My YOPD story - when life gives you lemons
- _thesideeffect_
- May 3, 2022
- 13 min read
Around 5-6 years ago, I started noticing some strange and unexplainable symptoms on the left side of my body. My thumb felt stiff. A pinched nerve? Had I used my phone too much? I didn’t know what the hell it was, but it was annoying. It never struck me it could be something serious, at least not at first. But it was there all the time. It started out as a weird sensation in my thumb. Then my entire arm. Then my left shoe became too big all of a sudden, and my big toe started feeling strange too. I tried to ignore it but it became more and more bothersome.
When life gives you lemons, keep them, cause hey – free lemons.
I just learned to live with it, after all, I wasn’t in any pain. After about a year I went to see my doctor. He said: “Girl, you are shaking…” I hadn’t noticed. I was stressed, trying to give as much useful information as possible in the 15-minute time slot for my appointment. “Oh, that’s just me being a little hectic”, I said. He started talking about neurological disorders and referred me to a neurologist. A neurologist? A neurological condition? What could that be? While I waited for the appointment I did some research of my own. I soon learned that none of them would be good news. I read about ALS, MS, Parkinson’s disease, Huntington’s disease… More research led me to rule out a few of them. Parkinson’s however, remained on top of my mind. The early signs seemed very familiar. My doctor had specifically told me not to read on the internet. But how can you not, when your mind is occupied 24/7 with the fear of a life-changing diagnosis? I was not able to concentrate on anything. If you and I spoke around that time, chances are I didn’t hear a word of what you said. I did hours of reading. Scientific publications, patient testimonials, medical encyclopedias. Meanwhile, I was starting to have trouble typing at work. My left pinky kept pressing the shift button on its own. My walk became awkward, my left arm stopped swinging. Putting on Barbie clothes went from being just a boring task to a real struggle. Or pulling socks on a very angry three-year-old without getting them twisted. Washing my hair or my face, using both hands in coordinated movement. My mind was all over the place. What was the neurologist going to do, what was he going to tell me?
When life gives you lemons, say cool, what else you got?
A few weeks later, in December 2018 I got a handwritten note in the mail with my appointment. I was nervous as hell but trying to look forward to some good news. Reassurance. There is nothing wrong with you. Get my life back. Be grateful, relieved. Fix the problem, get on with it. In the meantime, I had been to see a chiropractor. He reassured me – that my symptoms were from a slipped disc in my neck. I was hoping he was right.
I walked into a worn-out office with ancient medical equipment on display. A chamber of horrors. The doctor met me and I explained my symptoms. “Have you been reading on the internet?”, he asked, smiling, slightly arrogant, but friendly. “Yes”, I admitted, looking down, ashamed. “So you have Parkinson’s? ALS?” “Yes”, I said. He laughed and asked me to stand up. For the next half hour, he had me do all kinds of tests with my hands and feet. “Close your eyes, point to your nose. The other hand. Lie down. Walk. Sit. Clap. Tap your foot. Hold your hands out. Close your eyes and count down from 10” I tried my very best to pass his “exam”. He asked me to sit back down on the old chair. “There is nothing seriously wrong with you”, he said. But he had noticed a tremor. He wanted to do an MRI to rule out all my feared diseases. He told me he was sure I was fine. He smiled. I asked; “Will I end up in a wheelchair? Can I work? What about my children?” I could tell he felt sorry for me. Not sorry because of the symptoms, but sorry for me that I was a hysterical lady. Hypochondriac. “Have you ever met someone with my kind of symptoms, who turned out to be fine, and the symptoms went away?” “All the time”, he lied. I left, feeling happy, with my life ahead of me. I made a few important phone calls to share the good news. Still full of questions and now aware of all the things I couldn’t do very well with my left hand. Things I don’t normally do, like tapping my index finger and thumb together really fast, or flipping my hand back and forth. A dark cloud appeared over my joy.
When life gives you lemons, don’t make lemonade! Make life take the lemons back! Get mad! I don’t want your damn lemons! What am I supposed to do with these? Demand to see life’s manager!
After another long wait, trying to concentrate on my life, finally, the day of the MRI. It’s so noisy, they said. Don’t open your eyes. Don’t move. I got undressed and removed every piece of jewelry in the little changing room. I closed my eyes and lay still for 30 minutes. Trying my best not to move. Trying not to think. The board beneath me moved back and forth and the noise was loud. I wondered if they could see my brain in the back. Maybe whispering to each other; «oh wow, look at that tumor.» Maybe feeling sorry for me. Maybe shocked by their discovery. I wondered if there was something really serious maybe they would tell me right away. Oh wait, maybe all my thinking will interfere with the brain scan. Maybe I shouldn’t think.
