A great tragedy has occurred to me personally and to my daughters, Francesca and Grace. I’m talking about the death of my darling wife, Lindsey. Her death shocked her many friends and acquaintances. I started on this entry when Lindsey was undergoing chemotherapy. Then she was taken ill and went to hospital. She never left. I stopped writing. There’s no way that I could’ve written the blog under those circumstances. My brother Ljuba, is a retired surgeon, he told me that she had weeks to live. He was unerring in his diagnosis. My situation made me particularly frustrated. I couldn’t be with her. Her journey to death shut me down and left me inconsolable. She was the love of my life. Words do not exist to say how much I miss her.



After a certain amount of time, I realized that I didn’t want to stew in my own grief. So I went back to my blog. I dedicated this blog to Lindsey. This entry reinforces that.



I thought that I´d write an entry about the pros and cons of living with ALS.



Pros.



I´m alive. In my opinion, that’s a whole lot better than being dead. I don’t believe in the Hereafter. I believe that there is a whole bunch of nothingness after death. We have evolved as a species, for millions of years. As Wendy, the social worker, said to the two election workers, who came into my room to register my vote, “he has all his mental faculties”. The French philosopher Descartes said, “I think, therefore I am”. That is the way that I look at it. Ok, I´m a bed bound paraplegic, unable to do anything for myself, reliant on nurses to do everything for me, yet there is still quality of life with me.



I watched a documentary recently about an English guy who was diagnosed with motor neurone disease (the term they use in England for ALS) at exactly the same age as me, 51. His disease progression was much faster than me, inside 18 months, he was totally incapacitated. He was on the path of death, when he suddenly decided to extend his life by having a tracheostomy. What was interesting to me, was that his doctors recommended that he don’t have the operation and die, because “his quality of life would be so low”. Surely that’s his decision. I´m testament to the fact there is considerable quality to my life, even though I´ve lost the use of the vast majority of my muscles and rely on a ventilator to breathe. One difference between him and I, is that I´m in a hospital, he´s at home. I´d hate to be at home. There is an inevitable distance that comes into play, between you and your family with this disease. They can’t help but feel alienated by the condition. In my case, I went into hospital at exactly the right time. My family are able to live normal lives and visit me often, that’s by far the best solution.



I consider myself incredibly lucky to have my own room in the residentual hospital. I´m grateful that there are residentual hospitals in the Canada Health system. I shudder to think what my fate would have been in a third world country, or even in the US, where my family would have been burdoned with hundreds of thousands of debt for my hospital care. If I was in the States, I would much rather die, than saddle my family with debt. In the US, ALS is considered a very expensive disease. Here in Canada, I´m not out of pocket in any way. I am unbelievably lucky to have worked at the university just long enough to qualify for long term sickness benefit. I didn’t have to pay for both of my computers, the local ALS society provided my scooter, power chair, ramps etc. I have waver status for my care, which makes it very affordable.



The other “pros” are plentiful. I´ve seen my daughters grow up; in Francesca´s case, from 10 to 21 and with Grace, from 7 to 18. You cannot put a price on that. For the majority of that time, I´ve been in hospital, so they´ve visited me at least once a week. Plus, I´ve had extensive e-mail correspondence with both of them. This has been very satisfying, because I can express myself a whole lot better in writing. Grace has collected my e-mails to her, that she can look back on, when I´m gone.



My wife, Lindsey, has died, after a short battle with ovarian cancer. Kim, the speech language pathologist, we´ve set up Skype. New year of 2016 was very special for me, because Lindsey and my girls Skype called me at midnight, from the middle of a beach. That feeling of togetherness we shared for a fleeting time, me, in bed, as usual, yet connected by my technology. At such moments, life is worth living, in spite of me having one of the worst diseases known to man.



That segways quite nicely into two machines that go a long way to making my life, not only bearable, but highly enjoyable, like the feeling I described in the previous paragraph. They are my Tobii Dynavox I-Series computer and my Toshiba flat screen tv.



Tobii Dynavox I-Series computer.

This is a modern wonder. With eye tracking, through a pair of little red camera lights, create a small red dot on the screen, which moves around certain interfaces. If I dwell on a block of letters, forinstance, the dot clicks (silently) and the block enlarges, I pick a letter, then the word predict comes into play and gives me four words that I can choose. I described the workings of my computer, in some detail, in my blog. I don’t want to repeat myself, but I want to say what a huge contribution it makes to my quality of life. I don’t know what I´d do without my computer. When my old computer went away to be fixed, I had to use an alphabet board for about three weeks. It was not, in any way, a pleasant experience. The simplest of sentences would be painfully slow. With my computer’s word predict, well used sentences just appear when I start a particular word sequence. I have a speak interface which has a history, storing what was said, in case I want to say it again. I have a filing system where I can store instructions, e-mails, speeches, etc. At the moment, I have 62 phrases that I can call up at short notice. Using Quick Talk, it’s actually possible to converse with somebody, as long as they wait for me to write the sentences or question.



