{"id":1690,"date":"2001-10-31T12:31:21","date_gmt":"2001-10-31T11:31:21","guid":{"rendered":"http:\/\/levenmetals.nl\/dagboek-oktober-2001\/"},"modified":"2018-02-14T17:18:14","modified_gmt":"2018-02-14T16:18:14","slug":"diary-october-2001","status":"publish","type":"post","link":"https:\/\/levenmetals.nl\/en\/diary-october-2001\/","title":{"rendered":"Diary October 2001"},"content":{"rendered":"

\u201cYou may have a fresh start any moment you choose, for this thing we call “failure” is not the falling down, but the staying down.\u201d<\/em><\/p>\n

Mary Pickford<\/em><\/p>\n

I found the abovementioned adage while making the new newsletter for the Lawrence LeShan Foundation, a spiritual organisation offering guidance to people with life-threatening diseases. It\u2019s the third newsletter with me as the lead editor. I was very moved by this motto.<\/p>\n

Watching the dog<\/h2>\n

Lieke is watching Buuf\u2019s dog. Buuf [a shorthand for \u201cneighbour\u201d -Ed.] is one of her former, you guessed it, neighbours. Thus, when she cares of me every Thursday, she brings her dog along. She can watch us both. Nervously, the dog entered the room, jumped on me and licked my hands. Horrible. Defenseless, I accepted my fate. Now I remember why I don\u2019t want a dog. This one constantly wants to sit on your lap. Lovely. Whenever Lieke feeds me sandwiches, she squeezed herself onto Lieke\u2019s lap. How cozy, the three of us, huddled together eating a sammich. The dog and I, in a constant battle for our sitter\u2019s attention. Ward came home and the dog bombarded him with love and affection. But of course, walking the dog is wonderful. Along with the neighbourhood kids, a proud Ward gallivanted around with the dog on a leash. She\u2019s fairly obedient. And I, too, warmed up to the dog by the end of the day. Of course, the inevitable question was asked: \u201cCan we get a dog?\u201d Luckily, the idea was quickly nipped in the bud. <\/p>\n

The aesthetics of a PEG<\/h2>\n

Applying a PEG (feeding tube) is no cakewalk. Many ALS patients dread it; because of practical, emotional and aesthetic reasons. Well, I\u2019ve given up a lot of aesthetics already; no more make-up, wide elastic trousers, sweater vests instead of the smart jackets I used to wear to work, no shaving my legs or armpits. The only thing I did was dye my grey hair again. I\u2019m a practical person. That\u2019s easier for my loved ones. Aesthetically, getting a PEG wasn\u2019t a huge hurdle. A dear correspondent of mine doesn\u2019t find a PEG appealing at all. However, in the meantime she is losing a lot of weight, to the point that she\u2019s become tired and lifeless. She\u2019s wearing herself out. She has been admitted to hospital. First, they\u2019re going to try to fatten her up with pureed food and such. If that doesn\u2019t work, she will need a PEG. She\u2019s expecting to remain hospitalized for 5 weeks. We visited her on Wednesday. Lots of sleep, eating for three and being spoiled a bit is her therapy. <\/p>\n

After two weeks of hospital, she hasn\u2019t gained an ounce, so she decided to get a PEG, which she pronounces PECH. Because she wasn\u2019t looking forward to having an endoscope in her throat, the PE(CH)G will be installed with a radiographer. It\u2019s an external operation with X-ray and only requires a small tube in the throat in order to make the knot. No gastroenterologist needed. Apparently, this method is frequently used in England on bulbar ALS sufferers, because their bulbar region is so sensitive. <\/p>\n

Slightly nervous<\/h2>\n

Thursday was the first day with our new help, Astrid. I was a bit nervous all morning. Not because of eating or drinking. No, as long as I can sit on a chair, I\u2019ll be fine. My nervousness is for the moment I have to use the bathroom. All morning, I debated \u201cshould I go now or should I wait?\u201d Eventually, I decided to make the leap; we went to the toilet. It went well and I spent the rest of the morning feeling relieved. I\u2019m like that with all of my carers who sporadically help me use the bathroom. Would they still be able to adhere to my old routine?<\/p>\n

