![\"\"](\"https:\/\/levenmetals.nl\/ziw\/wp-content\/uploads\/2005\/02\/jeanet-floor.jpg\")
<\/p>\nI hadn\u2019t taken a tumble in years, but this month I fell to the ground two times when trying to use the bathroom. It\u2019s due to a combination of being tired and badly positioned legs, because of which I sank to my knees. There\u2019s no way to stop it once it\u2019s started. Hein had to pick me up and I could do nothing to make it easier, I was dead weight. The second time I fell, I cracked my head on the floor. I saw spots for a second, but everything seemed fine. Only by the next day did we see what the damage was. While I was drinking, I felt like my jaw had been unhinged, the way my teeth gnashed together. And while I was eating my porridge, my remaining front tooth came loose. I now have three enamel stumps where my front teeth used to be <\/p>\n
Luckily, we had an appointment the next day as a last-ditch attempt to fix my teeth. I\u2019m split. On the one hand, I hate the way my teeth look, especially when I\u2019m around strangers. On the other hand, I\u2019m dreading another operation and am doubtful that there will ever be a prosthetic strong enough to stay attached when I\u2019m getting my teeth brushed. I\u2019d written another letter for clarification, containing a cost-benefit analysis. \u201cOh, don\u2019t worry about cost,\u201d a jaw specialist told us. \u201cYour insurance will cover it.\u201d Obviously someone who only thinks in sums of money. \u201cIt\u2019s not about the money,\u201d we replied, after which she wrote down the term \u2018quality of life\u2019. We met with a surgeon. Seeing as I almost always have my mouth closed, esthetics alone were not enough to warrant the operation. I could have cried. The female doctor suggested I get back in touch with my dentist to see if he couldn\u2019t do anything about it. The week after, he got back to us: negative. I\u2019ll have to live with three broken front teeth. <\/p>\n
I\u2019m less and less tempted to get out. Maybe it\u2019s because it\u2019s winter. It\u2019s undoubtedly a factor. Always having to wear a coat or needing to be hauled into the van is a lot of work. And I\u2019m getting sick of going on walks through the same park, especially since I can no longer drink coffee. After all, the tea parlour was always the focal point of our walks. It\u2019s still too cold to sit in the garden, which in itself isn\u2019t exactly \u2018leaving the house\u2019 either. Maybe it\u2019s because I\u2019m too nervous in public or social settings. Do I give up too quickly? What can I even do in the outside world, unable to speak, my teeth only making it worse. I\u2019m almost normal at home. But I know that sitting around at home isn\u2019t making me any happier. Because of that, I\u2019m glad I attended parent-teacher conference and went to that birthday party. <\/p>\n
I can still drink, but I can\u2019t do more than a few gulps. Not only can I not keep my head upright because of my neck, but I can\u2019t create suction as well as I could before. I drink for a bit, but if it isn\u2019t going well, I\u2019ll give up. The rest of it\u2019ll just go in my feeding tube. I use it more and more, even in public. Bystanders don\u2019t know what to do. They look away, but are also intrigued by this less than common phenomenon. Only a few people are brave enough to ask me about it. \u201cHow does that feel?\u201d I only feel it if the food is extraordinarily cold or hot, otherwise it barely registers. I don\u2019t mind using my PEG in public, provided that it\u2019s done decently. I hope it doesn\u2019t bother all of you, either. <\/p>\n
Lia, Hein\u2019s mother, turned 80. There were so many photographers present. This picture was taken by Adriaan. Of course, Floor is the looker in this one. Her kind smile, youthful skin and beautiful eyebrows are a huge contrast to mine. But the biggest difference is how carefree she looks, whereas I look almost frightened. I specifically asked for a picture of the two of us, but apparently when it came to it, I was too apprehensive about the result. And, the most important thing for me was keeping my mouth shut. <\/p>\n
