Boston Scientific: When a Loved One Has Parkinson’s Disease - Seite 2

A few times, Ivan's stiffness and cramping was so bad that his chest tightened, leaving him gasping for breath. It was so hard to see him that way. I felt powerless. There were times I'd say to Ivan, "If I could take this from you for a day I would."

I know it sounds selfish, but there were also times when I thought God, this diagnosis has ruined my life as well.

The Parkinson's treatment that changed everything

Ivan could see the pressure on me. He felt so guilty about that and still does. But that was a dark time for us. I cried every day. The medication he'd been prescribed made him feel so ill that he wouldn't take it. This would cause arguments between us, because when he didn't take the medication, he couldn't move for hours, literally stuck in a chair. Meanwhile I was juggling work and caring for our two young children. At one point I said to him, "There comes a time where love isn't enough."

Once Ivan started deteriorating, I was thankful his doctor talked to him about deep brain stimulation (DBS), a treatment that uses a small, surgically implanted device to send signals to a targeted portion of the brain. The stimulation can improve motor function by reducing Parkinson's symptoms such as tremor, slowness and stiffness. In February 2022, within a year of Ivan's doctors talking to him about DBS, Ivan was in the hospital having the procedure done.

We weren't naïve; we knew DBS would not cure his Parkinson's. But today, I can say our lives are so much better. Now, I'm able to do what I want, when I need to. I don't have worries about Ivan being with the children-he's moving well again. We have pretty much our normal lives back.

We had an eye-opening moment when Ivan went for his one-year follow-up after DBS. The doctors turned off the brain stimulation, and his symptoms quickly came back. We both cried. Those symptoms had become a distant memory. It was such a big realization of how the DBS is masking Ivan's Parkinson's.

But by God, it's a fantastic mask.

Advice for other caregivers

So many couples fall apart and don't make it through a Parkinson's diagnosis. After all, there is no cure.

I've learned a few things since Ivan's diagnosis that I hope can help others in our situation:

Try to be open about your situation. I was forthcoming with my employers from day one of Ivan's diagnosis. Explaining it early on laid the groundwork for more understanding later. If you try not to bring this big, life-changing diagnosis that will undoubtedly impact you into your workplace, it will happen anyway. People will notice. I think you'll find people show you a lot more support than you think you'll get.