Managing the Cost of Chronic Illness

Mary Beth Skylis avatar

by Mary Beth Skylis |

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Chronic illness is expensive. It costs money, time, and peace of mind. Whether you’re sifting through your worries or counting the pennies in your pocket, illnesses affect all avenues of life.

Before the symptoms of a disease appear, one may go about daily life unencumbered by thoughts of self-preservation. But disease changes everything. 

According to the U.S. Centers for Disease Control and Prevention, 90 percent of the country’s annual healthcare spending — some $3.5 trillion — is related to chronic illnesses such as diabetes, Alzheimer’s disease, and others. 

With Parkinson’s disease, the same costs apply. While the return is generally worth the investment, Parkinson’s treatments are expensive. And people most often are hit with shocking bills at the same time they’re losing physical independence.

So how do you foot the bill? Where is the balance between finding the appropriate care and saving your pennies? What do you do when financial limitations find you?

Switching from full-time to part-time work

For many PD patients, one big question is: “Will I be able to keep my job as the disease progresses?” Everyone’s situation is different, and there’s no universal answer to this question. It depends on the job and how PD affects you. 

My dad worked as a Realtor for most of his adult life, and he remains invested in that world. He grew up in the same area where he worked, and many of his clients were friends first. So I doubt he’ll ever entirely give up his profession. But he has certainly chosen to change his relationship with work. 

One thing he noticed early on is that stress seems to drastically affect his PD symptoms. So adapting to the disease was never a debate. He just needed to determine how to move forward. His solution was to slow down and reduce the number of homes he sells. This means that his income has changed as well. 

Luckily, my mom is a worker bee. Even when she has a day off, she fills her time with projects and goals. She continues to work full-time and hold down the fort. But the financial side of PD has been fluid and will continue to change. Will my parents have to downsize houses again one day? Sell some assets? What happens when my mom realizes she’s in her 60s and can’t work as much anymore? 

Medical care and travel expenses

Medical care is a complicated subject. If you’re lucky enough to live in or near a city, the options allow you the privilege of choice. But what if you have to commute an hour each way and you’re not comfortable with your driving abilities anymore? What if you live in a remote area of the country and medical care is limited? The greatest cost in this situation seems to be time — your time and the time of a loved one.

Since undergoing deep brain stimulation, an expensive surgery, Dad continues to see his neurologist to tune the hardware. He always has a companion for these visits, which increase his quality of life. But he gives up time to travel and money for gas, and he probably pays something for each doctor visit. Sometimes he’ll also see an herbalist (the “witch doctor,” as he says) and a chiropractor. And even with insurance, he spends a lot of money on medication. 

My mom’s thoughts on the cost of Parkinson’s

My mom was kind enough to share some thoughts about the cost of Parkinson’s disease. She said that while they’re doing fine, it seems that “fun money” inevitably turns into bill money. Yet she remains positive. She, like my dad, continuously adapts to the changes that come with chronic illness. 

She ended a recent email on a positive note: “NONETHELESS, we are doing alright!”


Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.


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