“I’m 38. I Can’t Have Parkinson’s:” A Chronic Illness Story From the Czech Republic

It started with fatigue. Then came problems with moving, hand tremors and problems walking. Multiple sclerosis was ruled out by magnetic resonance imaging (MRI). But the trouble didn’t go away. “I stopped every 100 meters or so. I was afraid I wouldn’t be able to cross the street,” Martina says of that time. After two years of uncertainty, a diagnosis of Parkinson’s disease at a young age seemed unbelievable.

 The disease changed a lot of things. “I never thought I’d have such a disease, that I’d one day be happy to walk one kilometer, that I’d be happy to cut meat at lunch,” she says. “But I have a daughter, a family. I can’t just break down and collapse.”

I’m 38. I can’t have Parkinson’s.

My childhood was happy. I remember that I had always been competitive and ambitious, and anything less than straight A’s was not good enough. After elementary school I went to secondary school and there I met my first big love. We were together for three years, but in my first year of follow-up study in the travel trade, my boyfriend fell asleep at the wheel and it cost him his life. I was on the verge of a nervous breakdown. At age 19 I suddenly felt like my life was over. My dad helped me a lot. My wounds healed a bit, but the scar remained on my heart. After finishing follow-up study I started to work, moving among several travel agencies, and I’ve been at the last one for 17 years now. 10 years later, I found my life partner. But two months after we met, a new blow came: At age 60, my dad had a sudden heart attack while playing tennis, and he died. Another tragedy and more great stress. Maybe somewhere there my future was being decided…

In 2007 I got married and a year later our daughter was born. The pregnancy was not without its problems. The birth was by caesarean and shortly after that the postpartum depression began, which luckily disappeared after three weeks. My daughter didn’t walk for a long time. She started at 19 months. We ran around to various examinations and when eventually nothing was found, Adélka started to walk. Pretty much it was when she wanted to. During my maternity leave I underwent three operations; one was for my gall bladder and the other two were colorectal operations. When I look back, I had occasional problems walking when I was on my maternity leave, but holding on to the baby carriage lessened those problems, and because I was out on long walks, I thought this was just ordinary fatigue.

In May 2011 I returned to my original job at the travel agency, and it seemed like everything was all right up until 2013. I was constantly very tired, but I attributed it to my increased workload. Working at the counter with clients requires a lot of effort. Sometime in February 2013 I started to feel pain in my right arm at the forearm and my motor skills deteriorated, especially when working at the computer. I thought I might have carpal tunnel syndrome or tendonitis, but it was strange to me that my hand was shaking a lot. At the orthopedist they gave me an injection and put my arm in a cast for a weekend. My arm improved a bit and I said I must be working too much at the computer. In the summer my right leg was starting to turn, but I didn’t notice it too much. I started to shorten my step until one time my mom asked me why I was shuffling so much. After summer vacation I returned to work and suddenly the fatigue was really big. At the end of September and beginning of October it had increased to the extent that I came home from work, washed, ate and slept until morning. I was in a pessimistic mood. I wasn’t able to take care of the household, my family…nothing. I’d lost my appetite for life. My husband and mother had to take over my duties around the house.

I started to walk poorly. I stopped every 100 meters, and was afraid I wouldn’t be able to cross the street. I had problems getting dressed. My right leg began to shake, and I had the feeling that I didn’t have stability and that the ground was undulating below me. I kept repeating at home that I was going to stop walking, and my terrified family around me kept walking around on tiptoes. Writing was another problem. I couldn’t even sign anything by 5 o’clock. In October I went to Prague for a training when a colleague noticed my shaking. She told me that I should do something about it, so I promised her that I’d go to the doctor as soon as we got back, which I did.

I received a so-called “statim” (a request for immediate treatment) for a neurologist in the city of Karlovy Vary. At the hospital they gave me more requests for all kinds of examinations, from magnetic resonance to rheumatology, immunology, vascular, and I don’t know what else. Doctors first suspected multiple sclerosis, but the MRI didn’t confirm that. How happy I was then! Still, I knew there must be something wrong with me. At the time I was home sick because of a virus, so I rested a bit and started to function again.

I searched the internet for information on what would cause the tremor, and when I read about the symptoms of Parkinson’s, I thought I certainly have these – I can completely see myself in these! Everyone thought I was a bit crazy and told me I couldn’t have Parkinson’s at age 38.

I kept getting worse. The fatigue increased and so did the tremors, so at the end of November I went again to the neurology clinic at the hospital in Karlovy Vary, where the head physician told me it was “probably” an early onset of Parkinson’s disease. He prescribed medication and said that I’d supposedly have to make an appointment somewhere. When I told him that there wasn’t anywhere to go at the moment, that all the neurologists are booked three months in advance, he just shrugged. Even if you kind of expect it, hope dies last. The diagnosis frightened me a lot, and the head physician wondered why I was so sad. I thought to myself: Is he kidding or is he serious? And what was the basis for the diagnosis of such a serious disease? Did he just guess? And I thought, enough! I have to deal with this differently and somewhere else.