Nose<\/h2>\n

With ALS, the subject of respiration is unavoidable. Many neurologists are against artificial respiration for ALS patients; the disease is too progressive. Even nasal intubation is advised against (like a correspondent of mine heard from her neurologist), because if ALS is above the neck (bulbar), it won\u2019t be possible to do it nasally, instead needing a tracheostomy (a hole and tube through the throat). It would be possible if the ALS is non-bulbar, but if it\u2019s both, intubation is impossible. One\u2019s facial muscles would be too rigid, or one\u2019s mouth would gape too much to properly install a nasal tube.<\/p>\n

I, a bulbar patient, have been going to the Centre for Home Respiration in Utrecht for three years and I have never heard about the impossibility of nasal intubation. Fortunately, a dear correspondent wrote to an American expert on the subject. What a nice fellow, writing back this quickly and elaborately. Last but not least; the answer is reassuring. There\u2019s so much medical incompetence in the Netherlands, or at least there\u2019s too many prejudices and aversions in the medical world. <\/p>\n

His answer was as follows<\/h3>\n

Regarding your question: “…do bulbar patients skip the mask ‘trial’?”`A one word answer is: “No !” . To breathe or not to breathe…. That is the question! It is certainly not true that “a mask is never an option for a bulbar patient.” It is true, however, that tracheostomy needs to be considered as ALS progresses, particularly as bulbar impairment becomes more severe (that is, if long-term survival is desired).<\/p>\n

The longer answer is that bulbar impairment with ALS is a continuum from mild to severe. Nasal mask Ventilation (noninvasive) is often successful for people with “mild”, or “mild to moderate” bulbar impairment. The pile up of secretions can become a problem with nasal ventilation, if secretions are pushed down into the back of the throat and airways, thus blocking air exchange and causing gagging or choking. However if one has an effective cough (using the assistive cough techniques) and secretions are not a big problem all the time, then nasal ventilation may work. It is very reasonable (unless bulbar impairment is severe) to arrange a trial of nasal ventilation. If it doesn’t work then go on to the next option (tracheostomy or palliative care).<\/p>\n

Edward Anthony Oppenheimer, MD, FCCP
\nPulmonary Medicine
\nLos Angeles, California – USA
\nEmail: Eaopp@UCLA.edu<\/p>\n

Trips<\/h2>\n

I\u2019m glad we went on so many trips and enjoyed the nice October weather. Since we\u2019ve had kids, we\u2019ve participated in the morning and afternoon festivities on October 3rd (The anniversary of the end of the Siege of Leiden). After the parade, the festival became a drunken mess and the atmosphere turned hostile. Thus, we made our way back through Breestraat, watched the water show and watched another parade (like we always do). We\u2019ve been doing it for years, but it looks like it\u2019s coming to an end. Floor couldn\u2019t come this year. She went out with her friends, returning at midnight. After the fireworks, we went to pick her up. Ward did come with us, but he had other plans with his friends at three, so we left early. We ate hotchpotch and that was it, the 3rd of October had passed. <\/p>\n

The next night, we were supposed to go see the film Nynke, but seeing as it played on a screen in an upstairs area, we watched La Pianiste instead, not my preferred choice. It\u2019s a hards ruthless story. It did make an impression in me, unlike Bridget Jones\u2019s Diary, so at least it was intriguing. We had drinks afterwards, which was nice. Despite the fact that it was already October, we sat outside on a heated terrace. While I barely drink anymore (I used to drink a lot), I enjoyed a delicious Grand Marnier. <\/p>\n

On Sunday, we visited Dordrecht with some friends. Every first Sunday of the month, a whole route of charity shops and art galleries open their doors. Gorgeous city, Dordrecht, it was a pleasant afternoon. Prince Willem Alexander and Maxima walked the exact same route the day after. The kids, however, are less and less likely to tag along. Floor\u2019s excuse was that she had to do homework and Ward\u2019s neighbourhood football tournament was finally happening. There weren\u2019t as many people as we had hoped, but it was great fun nonetheless. I love the fact that they organise things like that.<\/p>\n

Op school stonden ze op het bord geschreven,<\/em>
\n het werkwoord hebben en het werkwoord zijn;<\/em>
\n hiermee was tijd, was eeuwigheid gegeven,<\/em>
\n de ene werkelijkheid, de andere schijn.<\/em><\/p>\n

Hebben is niets. Is oorlog. Is niet leven.<\/em>
\n Is van de wereld en haar goden zijn.<\/em>
\n Zijn is, boven die dingen uitgeheven,<\/em>
\n vervuld worden van goddelijke pijn.<\/em><\/p>\n

