First Person

The good people that give me hope – my journey with Parkinson’s

I had Deep Brain Stimulation surgery in 2021, which improved many of my symptoms associated with Parkinson’s, most noticeably tremors. The prep for surgery was the worst part – getting a metal halo screwed onto my head, while awake, and then having my head shaved was not a cakewalk.

This complicated surgery also involved drilling holes in my skull, again while awake, placing electrodes in my brain, and then finally putting a neuro-stimulator in my chest, below the collarbone and above the left breast. With a remote, I can turn this device ON or OFF, but I’ve always left it on because as soon as it’s turned off, I know my extremely high-amplitude tremors could return. This neuro-stimulator is about the size of a pacemaker and when it is ON, I can’t go through the security X-rays at an airport, have an MRI or have a mammogram.

I was scheduled for a mammogram about a year ago , but because of DBS surgery and my COVID vaccines, it was recommended that I wait four to six weeks after vaccination to get a mammogram. But that, too, kept getting pushed off into the future. Finally, after about half a dozen rescheduled appointments, the mammogram was scheduled.

The day before the mammogram, my neurologist told me that the device needed to be turned off for the procedure. Had I ever turned it off since it was put in? I think she was a bit surprised when I said no. Well, she said, let’s see what happens!

It’s hard to explain what an out of control, full body Parkinson’s tremor feels like, but I’m going to do my best to describe it: Imagine yourself at the gym, running on a treadmill. You start at a quick walking pace but soon you are at full speed and you can hardly catch your breath. Now, start waving your arms around – yes, at full speed, and bob your head up and down as well. Keep those legs going! Next, the fellow from the treadmill beside you strikes up a conversation. You feel like you need to be polite and respond to whatever he is saying, but it is impossible to concentrate because all you can do at this point is run as fast as you can, wave your arms around, bob your head up and down and try to breathe. Yes, it feels like a big, breathless mess.

My neurologist warned me that I might have a minute or two before things got crazy. She probably didn’t say crazy, maybe something like “a bit shaky.” Then she turned the device OFF and in less than 30 seconds, things were out of control. Well, at least we know the Deep Brain Stimulation is really working for me! Truthfully, I had wondered.

My tremor would explode and then calm down, explode and calm down again, all with the push of a button.

Fast forward to the next day, and the mammogram, where we had a great plan – my husband was going to come into the mammogram room with me and turn the device ON and OFF as the situation dictated. In the car on the way to the appointment, he turned to me and asked, “Did you remember to bring the detonator?”

The remote was tucked safely into my purse, so nothing to worry about.

When we arrived at the clinic, the X-ray technician ushered us into the room and we explained to her what we needed to do; that there would only be about a five-second window of opportunity for each X-ray before my tremors were out of control. The technician understood. To expedite the process, she put my breast in the correct position, and then told my husband that when she was ready, he would press OFF on the detonator, she would run behind the glass and, as the tremor would be gaining momentum, she would take the X-ray as quickly as humanly possible, he would press ON, the tremor would subside, and so forth. Yes, it felt a bit insane, but we got it done.

Luckily for us, the technician was quite interested in the whole process, and how my tremor would explode and then calm down, explode and calm down again, all with the push of a button.

The following day, the X-ray technician called me herself to tell me everything was normal, and that moving forward whenever I needed a mammogram, she would make sure I had the proper support in place.

Every day on this Parkinson’s journey, I am genuinely amazed at how supportive the community has been as a whole. I know my family and friends have got my back, but having a perfect stranger go above and beyond is humbling and comforting.

I know there probably won’t be a cure for Parkinson’s in the near future but having people like this X-ray technician around gives me hope that everyday life for people like me can actually be pretty darn good.

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Authors

Christine Scheer

Contributor

Christine Scheer is a retired chef and lives on a farm with her husband, John. She was diagnosed with Parkinson’s Disease in 2015 at the age of 54. Her life has been transformed since she had DBS surgery.

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