30 Days of Parkinson’s: Well-laid Plans for Retirement Disrupted

Photo courtesy of Diane Skylis

Day 12 of 30

This is Diane Skylis’ story:

Early on, I heard it said that Parkinson’s is an “expensive” disease. Frequent doctor bills are costly, so I thought any disease would be expensive. Why did that statement strike a nerve? Now, several years later, the picture becomes clearer.

My spouse, Jim, has Parkinson’s and an abbreviated digestive track. Traditional medical treatment was not helping him. So, we turned to DBS, or deep brain stimulation, surgery. It has taken months to regulate the medicine and the electrical impulses. Since Parkinson’s is degenerative, years of adjustments are ahead of us. With regular appointments, never-ending payments will be due. 

Jim worked in real estate, managing up to 20 transactions simultaneously in his prime. Now, we are happy when he can manage just a few since everything has to be timed according to “on and off” periods. This all equates to a loss of income. 

We basically lost the main breadwinner’s income. I tried to make up for the loss by working a nine to five, teaching piano in the evenings after work, working at a local conservatory on Saturday, and working a church job on Sunday. I worked the equivalent of three jobs, but my increased wage was hardly worth the cost of my mental health. After doing this for two years, I made the hard choice to give up the thing I loved most, my conservatory gig. 

I try to keep my work hours to 40 to 45 because I still hold down the fort with meals and cleaning. It is my hope that I can work outside the home for an additional 2.5 years, when I will reach my full retirement age. As Parkinson’s causes physical decline, I am hoping I can beat the clock to pay off the big bills until I have to meet more important, pressing needs.

At some point, I will have to make the choice of becoming a full-time caregiver. While Parkinson’s doesn’t directly kill a person, it is very disruptive. Lots of bills and lost income make this an expensive disease that can throw a monkey wrench in anyone’s well-laid plans for retirement.

Parkinson’s News Today’s 30 Days of Parkinson’s campaign will publish one story per day for Parkinson’s Awareness Month in April. Follow us on Facebook and Instagram for more stories like this, using the hashtag #30DaysofPAR, or go here to see the full series.