My PD Story

It was one year into our relationship when Lewis was diagnosed with Young-Onset Parkinson’s disease (PD).  “If you’re going to leave, leave now, don’t wait,” he told me. “I will understand.” This year marks 21 years together for us. 

The diagnosis was a little shocking. We were in our early 40’s. I’d heard about Parkinson’s, but it didn’t sound like something I should look up online. We started going to meetings and events, but the people in attendance didn’t reflect us. So, I started volunteering with the Parkinson’s Foundation right away. It was volunteering where I saw different people — men, women, different age groups, different backgrounds — people moving. 

Getting Diagnosed 

In 2006, Lewis had a tremor, so he saw his general practitioner, then some specialists who diagnosed him with non-essential tremor. Eventually, we found Ohio State University Wexner Medical Center, a Parkinson’s Foundation Center of Excellence, where the movement disorders specialist diagnosed him with Parkinson’s. I was impressed that she was in the room for an hour, assessing his handwriting and walking. However, she said they could not 100% confirm PD until they looked at Lewis’ brain after death, which stood out to me.  

At the time, we were both working full-time, exercising, living life. The medications he was prescribed didn’t work for him. He was an MRI technologist who worked in a dark room all day, so he’d get sleepy. It was some trial and error before they put him on Levodopa. 

We didn’t really talk about it to too many people about Parkinson’s until we started figuring things out.

Getting Involved

I have been volunteering with the Parkinson’s Foundation for 20 years. I’m the type of person who needs to stay busy. I can’t meet for 90 minutes a month and do nothing in between. I was the Board President for the Parkinson’s Foundation Great Lakes Chapter, which had three Moving Day events. I would go to all three, be on all the calls and help plan. Moving Day is hard to describe, but if you go and just talk to one or two people and give them information, you leave feeling like you did something.

You can be as involved as you wanted to be when you volunteer with the Foundation. I felt like I was doing something.

Today I’m part of the Foundation’s  People with Parkinson’s Advisory Council.

Caring Through the Stages 

I always used to say, “I’m not a care partner,” but since Lewis had a series of surgeries and medical issues, I’m doing the laundry, fixing dinner, and doing groceries. I was probably in denial for a bit. Most mornings I help him get ready, make sure he has what he needs, then head out for work. 

We’ve experienced a lot with Parkinson’s. Three years ago, Lewis underwent deep brain stimulation (DBS) surgery. While he was cleared to cut down his medications after DBS, he stopped taking them altogether. Although he’s in a wheelchair, he kept falling when transferring. He fell 15 times in 20 days. We had to really talk and find a solution. 

We were lucky enough to set up an occupational therapist (OT) and physical therapist (PT) who come to the house and help him learn how to move around the house more safely. I always keep in mind that he has to really think about getting up and down, where I don’t. PT and OT help keep him active.

Self-Care & Advice 

Over 20 years, I’ve learned that there’s no such thing as perfect when it comes to being a care partner. There will always be some sort of struggle. There have been different points where I felt guilty for going running or exercising. My friends (my support circle) started giving me grief, “take care of yourself to take care of him.” I took that to heart. 

Today, most days I play pickleball for 90 minutes in the morning, go home, help get Lewis set up and go to work. It keeps me moving during the day. When Lewis is up for it, we go in the pool.

When I need answers about Parkinson’s, I use Parkinson.org and recommend that all care partners sign up for Parkinson’s Foundation emails, which is always helpful. If there’s a webinar that looks interesting, I join it — I’m partial to the Care Partner Conversations webinar series, which I’ve joined on the panel. 

Lewis and I have been through many hospitalizations together with Parkinson’s. He’s had knee and hip replacement surgery, in addition to DBS. Every time we feel prepared when we take the Hospital Safety Guide with us. 

For anyone new to the Parkinson’s community, I would tell them: 

• Lean on a support system, whatever that looks like for you (in-person, virtual, friends, family). 
• Know you are not alone; find resources that work for you. 
• Even though the internet is endless, find something you can connect with close to home.
• Follow the Foundation’s Facebook page, which has great posts; even if you’re not tech-savvy, you can stay in touch.

I’m also a big advocate for volunteering. Over the last 20 years, I’ve been able to help the PD community in different ways — from helping set up local Moving Day walks to serving on the community grants committee to advocating for care partners on the advisory council. Find what makes you feel good about yourself! 

Find a way to get involved with the Parkinson’s Foundation today.