{"id":1612,"date":"2000-03-31T19:18:50","date_gmt":"2000-03-31T17:18:50","guid":{"rendered":"http:\/\/levenmetals.nl\/dagboek-maart-2000\/"},"modified":"2017-12-29T15:52:21","modified_gmt":"2017-12-29T14:52:21","slug":"diary-march-2000","status":"publish","type":"post","link":"https:\/\/levenmetals.nl\/en\/diary-march-2000\/","title":{"rendered":"Diary March 2000"},"content":{"rendered":"<h2>Spring break<\/h2>\n<p>This year we went to Limburg on spring break. We rented an actual mansion in Gulpen. Nine bedrooms, a lounge area, a bay window with a stunning view of the hills, not to mention the tennis court. We felt like royalty. The house wasn\u2019t very wheelchair accessible, sadly. We managed just fine, though. I had a sink in my room and we\u2019d brought our own raised toilet seat. The bathing facilities weren\u2019t suited for me, so every morning I was hand-washed by Hein. Other than that, the location was perfect.<!--more\u2192\n\nWe spent the entire weekend with the Kroft family. There wasn\u2019t a cloud in sight. We drank coffee court-side and went hiking in the surrounding hills. Who would have thought that I\u2019d ever go hiking again. I\u2019m not saying it was smooth sailing all the way through. My wheelchair was put on a leash so my wheelchair could be pushed and pulled simultaneously. It\u2019s a shame that Limburg is full of turnstiles. Not too wheelchair friendly, as you can imagine. What should have been a tranquil hiking trail had turned into an obstacle course, which meant that we had to walk along a highway for long stretches of time. Not fun.\n\nDuring one of our hikes, we lost sight of Ward at a local watermill. We had walked for over a kilometer before I noticed that grandma was no longer accompanied by him. I felt immense foreboding. Hein and Paul immediately ran back to look for him, but in that moment my mind was conjuring up horrible scenarios. To Ward\u2019s eternal credit, he had stayed calm. Hein and Paul found him playing at the playground next to the mill. He had told the mill\u2019s attendants that he had lost his parents. Things got a bit emotional when Paul and Hein came to pick him up, but when he rejoined the group, Ward acted very cool. After this incident, however, Ward preferred to stay close to the group, usually holding hands with Tim or Floor. When grandma Corrie came to visit, Ward\u2019s little misadventure was recounted with gusto. \n\nMy family was eager to help me. My 19-year-old niece Sanne was particularly caring. Surprising, considering her age and the fact that we barely got to see each other. I think it\u2019s wonderful that our children get to grow up surrounded by such a tight-knit family. They\u2019re truly part of something greater than themselves. \n\nWhen the weekend was over, most of the family departed (barring the kids who didn\u2019t have to go to school and their parents) and so did the gorgeous weather. Apart from a visit to a limestone cave, we didn\u2019t do much adventuring after that. We went indoor climbing and swimming a lot, activities that are lost on me. I became more of an observer, my colleagues being the two grandmas who came with, which usually wasn\u2019t too thrilling. On the last day of spring break we went to visit my colleague Jan and his wife Marion in their Limburg post-and-beam cottage. We were warmly greeted by Jan, who had made a ramp out of wood so I could get into his house. If the weather had been better, we would have gone walking through his breathtakingly gorgeous garden. \n\nMy return home wasn\u2019t as bad as I was expecting. I actually felt content easing back into my old routines and habits. It felt like lowering myself into a warm bath. I had lot of emails to get through, from both strangers and acquaintances. I\u2019m so happy with my homepage. It brings me closer to other people. \n\n\n\n<h2>Off day<\/h2>\n\n\nIn the midst of spring break I had a total off day. One little thing went wrong and the whole day is wasted. I live through others too much. Because of my limited ability to undertake certain activities, I pressure people into doing the things I would do, especially Hein. Those activities include, but are not limited to: playing tennis with our son, preparing delicious treat for the kids, making sure pictures are well-framed\u2026 I\u2019m a bit of a director. Hein doesn\u2019t like being directed. On holiday I insisted that Hein plays tennis with Ward. On Thursday I suggested it to him again, to Hein\u2019s annoyance. He grumbles about it, causing me to burst into tears. I couldn\u2019t stop crying. I cried so much that my head hurt and my stomach turned. How I would love to play tennis with Ward myself. Luckily, days like this one rarely occur. \n\n\n\n<h2>The musical<\/h2>\n\n\nAfter I got the teachers\u2019 green light, I enthusiastically continued writing the 6th grade musical. After spring break ended, I sent the school my first draft. Floor told me that her teacher had read it to the class almost word-for-word. My motivation was doubled and I was unstoppable. Floor tried to censor my creation somewhat, in particular a joke about the school\u2019s headmaster. Remove it, she told me, so of course I left it in. During her teacher\u2019s live reading, she anxiously thought to herself: \u201cplease let her have taken that part out.\u201d Not likely. The joke got some laughs, luckily. I imagine it\u2019s a fairly awkward position, being a writer\u2019s daughter. Anything and everything you say at home can be used against you. For instance, Floor had a big zit on her face, and I was already chuckling at the idea of putting zits in the musical. Floor made me promise twice to not include any zit jokes in the play, but last Sunday she had a change of heart. I think she just stopped caring. \n\nI love working on the musical. Give me something to do and I\u2019ll put my heart and soul into it. The play hasn\u2019t left my mind since its inception. I finished it in under three weeks. Floor keeps me posted about the reception of my work. Next week, she even has to audition to get the part she desires most. I hope she gets it.\n\n\n\n<h2>Homepage<\/h2>\n\n\nI\u2019m getting more and more comments on my homepage everyday, including replies from PALS. They ask for information, just want to say hi or, most surprisingly, talk about how they believe in recovery. One of my correspondents is keeping me posted on one of their friends who is in therapy in Mexico. The programme is still in its early stages, but people are hopeful. Another person told me that she has had ALS for 12 years, but through homeopathy the disease was halted, which even allowed some recovery. When I asked for the homeopathy clinic\u2019s address, she surprised me. She told me that many people had asked her for the address, but none of them had actually visited the clinic. In her experience, \u201cpeople (healthy or not) prefer to do fun things first before even thinking about the more serious things in life (like living with ALS).