The only item on the menu at Wendy’s that I previously enjoyed was their biggee sized iced tea. I used to drive through asking for the tea with extra ice and extra lemon. I haven’t been to Wendy’s lately asking for anything biggee sized or iced, particularly with the winter freeze in Colorado.
But instead, last night I had a new and different experience–biggee sized dyskinesia lasting for 3 hours and 25 minutes. I had NO dyskinesia before Deep Brain Stimulation (DBS) surgery for Parkinson’s in May 2005. However, it started to tiptoe in right after surgery, but it was no big deal until last night.
Last night it was a big deal. My arms were flailing, my head bobbing and my shoulders twisting and turning. I wrapped my arms around myself, tried the recliner and later got into bed hoping to confine these involuntary movements. Nothing worked.
I knew the dangers of going to ER during the middle of the night, particularly with DBS hardware in your body. No one would know what to do with you. That wasn’t an option.
Since my current neurologist referred me to a DBS specialist, I’m in DBS limbo land, awaiting a referral to see the next specialist.
The only available option was turning off the neurostimulator. I placed the therapy controller (which looks like a garage door opener) over the neurostimulator near my collarbone. I pushed the “off” button on the controller about 15 times, waiting about 10 seconds in between each attempt. Nothing happened. I called my husband and asked him to help. He made about 10 attempts, and finally we heard the confirmation beep of the “off” key and saw the yellow light indicating the neurostimulator was off.
Within one minute the flailing had stopped leaving a gentle rhythmic tremor of my left hand and leg in its place. What a relief. I can sleep with tremor but not dyskinesia.
Throughout the night, I had dreams of dying from dyskinesia. I wondered if my funeral dress would fit (probably not because I gained weight since DBS). Earlier in the day Tom talked about a neighbor who lived in a house where three dumpsters of trash were removed after the person died. I didn’t think that we had three dumpsters of trash but perhaps a couple of Tupperware containers of junk. I remembered that I hadn’t totally completed my essay for the Unknown Writers’ Contest due on February 1. I didn’t think it mattered because I would probably be an Unknown Person by then.
In the morning, I had no movement (akinesia), so we did the exact opposite of what we did the previous night. Instead of turning the neurostimulator “off,” we turned it “on.” Within a couple of minutes I was moving again.
You probably can guess what’s on my Things-To-Do list for today:
1. Complete my essay for the writing contest.
2. Clean out the junk drawer and declutter the house.
3. Find out the status of the referral to the DBS specialist.
The only item on the menu at Wendy’s that I previously enjoyed was their biggee sized iced tea. I used to drive through asking for the tea with extra ice and extra lemon. I haven’t been to Wendy’s lately asking for anything biggee sized or iced, particularly with the winter freeze in Colorado.
But instead, last night I had a new and different experience–biggee sized dyskinesia lasting for 3 hours and 25 minutes. I had NO dyskinesia before Deep Brain Stimulation (DBS) surgery for Parkinson’s in May 2005. However, it started to tiptoe in right after surgery, but it was no big deal until last night.
Last night it was a big deal. My arms were flailing, my head bobbing and my shoulders twisting and turning. I wrapped my arms around myself, tried the recliner and later got into bed hoping to confine these involuntary movements. Nothing worked.
I knew the dangers of going to ER during the middle of the night, particularly with DBS hardware in your body. No one would know what to do with you. That wasn’t an option.
Since my current neurologist referred me to a DBS specialist, I’m in DBS limbo land, awaiting a referral to see the next specialist.
The only available option was turning off the neurostimulator. I placed the therapy controller (which looks like a garage door opener) over the neurostimulator near my collarbone. I pushed the “off” button on the controller about 15 times, waiting about 10 seconds in between each attempt. Nothing happened. I called my husband and asked him to help. He made about 10 attempts, and finally we heard the confirmation beep of the “off” key and saw the yellow light indicating the neurostimulator was off.
Within one minute the flailing had stopped leaving a gentle rhythmic tremor of my left hand and leg in its place. What a relief. I can sleep with tremor but not dyskinesia.
Throughout the night, I had dreams of dying from dyskinesia. I wondered if my funeral dress would fit (probably not because I gained weight since DBS). Earlier in the day Tom talked about a neighbor who lived in a house where three dumpsters of trash were removed after the person died. I didn’t think that we had three dumpsters of trash but perhaps a couple of Tupperware containers of junk. I remembered that I hadn’t totally completed my essay for the Unknown Writers’ Contest due on February 1. I didn’t think it mattered because I would probably be an Unknown Person by then.
In the morning, I had no movement (akinesia), so we did the exact opposite of what we did the previous night. Instead of turning the neurostimulator “off,” we turned it “on.” Within a couple of minutes I was moving again.
You probably can guess what’s on my Things-To-Do list for today:
1. Complete my essay for the writing contest.
2. Clean out the junk drawer and declutter the house.
3. Find out the status of the referral to the DBS specialist.