The Ribbon of Road Ahead

Not even Nemo could keep me inside the MRI.  I was snug in the narrow MRI tube.  Under my knees was a pillow.  A wedge kept my lower back and pelvis in a comfortable position. Soft blocks held my shoulders in the tray. My head was enclosed in a cage that reminded me of a Lacrosse helmet.  A handsome young man, Sam, was at the controls. “Ramp up the air, Sam”.  Full blast was not enough!  I watched the beginning of “Finding Nemo” through a mirror strategically arranged to catch the projection of the movie from Sam’s laptop. The beginning of Nemo is quite sad. Tears started slipping from the corners of my eyes. “Breath  Carol Breathe” I chanted to myself.  “Soon you and Dorie will be swimming with the turtles”.  Then, a cramp in my back.  Tears came harder.  I realized I was not going to make it through 70 minutes of this brain scan.   #2  scan completed its pinging and banging sounds. Thank God it was quiet for a second.  “Sam ?” “Yeah Carol. Ready for the next scan?”  I choked on my words.  I didn’t have the courage to stay in and didn’t have the courage to tell Sam I wanted out. “Carol, what’s going on? Carol?” “Get me out Sam!”. Sam must have run from the control room because he was right there when the tray slid me out.  

Some months ago I was contacted by a research assistant in the Gait and Balance lab at Oregon  Health Sciences University.  He described a study that fit me perfectly, except for one part…….15 scans of my brain in an enclosed MRI with  no PD meds and no ingestion of a calming agent of any kind.  The study was looking for correlations between balance and cognitive skills.  I had already completed three hours of cognitive testing without much break before I was lead over to the OHSU hospital for the MRI. I was tired , a little weepy over poor Nemo’s Dad losing his wife and kids. Except for little left uneaten Nemo, Dad Clownfish was alone in the world. I felt alone…in the busy hospital, with caring researchers and my husband of 33 years nearby…I felt alone.

We PWP can feel alone sometimes.  We can feel unwanted because we are different, or uncertain because of the physical and mental challenges we face. Left behind because we can’t keep up.   Nemo followed the “skippers” away from the “school” was drawn by the big blue sea. For awhile he was lost and alone. There were lots of scary things “out there”.  Things that wanted to eat him up, or misguide him, or sweep him away.  Although getting caught up in the big net can be such a bummer, Nemo and PWP survive by following Dorie’s advice to “Just keep swimming swimming swimming.”

They let me come back the next day. This time we traveled to Beaverton. The research team had identified some value in the data I provided.  So the wiring began at 9:15 am.  I walked fast, walked slow, turned right, turned left, spun around, walked a tight rope,  stood on foam cushions with and without eyes open. These activities were simple enough until I had to double task; balance and walking and spinning while counting backwards from 297 by threes or naming every other  letter of the alphabet.  After a  couple hours of this rodeo, I was whisked off to Dr Dan’s office where more cognitive tests were administered.  One test I had to name as many words beginning with “f” as I could.  Made me wonder what some people say cuz I was in such a mood by then that the “f” word almost snuck out. Hungry, tired and craving meds we got on MAX and snoozed to the Lloyd center for food and fellowship with an old friend.

I saw my friend Brandi today.  She asked if I received compensation for my time.  I told her I was given lunch money. She asked me how I felt about being a research subject.  I feel, as I have from the very day I was diagnosed.  I have to find some good in this miserable disease.  If my experiences as a research subject will one day make another PWP’s life easier, than by golly its worth any bit of inconvenience its caused me.

I think I will watch the rest of Nemo now.