\u201d Interesting, firstly because of the fact that my fellow PALS isn\u2019t willing to give the address unless she\u2019s sure that I\u2019ll actually do something with it. I wouldn\u2019t have taken that stance. If I had found a great way of dealing with ALS, I would be screaming it from the rooftops. It\u2019s someone\u2019s own responsibility if they\u2019re willing to act on my advice. Secondly, it\u2019s interesting that so many people ask for the address to her homeopath despite not being willing to actually visit the clinic. Why? Do they fear becoming too hopeful? Do they just not believe in treatment\/improvement? Are they afraid to live the rest of their lives vegetating? That last one is my greatest fear. It\u2019s a touchy subject. Would the people around me be able to handle another decade of this? My mother must have wondered about this too, because she told me to ask for the address again, adding: \u201cask her about who\u2019s caring for her, because I can\u2019t see myself doing it for the next 12 years.\u201d She has a point. To be continued.\n\n\n\n<h2>A difficult weekend<\/h2>\n\n\nFloor had a busy weekend, not unlike most weekends: sleepovers, parties, birthdays, acting practise, going to the movies. Ward was preoccupied too. He went to the zoo with Koen, a friend he\u2019s had since birth. Otherwise he would have just been cooped up with his parents. Hein and I, on the other hand, had absolutely no plans. Surprising, considering we are real \u201cweekend people\u201d. Recently we\u2019d gone to the harbour in Scheveningen, the beach and a forest known for good hiking trails. This weekend though, we had nothing planned. Bad timing, considering we could really do with some distraction. Hein was in a bad mood, which happens from time to time. Having nothing to do amplified his crankiness. By a stroke of luck we ran into Carola at the tea parlour. We really needed that, something social to do. Anything is better than arguing all day. I cry way too quickly for my liking, after which talking coherently is basically off the table. Not helpful. The arguments in general are useless anyway, they change nothing about our situation. Sadly, that stress has to be vented in some way. Most of the weight is on Hein\u2019s shoulders. Always having to be ready to assist me in whatever, even at night, must be draining. Especially since I used to be so autonomous. \n\n\n\n<h2>Physical<\/h2>\n\n\nWe went to Utrecht again for a lung checkup. My lung capacity has shrunk to 1.5 litres and I think I really messed up the test. I was hyperventilating (using 20% more oxygen than usual). Nevertheless, I want to get the feeding tube installed in April. Eating is messy, my food usually being a pureed mush. It also requires a lot of concentration on my part. I notice it the most whenever I play bridge. Combining cards, eating, drinking and talking is a hassle. I asked if I could be hospitalized for one night (instead of two) when I get my PEG installed, which isn\u2019t standard procedure. I was more in control of my emotions than during the last checkup. Our post-examination talk was very pragmatic. \n\nWalking has become a more difficult and stiff affair. I\u2019m becoming more insecure about it. Using the bathroom has become a challenge indeed. Our house is maze-like, innumerable obstacles. At every corner my feet start pointing inward, causing my knees to buckle. Talk about bowleggedness. I have a tendency to shuffle, making me trip over my own feet. Sometimes, I\u2019ll look at the electrical wheelchair and think: \u201cis it time?\u201d It\u2019s summertime, so it would actually be more convenient to use it for in the garden. What\u2019s keeping me from using it? Probably my unwillingness to adapt to and learn new procedures in everyday life. Not only for my sake, but for the sake of my carers, who would have to do the same. I\u2019m afraid that my legs will deteriorate faster if I don\u2019t use them as much. Still, the wheelchair is becoming more appealing everyday. \n\n\n\n<h2>A new drug?<\/h2>\n\n\nWe were watching the news on Wednesday night. I was listening with half an ear. That is, until I heard them talking about how a drug used to combat Parkinson\u2019s could be the key to fighting ALS. Suddenly, everyone was on high alert. Ward asked me if I have ALS. Later, he told me he wondered when the medicine would arrive. On Thursday we searched the newspapers for an article on the development. It was mentioned in two of them. \n\nBy now, the excitement for the cure has kind of died down again. It\u2019ll probably be years before the drug is actually ready for use. Moreover, I heard that the lead developers of the drug were unwilling to start testing on patients who have ALS instead of Parkinson\u2019s. Why hold a press conference about it then? All you\u2019re doing is giving ALS patients false hope. I wrote the network a letter voicing my complaints about their flagrant use of misinformation.\n\n<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Spring break This year we went to Limburg on spring break. We rented an actual mansion in Gulpen. Nine bedrooms, a lounge area, a bay window with a stunning view of the hills, not to mention the tennis court. We felt like royalty. The house wasn\u2019t very wheelchair accessible, sadly. We managed just fine, though. &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/levenmetals.nl\/en\/diary-march-2000\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &#8220;Diary March 2000&#8221;<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[85,82],"tags":[],"class_list":["post-1612","post","type-post","status-publish","format-standard","hentry","category-2000-en","category-diary"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.5 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Diary March 2000 - Living with ALS<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/levenmetals.nl\/en\/diary-march-2000\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Diary March 2000 - Living with ALS\" \/>\n<meta property=\"og:description\" content=\"Spring break This year we went to Limburg on spring break. 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