1st of September 2018
It is March 12, 2018. I walk into the neurologist’s treatment room.
I have been suffering from a dragging left leg for a number of years now, but lately my left hand doesn’t work either. My hand remains ‘standing’. It’s as if I can no longer control it with my willpower. And because my hand remains standing, I drop things: the laundry basket, a wine glass, my phone. Also my left arm does not swing when I walk. It will just hang down as if it has no say in it all. And talking about having a say: I also seem to have troubles with finding the right words for the right things lately ..
If I focus all of my attention on my left hand, I can move it, but it moves in jolts. Like a cogwheel. And meanwhile my right hand pretends that nothing is wrong. Strange. Very strange.
Cogwheel phenomenon in Parkinson’s disease (left hand)
I hear myself telling the neurologist that I find it rather funny that both the defective foot as well as the defective hand are on the left side of my body. I find that interesting. The scientist in me sees points of reference.
The neurologist does tests that I would never have thought of doing myself. She asks me if I want to tap on the floor with both feet as quickly as possible. Confronting. Because no matter how hard I try, my left foot doesn’t keep up. Its speed decreases further and further until my foot stands still completely.
Also when I try to make circles with both of my arms, my left arm doesn’t cooperate. It moves more slowly with every repetition and doesn’t stretch out as far as my right arm. My entire left side feels stiff.
The provisional verdict
After my neurologist has observed my moves for about ten minutes, she has this worrying look in her eyes. I invite her to share her thoughts and she replies:
“I’m sorry to tell you but I think you have hypokinetic rigid syndrome, in this case idiopathic Parkinson’s disease. I’m almost sure because you have left-side onset of the syndrome. You show obvious signs of bradykinesia, which is slowless of movement. To be sure it isn’t something else, I will have an MRI of your brain taken. Also, a blood test should exclude that you have Wilson’s disease. Copper deposits in the brain cause neurological symptoms that may appear similar to the symptoms of Parkinson’s disease and we want to make sure that this isn’t the cause of your problems.“
I leave the neurologist’s treatment room with an increased vocabulary of medical terms and two referrals: one for a blood test and one for the radiologist. The next day I find myself lying in a ticking machine called an MRI.
On the 14th of March I return to the neurologist. She says:
“We didn’t find any abnormalities on your brain scan, which confirms my earlier diagnosis. Unless the blood test tells us otherwise you are a YOPper, a person with “Young Onset Parkinson. There is no cure. There are different types of medication to mask the symptoms for about ten years. This period is also called the “honeymoon” period”.
Within two days I’ve moved from a healthy person with some health problems to being a patient for the rest of my life. The blood test confirms that there is no way back.
I’ll have to start adapting.