About a week later I received a message saying my pictures were back. There was a link to download them, so I did. They told me they would send the pictures to the referring doctor, the ancient man in the dark office. But I could also download them myself. Of course I did. Now I will give you one piece of advice. Don’t ever look at pictures of your own brain without a professional to interpret them for you. Just don’t. No use at all, except to scare the shit out of you. What’s that black spot? A tumor? That white area, is it empty? A hole? I took the pictures to my chiropractor and asked him to look at them. He said, “There is nothing wrong with your brain. And here is the slipped disc I told you about. That’s the cause of your symptoms.” When I got out, I called the neurologist. He had looked at the pictures, he said. “And?”, I asked. Knowing that in a few seconds he would tell me what I already knew. Something was definitely wrong with my brain. “There is nothing wrong with your brain”, he said. “I do, however see a slipped disc in your neck, but that’s not related to your symptoms.” He said he would tell me more in a few days when I had my appointment.
Unless life also gives you sugar, the lemonade is going to suck.
He confirmed that we had now ruled out all the serious conditions I had spent every minute worrying about. “Are you saying I don’t have Parkinson’s?”, I asked, feeling overwhelmed with joy and relief. “You don’t have Parkinson’s”, he laughed. “You are too young. In fact, I can guarantee it.” Wow. This is great news I thought. After asking him a hundred more questions to make sure I hadn’t missed anything, I felt a sense of peace. But wait – my symptoms, what are they? “Essential tremor”, he said. Nothing to worry about. Some people are shaky. He prescribed me some beta-blockers and instructed me to stop worrying, stop googling and do yoga. Try to relax. Live your life. "Are you sure?", I asked. He looked at the time. "Yes." But I had read about Essential Tremor. It’s on both sides of the body. And it does not give you slowness of movement, gait issues, and loss of arm swing. -Well, he said, the tremor itself is giving you that. Wait, what? That makes no sense. I had to leave now. I could tell he wanted me out.
When life gives you lemons, squirt someone in the eye
Fast forward around 6 months. Symptoms worsening, and I am painfully aware of them. They haunt me day and night, and it’s hard to think of anything else. I am now feeling convinced something is wrong. And I know it is in my brain. My muscle strength is fine, but my coordination is off. My left arm feels detached from my body. It does not respond to the signals I am sending. The pills are not working, and I have read that people with Parkinson’s should not take beta-blockers. I feel alone in my worries.
I go back to Omar, my doctor. I tell him what’s been going on and that I feel like neuro number one got it wrong. He tells me the old man behind the desk is the best one there is. But he agrees we should get a second opinion, and refers me to Oslo University Hospital Rikshospitalet. It’s a three-month wait. I try my best not to worry, but I can’t help it. What’s going to happen to me, will I see my kids grow up? Should I write the speeches for their weddings now? Letters for them to open when they are older, with advice for each age, in case I can’t give it to them in person? I keep on researching. Looking for hope, looking for benign conditions that mimic Parkinson’s. Maybe it's gluten? Maybe there are supplements or natural remedies? I start taking all kinds of capsules. Exchange my dairy with oat milk and try meditation.
When life gives you lemons, turn to life and say "I didn't order this shit, bring me the margarita I asked for!"
A recruiter calls me at work. I was definitely not looking for a new job. I was extremely happy with my job, coworkers, and my boss. But I knew there were changes happening in the company and I have made that mistake before. Maybe I should just hear her out. She said the job is PA to a highly respected business leader in Oslo. She couldn’t say more. Not where the office was, not which industry. I agreed to meet with them to hear more. The interview was the day before my appointment at Rikshospitalet.
By this time, my tremor has become more intense. I shake when I get nervous. I try my best to stay calm. The interview goes well, and I walk out feeling excited. I now know who the job is for, and I know that it might be the coolest and most exciting career move I will ever make. Of course, I want the job. But what if I get worse, what if I can’t cope? What if I can’t type?
The next day, I walk into Rikshospitalet. I go alone. I want to go alone. I check my email on my phone as I go in an email comes in from the recruiter. They want to see me back. My heart skips a beat. I take a deep breath and wipe my sweaty palms on my coat. The dark cloud is hanging over the excitement I feel. In the waiting room, there is an elderly lady shaking like crazy. I picture myself like her in a few years. The neurologist comes to get me. She seems nice. I follow her to the examination room and sit down on my assigned chair. She looks me in the eye. “Are you nervous?”, she asks. “Well, yes,” I say. I tell my story again and she tells me not to worry. “I am almost 100% sure there is nothing seriously wrong with you”, she tells me. But she hasn’t seen me flip my hand or touch my nose yet. She assures me that I should not be concerned. Maybe she too thinks I am just a nervous freak. Then she starts examining me. Hop on one leg. Walk down the corridor. Do this, do that. Her face turns pale. She does even more tests. “So, is it Parkinson’s? Do you take back what you just said?” I say. “Well, we can’t know that yet”, she tells me. But I can tell she knows. We both know. She tries her best to reassure me. I try to ask her what else it could be. She avoids the question. She tells me she will order a DAT-scan. A specific and insanely expensive scan of the brain to look at the dopamine receptors to rule out or confirm Parkinsonism. She also tells me that Parkinson’s doesn’t show up on an MRI. For the first time, I can’t hold back the tears. She follows me down the hall on my way out and tries to console me. I tell her I am close to landing my dream job. Should I take it? She stops, looks me straight in the eye, and says: “Of course, you should. You have your whole life ahead of you. You will work for many years. Yes, go for it!” I sigh with relief.
