marketing strategy geared towards growth and market leadership and leading a team of professionals focused on different market segments and geographies. She is also responsible for identifying and assessing new market, product, and technology opportunities and ensuring marketing strategy and resources are in place to leverage those opportunities. Ms. Mohn joined MatrixCare in 2017, bringing with her more than 20 years of marketing experience, most recently leading the global strategic marketing function for Pearson VUE, a division of Pearson, PLC. She graduated magna cum laude with a BA degree in Communications and also holds an MBA, both from Augsburg University in Minneapolis. She has presented at a number of conferences on topics including stakeholder communications, social media and marketing.