Don't take DBS for granted

I had a traumatic yet enlightened experience during my MRI recently. It had less to do with worry about the possible interaction of the MRI with my Deep Brain Stimulation (DBS) equipment. Although the concern of coma or death was present, I had done all the steps to insure that didn't happen.

Turning off both neurostimulators

The trauma started when the MRI technician told me I had to turn off both neurostimulators. That requirement was not mentioned by my DBS Physicians Assistant/programmer as a requirement. Since the technician insisted I acquiesced and shut them both off.

I had not turned off both stimulators since they were implanted in 2014 and I had no idea what would happen. Within minutes I felt my body start to slow down and go rigid. However, since it was a short walk to the MRI machine I ignored the increase in my Parkinson's disease (PD) symptoms and focused on the possible MRI/DBS equipment interactions.

After an hour of MRI scans with anxiety about the procedure and a lot of shoulder pain due to the positioning of my arm for the scan, I was done.

Panic set in

When the technician rolled me out of the machine and asked me to sit up. I found that my rigidity and bradykinesia was so bad I couldn't move. My brain-muscle connection seemed completely gone. After the tech helped me to wiggle my hips and finally sit on the edge of the MRI bed, I started to panic more and asked if my wife could come in so I could turn on both stimulators. The technician said no it's not allowed and helped me to stand with great difficulty.

This is when the panic attack really escalated. I was only able to walk and move as what I imagined a person with advanced Parkinson's would be able to move. I was so rigid and slow it scared the crap out of me. Fears of; what if this was permanent, how would I be able to live this way jumped unbiddened into my brain. Truly it was a frightening experience.

When I got to my wife in the waiting room I immediately turned on my stimulators. Although the rigidity and bradykinesia had gotten much worse without the stimulators turned on within seconds I was back to my "DBS normal" condition which allowed me to walk out of the waiting room to the front office with no problems and I drove home with no issues.

A profound effect

This experience, although short in duration, had a profound effect on me. I realized how important DBS was and how it was still helping to mask symptoms as they progressed. Prior to this I was at the point where I thought the DBS was no big deal and took it for granted. I questioned if it was helpful at all. 

I now remember some of the reasons I did DBS in the first place. To help with rigidity, bradykinesia, and other symptoms. The exact same symptoms I experienced with my stimulators turned off. 

I will never again take DBS for granted and thank God for the foresight, support, excellent Doctors and stimulator programmers that have helped me along my DBS journey.