{"id":158033,"date":"2019-11-14T16:27:40","date_gmt":"2019-11-14T21:27:40","guid":{"rendered":"https:\/\/patientworthy.wpengine.com\/2019\/11\/14\/38-cant-parkinsons-chronic-illness-czech-republic\/"},"modified":"2019-11-13T17:00:32","modified_gmt":"2019-11-13T22:00:32","slug":"38-cant-parkinsons-chronic-illness-czech-republic","status":"publish","type":"post","link":"https:\/\/patientworthy.com\/ru\/2019\/11\/14\/38-cant-parkinsons-chronic-illness-czech-republic\/","title":{"rendered":"«I’m 38. I Can’t Have Parkinson’s:» A Chronic Illness Story From the Czech Republic"},"content":{"rendered":"

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\u2019t go away. \u201cI stopped every 100 meters or so. I was afraid I wouldn\u2019t be able to cross the street,\u201d Martina says of that time. After two years of uncertainty, a diagnosis of Parkinson\u2019s disease at a young age seemed unbelievable.<\/em><\/p>\n

\u00a0The disease changed a lot of things. \u201cI never thought I\u2019d have such a disease, that I\u2019d one day be happy to walk one kilometer, that I\u2019d be happy to cut meat at lunch,\u201d she says. \u201cBut I have a daughter, a family. I can\u2019t just break down and collapse.\u201d<\/em><\/p>\n

I\u2019m 38. I can\u2019t have Parkinson\u2019s.<\/h3>\n

My childhood was happy. I remember that I had always been competitive and ambitious, and anything less than straight A\u2019s 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\u2019ve 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\u2026<\/p>\n

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\u2019t walk for a long time. She started at 19 months. We ran around to various examinations and when eventually nothing was found, Ad\u00e9lka 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.<\/p>\n

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\u2019t 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\u2019t able to take care of the household, my family…nothing. I\u2019d lost my appetite for life. My husband and mother had to take over my duties around the house.<\/p>\n

I started to walk poorly. I stopped every 100 meters, and was afraid I wouldn\u2019t 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\u2019t 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\u2019t even sign anything by 5 o\u2019clock. 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\u2019d go to the doctor as soon as we got back, which I did.<\/p>\n

I received a so-called \u201cstatim\u201d (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\u2019t know what else. Doctors first suspected multiple sclerosis<\/a>, but the MRI didn\u2019t 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.<\/p>\n

I searched the internet for information on what would cause the tremor, and when I read about the symptoms of Parkinson\u2019s, 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\u2019t have Parkinson\u2019s at age 38.<\/p>\n

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 \u201cprobably\u201d an early onset of Parkinson\u2019s disease<\/a>. He prescribed medication and said that I\u2019d supposedly have to make an appointment somewhere. When I told him that there wasn\u2019t 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.<\/p>\n

Christmas was coming. I picked up the medicine at the pharmacy, but closed it in a drawer and didn\u2019t 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\u2019t 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\u2019t due to stress. The tests ruled out Wilson\u2019s disease. The only test that could confirm or disprove Parkinson\u2019s was DaTscan \u2013 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.<\/p>\n

I\u2019ll never forget that day as long as I live. I didn\u2019t 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\u2019s disease with a prevalence on the left, which is why I had such great difficulty with the right side.<\/p>\n

My first reaction was crying and helplessness, but I also told myself I\u2019d 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\u2019t just break down and collapse.<\/p>\n

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 Kate\u0159insk\u00e1 street in Prague where they have more experience treating young people with Parkinson\u2019s. And so for almost a year I\u2019ve been going to see Professor R\u016f\u017ei\u010dka at the General Faculty Hospital on Kate\u0159insk\u00e1 street, whom I fully trust. He deserves great credit for the condition I\u2019m currently in. A year ago, when he told me optimistically, \u2018don\u2019t worry, it\u2019ll be better someday,\u2019 I was slightly doubtful. Today I know that those were not just reassuring words. What\u2019s important is not just the medication he prescribed, but also faith, and I think I\u2019ve got a lot of that.<\/p>\n

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\u2019d been suffering from suddenly falling asleep under the influence of the medicines; I\u2019m 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\u2019t even get there.\u00a0 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\u2019t do it. I often wonder where the disease came from. We don\u2019t 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\u2019t ever be solved. Maybe somebody would advise me to lay down in bed and wait for what was to come. Maybe I shouldn\u2019t plan anything any more, because what if my condition suddenly worsens? But I decided that I definitely wasn\u2019t going to lay down in bed and that I won\u2019t wait for what happens. Instead, I will try to still be useful while I can.<\/p>\n

So I joined the Parkinson-Help association as a volunteer. By doing so I help others and help myself. If you\u2019d have told me two years ago that I\u2019d 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\u2019ve had so many adventures and new experiences that I sometimes have the feeling that I hadn\u2019t really lived at all before. I\u2019ve been on a TV report (link here: http:\/\/www.barrandov.tv\/video\/31659-nase-zpravy-1-5-2015<\/a>) and have written a few articles. My colleague and I founded a Parkinson\u2019s club for the Karlovy Vary region. There\u2019s always something going on.<\/p>\n

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\u2019ve got it in a tub of honey. The muscles contract and it\u2019s 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\u2019s wrong with my arm, or whether the mouse is malfunctioning on me. That\u2019s why I started wearing a bracelet that says \u201cI\u2019m a Parkinsoner\u201d and the questions died down a bit.<\/p>\n

I\u2019m still ambitious. I don\u2019t 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\u2019t do anything. It isn\u2019t very predictable. Life goes in waves. I never thought I\u2019d have such a disease, that I\u2019d 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: \u201cMommy, the walking\u2019s good today, isn\u2019t it?\u201d Then I know that it\u2019s 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\u2019m going to try to put him in the corner.<\/p>\n

Written by Martina<\/p>\n

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.<\/strong><\/p>\n

\n

What are your thoughts on Martina’s story? Share your stories, thoughts, and hopes with the Patient Worthy community!<\/a><\/h4>\n","protected":false},"excerpt":{"rendered":"

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\u2019t go away. \u201cI stopped every 100 meters or so. I was afraid I wouldn\u2019t be able to cross the street,\u201d Martina says of that time. After two […]<\/p>\n","protected":false},"author":1,"featured_media":157848,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":[],"categories":[13450],"tags":[15427,15428,13547,13452],"_links":{"self":[{"href":"https:\/\/patientworthy.com\/ru\/wp-json\/wp\/v2\/posts\/158033"}],"collection":[{"href":"https:\/\/patientworthy.com\/ru\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/patientworthy.com\/ru\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/patientworthy.com\/ru\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/patientworthy.com\/ru\/wp-json\/wp\/v2\/comments?post=158033"}],"version-history":[{"count":0,"href":"https:\/\/patientworthy.com\/ru\/wp-json\/wp\/v2\/posts\/158033\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/patientworthy.com\/ru\/wp-json\/wp\/v2\/media\/157848"}],"wp:attachment":[{"href":"https:\/\/patientworthy.com\/ru\/wp-json\/wp\/v2\/media?parent=158033"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/patientworthy.com\/ru\/wp-json\/wp\/v2\/categories?post=158033"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/patientworthy.com\/ru\/wp-json\/wp\/v2\/tags?post=158033"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}