The next day, she calls me just to make sure I am at work and not at home crying. I assure her I am. And I tell her I know it’s Parkinson’s. She says we don’t know that yet, so I ask her to list me some other things it might be, with the symptoms I have. She says she can’t do that. She promises to see me after the scan, so we can talk more.
More waiting. Then the second interview, which also went well. But the dark cloud full of question marks still hovered over me. They called me the next day to say the main man wanted to meet me. It had now boiled down to two candidates, and I was one of them. I felt extremely proud of myself, and extremely happy. The DAT-scan was scheduled for Friday the 13th of September. I was meeting him on the 11th.
The office was beautiful. I was taken into a really dark, carpeted room with high chairs and a round table. I considered all the chairs, thinking carefully about where to sit before picking my seat. I put my shaking hands under the table. Stood up, looked around. Poured some water. Sat down. The door was quickly pushed open and a huge german shepherd came in, Mr. Boss Man in tow. I stood up and shook his hand firmly. I felt a little star-struck. And excited to meet him. We talked for more than an hour, and for a while there were four people (and a dog) in the room with me.
Two days later I am back at Rikshospitalet. Another narrow bed and machines around my head. A note saying, I might be radioactive after the procedure. I have no idea what that means. After the scan, I ask when I am going to see her, the neurologist who had promised to meet with me. The nurse has no clue what I am talking about. She is not there when they try reaching her. I shrug and walk out. I check my email, there is an offer for the job. I got it! Was it meant to be that this potential life-changing and devastating message would come at the same time as this extremely exciting job offer? I could now officially say I was on an emotional roller coaster ride.
They told me I could expect the results in a week’s time. The longest week of my life became two weeks of pure horror. Meanwhile, more research. Looking for hope. Good stories. I read about people living with PD. Saw youtube videos of young people. Someone like me. Do they still work? How does it affect them? I realized that this can actually be dealt with. It’s not that bad. I can do this. I have a family. I can’t give up. I looked up inspirational stories and decided I will make the best of it, whatever happens. I am not a victim. I am lucky.
When life gives you lemons chuck them back on life’s face and say, no thank you!
Two weeks later, while chilling out by a pool in Bangkok with my family I got an electronic message from the hospital on my phone. It was from the female neurologist I had met before. "Your brain shows clear signs of Parkinson’s", she wrote. My initial reaction, as soon as my heart resumed its beat, was calm and a little indifferent. A sense of relief. Finally an answer. I am not crazy. I had come to a point where Parkinson’s was what I was hoping for. It doesn’t kill you. This much I knew. Also, I had been right all along. I had known it deep down for more than a year. I started thinking about that arrogant dickhead who thought I was some sort of hysterical hypochondriac. She said in the letter I could email her any questions or concerns I had. I did that straight away. I got back in the pool and whispered the news to my husband. I have no idea how he reacted, I can’t remember. But he has always made me feel safe, no drama, no judgment. At that very moment, we were struck by an incredible thunderstorm and heavy rain and the hotel staff rushed us out of the pool and into safety. She responded to the email a week and a half later, but none of my questions were answered and I was left more confused.
When life gives you lemons, take out the salt and shot glasses and fill them with tequila!
On November 11th 2019 I was back at Rikshospitalet to get my official diagnosis. I felt safe. They were going to catch me. Tell me it was going to be ok. Parkinson’s disease is a degenerative brain disease. There is no cure. The brain cells that produce dopamine die. Most people are diagnosed after the age of 65. My brain is slowly dying. I am 38 years old. Two young children. My amazing sister-in-law went with me. We had no idea what was going to happen. But I had an almost romantic vision that there would be a whole team of experts waiting there for me. A 38-year old mother has been diagnosed with an old man’s disease. Surely it must be interesting for them. Surely, they would do anything in their power to keep me floating. Save me. Help me. Catch me. Fix it. We waited anxiously for the doctor. He came alone. My third neurologist. We politely took our seats in the little examination room. He looked at his computer screen. Opened a web browser, opened google. Typed “brain”. Clicked on “images” and said: This is a brain. Toggled to my file with the DAT-scan images and said: “This is your brain. You have Young Onset Parkinson’s disease.” I was stunned. Was this it? A robot delivering a huge life-changing message? No compassion? No empathy? He kept looking at the wall clock. “Don’t worry”, he said. “There is great symptom relief medication” He handed me a note with instructions on how to take the meds. “See you in 3 months”.
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