Christmas was coming. I picked up the medicine at the pharmacy, but closed it in a drawer and didn’t take it. I wanted to wait for the diagnosis of the disease based on an examination. I arranged a visit to the neurology department at Motol Hospital in Prague, because in Karlovy Vary they told me (as I assumed) that they wouldn’t have a free appointment until March. At Motol I was examined by an associate professor. He spoke with my husband and I for a long time. He wanted to know how my husband sees my difficulties, which surprised me a lot. Immediately after the first examination he told me it wasn’t due to stress. The tests ruled out Wilson’s disease. The only test that could confirm or disprove Parkinson’s was DaTscan – a special examination that injects radioactive material into your veins, then you wait three hours and they detect the amount of dopamine in your brain. I underwent this examination at the beginning of January and on the 15th of January, 2014, I was supposed to call Prague for the results.

I’ll never forget that day as long as I live. I didn’t want to make the call. It was as if I knew the outcome in advance. I took a deep breath and dialed the number, and at the other end of the line, the associate professor told me that I really had Parkinson’s disease with a prevalence on the left, which is why I had such great difficulty with the right side.

My first reaction was crying and helplessness, but I also told myself I’d have to fight, that I have a six year old daughter at home, a daughter who needs me, that I have a family, and that I can’t just break down and collapse.

I started taking medication immediately. At Motol Hospital, there was a problem with capacity in the Center for Extrapyramidal Diseases (EXPY), so I made an appointment for the neurology clinic at Karlovy Vary, and we agreed with the doctor that it would be better if I visited the EXPY center on Kateřinská street in Prague where they have more experience treating young people with Parkinson’s. And so for almost a year I’ve been going to see Professor Růžička at the General Faculty Hospital on Kateřinská street, whom I fully trust. He deserves great credit for the condition I’m currently in. A year ago, when he told me optimistically, ‘don’t worry, it’ll be better someday,’ I was slightly doubtful. Today I know that those were not just reassuring words. What’s important is not just the medication he prescribed, but also faith, and I think I’ve got a lot of that.

The first year was very hard for me. I increased my medicines and my condition got even worse to begin with. I was tripping over things, my arm was worse, I was wiggling, and unfortunately I’d been suffering from suddenly falling asleep under the influence of the medicines; I’m still very tired. I move better with levodopa, but my condition has big fluctuations. I head out to a store full of energy – and suddenly I just get stiff and can’t even get there.  In December I underwent a rehabilitation stay at Motol Hospital and that really helped me. Mainly the Vojta Method of exercises has had beneficial effects on me. My husband and mom still help me a lot. Without them I really couldn’t do it. I often wonder where the disease came from. We don’t have it at all in my family, and I wonder if the stressful life moments from the deaths of two people close to me were the triggers for the disease. Who knows? This mystery probably won’t ever be solved. Maybe somebody would advise me to lay down in bed and wait for what was to come. Maybe I shouldn’t plan anything any more, because what if my condition suddenly worsens? But I decided that I definitely wasn’t going to lay down in bed and that I won’t wait for what happens. Instead, I will try to still be useful while I can.

So I joined the Parkinson-Help association as a volunteer. By doing so I help others and help myself. If you’d have told me two years ago that I’d be a member of an organisation like this, I probably would have laughed at you and knocked on my forehead. But life is simply mysterious. In two months I’ve had so many adventures and new experiences that I sometimes have the feeling that I hadn’t really lived at all before. I’ve been on a TV report (link here: http://www.barrandov.tv/video/31659-nase-zpravy-1-5-2015) and have written a few articles. My colleague and I founded a Parkinson’s club for the Karlovy Vary region. There’s always something going on.

I also went back to work. It can be very hard sometimes, because I suffer from suddenly falling asleep, and it often happens that my right arm goes stiff. It feels like I’ve got it in a tub of honey. The muscles contract and it’s impossible to move my arm correctly. When I want to control the mouse, I have to use my other hand. Clients look at me and keep asking what’s wrong with my arm, or whether the mouse is malfunctioning on me. That’s why I started wearing a bracelet that says “I’m a Parkinsoner” and the questions died down a bit.

I’m still ambitious. I don’t want to give up. I want to fight, but I have to take some losses too. Sometimes I do a lot of work at home, and sometimes I can’t do anything. It isn’t very predictable. Life goes in waves. I never thought I’d have such a disease, that I’d one day be happy to walk one kilometer, or be happy to cut meat at lunch, to eat soup without spilling, to brush my teeth and iron the laundry. But I get the greatest joy when my daughter, with her childish sincerity, tells me: “Mommy, the walking’s good today, isn’t it?” Then I know that it’s worth it to look Mr. Parkinson in the eye and tell him from my soul that his time with me might be endless, but that he has to count on the fact that every single day I’m going to try to put him in the corner.

Written by Martina

Note: This rare patient story is the fourth in a six-part series that features rare patient stories from the Czech Republic. Tune-in on Wednesdays to read these accounts from rare disease patients.

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