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It\u2019s only now that I realise how much the construction of our sun room impacted me. I could write about nothing else, got writer\u2019s block and lost the drive to organise other things. By now, I\u2019m over it and back to organising. This week I got three confirmations of things I\u2019d planned. One of them was for our holiday in Scotland. They have some room for us after all! I haven\u2019t been inside a supermarket for over 6 months now. The weather was so bad on Saturday that, instead going on my normal walk through the park with my sister-in-law Netty, we went to the Albert Heijn. I vowed to get all of the things Hein tends to forget: tiramisu, croissants, a quiche, stroopwafels, etc. I longed for all of the things on the shelves that I can no longer eat. It\u2019s a good thing I don\u2019t go grocery shopping anymore. Back home, I always make shopping lists and usually decide what\u2019s for dinner. But I usually focus on functional groceries only. We only get sweets and treats when the kids remember put them on the list. <\/p>\n I\u2019d been planning a visit to the Euromast for some time [The Euromast is the highest building in the Netherlands. -Ed.]. The last time we planned on visiting it, the weather was too good to spend the day inside, so we went to the forest in Amsterdam instead, but this time the weather is so bad that the Euromast seems ideal. The top floor was roped off because of high wind and the barriers obstructed my view, but the restaurant with floor-to-ceiling windows had a great panoramic view. We\u2019d love to go back there when it\u2019s dark outside. <\/p>\n I hoped to avoid getting sick this winter. Winter was almost over and nobody had gotten sick yet. But then, one by one, my carer, Floor and my other carer got a cold. And now I have it too. The evening news called it an epidemic. I\u2019ve had a sore throat and a runny nose for the past few days and I\u2019ve barely written anything because of it. I\u2019ve started taking doxycycline again. We always have some in the house to prevent pneumonia. Luckily, one of my carers was able to fill in for the other as she recovered at home. I can\u2019t wait for spring to start. <\/p>\n ALS patients don\u2019t write history. I\u2019m convinced that, if ALS patients had longer lifespans, the disease would get more recognition. Patients are the driving force behind initiatives that spread awareness. Vincent Straatman was the impetus behind the Valscherm Foundation. That lead to the establishment of the ALS Centre. But after that, interest in ALS waned and the information was neatly divided between the UMCU and the AMC. I haven\u2019t heard from the ALS Centre in a while, besides a Christmas card. Vincent was looking for a way to get ALS into the public consciousness with him as the figurehead, and now Ardi Bouter is trying to do the same, without knowing about his predecessor. How would he? We don\u2019t leave much of an impact. And what about the VSN? ALS is the most represented illness within the VSN. That may just be because MS has its own union, with Maartje van Weegen as its figurehead. But the VSN doesn\u2019t actually have any patient involvement and is more medical than social. I\u2019m afraid it\u2019ll remain that way. ALS doesn\u2019t, and will never have, widespread public awareness.*<\/p>\n There\u2019s an empty white wall in our sunroom. What better way to dress it up than a painting or two? We\u2019ve wanted to get portraits of the kids for years. After a series of events, we found ourselves in an art studio in Haarlem one Saturday. Myriad portraits were shown to us; realistic, impressionist, with or without a backdrop, old and young people. By now, I can no longer see the wood for the trees. I don\u2019t care too much about the style, as long as the portraits look good. <\/p>\n Ward is so glad he doesn\u2019t have school. \u201cI don\u2019t have to do anything right now,\u201d he\u2019ll often say as he\u2019s lazing around. He celebrated the first day of the holidays by keeping his pajamas on all day. It\u2019s snowing outside. I\u2019ll be working on my scrapbook with Lieke later.<\/p>\n Tumble I hadn\u2019t taken a tumble in years, but this month I fell to the ground two times when trying to use the bathroom. It\u2019s due to a combination of being tired and badly positioned legs, because of which I sank to my knees. There\u2019s no way to stop it once it\u2019s started. Hein had … <\/p>\n
\nAfterwards, we\u2019ll be going on holiday to South Limburg. To our surprise, there were still vacancies. We\u2019ll be going with family instead of friends this time.
\nThe third confirmation pertained to my birthday party on April 2nd in the botanical garden, a beautiful location. Here\u2019s a link if you feel like visiting it too.<\/a>
\nI\u2019ve had a great week.<\/p>\nGrocery shopping<\/h2>\n
Euromast<\/h2>\n
Head cold<\/h2>\n
ALS patient union<\/h2>\n
Portraits<\/h2>\n
Holiday<\/h2>\n
*if you\u2019re actually interested, check out Stichting ALS<\/a><\/h6>\n","protected":false},"excerpt":{"rendered":"