Hebben is hard. Is lichaam. Is twee borsten.<\/em>
\n Is naar de aarde hongeren en dorsten.<\/em>
\n Is enkel zinnen, enkel botte plicht.<\/em><\/p>\n

Zijn is de ziel, is luisteren, is wijken,<\/em>
\n is kind worden en naar de sterren kijken,<\/em>
\n en daarheen langzaam worden opgelicht.<\/em><\/p>\n

Ed Hoornik<\/em><\/p>\n

With this poem, Gerard said farewell to me. The last three lines were especially important to him. Gerard was my correspondent and friend for more than 6 months. He was like my father; he started every email with \u201cHello, girl\u201d, and he encouraged me to keep publishing my diary. He was an enthusiastic reader. I got an email with this poem one day before he passed. I\u2019m thankful that he thought of me, even in his last moments. <\/p>\n

Toenail<\/h2>\n

Yesterday, my toenail was removed for the second time. My toe refused to heal and kept getting infected and growing fibromas. After half a year of messing with Biotex, silver nitrate and \u201copen-air therapy\u201d, my GP had had enough and referred me to a surgeon once more. Apparently, there is too much pressure on my toe. Yesterday was the day. The injection is the worst part, along with the fact that the bandages can\u2019t be removed for two days. After moving me though, the bandage already unraveled after half a day. Thus, we put a normal bandaid on it and I\u2019m already wearing shoes again because it takes away some of the pain. Let\u2019s hope it heals this time. <\/p>\n

Off day<\/h2>\n

Sunday was one of those off days. It happens every couple of months. I wake up with a headache. Immediately, the anxiety comes in: \u201cI hope it\u2019s not from nocturnal chest tightness that\u2019s common in ALS patients\u201d. I\u2019m cold and I feel nauseous. We cancel on our afternoon guests. I don\u2019t eat anything all day. To make things worse, I got a terrible email. I keep crying about it, which isn\u2019t making my head ache any less. At night, we received the news that Gerard had died. What a day. Luckily, I slept well and woke up the next morning fresh and without a headache. <\/p>\n

Passion<\/h2>\n

On Saturday evening we went to a Hester Macander show, a comedian. The theme of the show was focusing on looking for passion, instead of on the things we do to keep ourselves busy. It resonated with me. I\u2019ve wondered before what I would like to be if reincarnation were real. My conclusion is that I would like to be passionate about one all-overshadowing thing. I would love to make music. I think music is one of our most primal emotions, a language that transcends culture. Making music together is energising. Another possibility is becoming a photographer, a very ambitious one of course, one does have to be unique. Or I\u2019d start a shelter for homeless children in a third-world country. Everyone probably has dreams like that. That deep down, there is a great person within you. The reality is, you\u2019re already doing the best you can, which is a monumental task in itself. <\/p>\n

October<\/h2>\n

October was a good month. Pleasant weather that made going on trips possible, even during autumn break. The new help is doing fine and that\u2019s calming. The renovation of the bathroom and shower is taking forever, but we\u2019re not really working on it that hard. Getting into the one square metre shower stall is still manageable. And I\u2019ve warmed up to the commode. I do miss having a project, like my book last year, or the musical the year before. I\u2019m looking for something new, but I don\u2019t know what. For now, I have plenty of work to do before Sinterklaas. <\/p>\n","protected":false},"excerpt":{"rendered":"

\u201cYou may have a fresh start any moment you choose, for this thing we call “failure” is not the falling down, but the staying down.\u201d Mary Pickford I found the abovementioned adage while making the new newsletter for the Lawrence LeShan Foundation, a spiritual organisation offering guidance to people with life-threatening diseases. It\u2019s the third … <\/p>\n

Continue reading “Diary October 2001”<\/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":[86,82],"tags":[97,127,119,106],"class_list":["post-1690","post","type-post","status-publish","format-standard","hentry","category-2001-en","category-diary","tag-beademing-en","tag-bulbair-en","tag-neuskapbeademing-en","tag-peg-en"],"yoast_head":"\nDiary October 2001 - 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\/dagboek-oktober-2001\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Diary October 2001 - Living with ALS\" \/>\n<meta property=\"og:description\" content=\"\u201cYou may have a fresh start any moment you choose, for this thing we call “failure” is not the falling down, but the staying down.\u201d Mary Pickford I found the abovementioned adage while making the new newsletter for the Lawrence LeShan Foundation, a spiritual organisation offering guidance to people with life-threatening diseases. 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