I´ve waxed lyrical about my computer, but it does some remarkable things; I can Skype call somebody with my eyes only. By eye balling arrows on the tv control interface, I can see what tv show is coming up, I can check out programs in the future, get information about the program, just like any normal viewer. I can read e-mails aloud, using the computer’s voice. Facebook is accessible to me, meaning that I can send messages to any of my FB friends, who number in their hundreds. I have a timeline and newsfeed. I can surf the internet (a special disabled version, where I key in numbers to get to the page that I want). The numbers also lead to permanent favourite pages, like Youtube and the dictionary. Although I´m bed bound, I´m in touch with the whole world, which helps a great deal in the quality of life stakes.



I have to talk about the other major help in maintaining my quality of life: my tv. Luckily for me, I live in Canada, where tv channels abound. I try to not watch tv in the mornings, unless there is a soccer game, which I always watch. I still use the tv, but for playing music, on the Stingray channels in the 400´s. My favorites are the Classical Masters, Baroque and Remember the 80´s. That channel reminds me of happier times, when I was physically able. Again, there is an extensive selection of Stingray channels, so I listen to music and write correspondence with my daughters, friends and family, plus I write to my many Facebook friends, former students and of course, this blog.



I told a slight white lie in the last paragraph. I do watch the news, first thing in the morning; usually BBC World Service and CNN. The irritating thing about CNN, is the vast amount of commercials that they show. In an average 30 minutes of programing, they show 14 minutes of advertising. So, programing and commercials, take up almost the same time. Without advertising, CNN would be a good channel. Often, CNN presenters hurry up the commentators, saying “we have to go”, to the commercial break? The most used presenter words are “next”, or “coming up”.



Apart from CNN, we have Turner Classic Movies, named after the owner of CNN, Ted Turner. TCM has provided me with many hours of entertainment, commercial free. I don’t look at CNN in quite the same light.



Another good thing about CNN, is their presidential race coverage for 2016. I´ve been following the race closely this year and I must say, that Donald Trump´s candidacy really scares me. I can’t help but see parallels to Hitler. The racism, particularly against Mexicans and Muslims, the violence at his rallies, threatening riots, if he doesn’t get the nomination. It will be appalling if he, indeed, becomes president, because like Hitler, he might get about 40% of the vote; another chilling comparison. At the same time, I am an admirer of Bernie Sanders, although his ideas are so anti-estabishment, that I doubt whether he can bring his policies to fruition.



As I am talking about the pros of living with ALS, I have to mention my superb care at the Aberdeen Hospital. I have had very few problems with my nurses. When they can, only seasoned nurses are allocated to me. That’s essential, because I´m not an easy patient. I´m on a ventilator, which means that care has to be taken when doing my wash every morning. I have tubes sticking out of my throat, so they have to be careful rolling me, as is done to me during my daily wash.



I have new sheets every day and more often than not, a green canvas undersheet, which is between my body and the air mattress. Under my bum, is a special pad, which is changed every day. I hate to think what state my bum would have been in, if I hadn´t been so lucky as to have an air mattress. I´ve seen horrific bed sores and although I have them, it’s nowhere as bad as they could be. To ward off bed sores, I use a complicated pillow arrangement. That’s another reason that I need nurses that know me. My trach ties are changed every day, because of my drooling, I regularly have my cannula changed (a small plastic tube which fits into my trach cavity, to aid breathing). Not to mention my entire trach, changed every two months and my catheter, replaced whenever it is blocked with sediment. To my knowledge, there’s never been a shortage of these essential items for my well-being.



Every Tuesday, the respiratory therapist accompanies me to the tub room, just in case that I get disconnected. That is typical of the care and attention the staff of my hospital expend on me. Taking into account my rotten luck in getting this disease in the first place, I consider myself very lucky to have my family, sick pay, computer, tv and the wonderful care that I receive at Aberdeen Hospital.



I set out in this entry to go through the pros and cons of living, on a ventilator, with no muscle usage and completely bed-bound. There are many, many cons to my way of life.



The most disarming aspect to my life is that I´m on death’s doorstep, literally all the time. That’s why I´m largely bed bound. My breathing muscles have deteriorated to such an extent, that if my trach tube becomes detached, shortly after, I´m dead. I will die as long as I can hold my breath. Luckily, my trach tube is attached to an alarm called code blue, which sounds off loudly and the nurses come running to my room.



The nurses now check the code blue before every shift, because of this incident. About 18 months ago, I was having a lot of trouble with the computer freezing. As I wrote in my my main blog, this was to do with the actual computer being in the wrong position. With the help of Tessa, the speech language pathologist, I moved the tv screen over and the computer more in my eye line. This solved the problem. The incident happened before I moved the computer. The little red camera lights would just freeze, meaning that I couldn’t use the computer. When you rely on the computer as much as I do, it’s incredibly frustrating. I´m totally helpless.



On one occasion, the camera lights froze, I resigned myself to another period of helplessness, when suddenly, my trach tube jumped off. Now the code blue alarm should have gone off, but my nurse, (who will remain nameless) forgot to turn on the code blue. I heard the muffled squeek of what should have been the loud alarm. To use a cliche; I was staring death in the face, when miraculously my computer unfroze and I was able to sound my computer’s alarm, luckily, a nurse came quickly and put my trach tube back in place. Those next few breaths were the sweetest ever!



So, I´m close to death at any time. I´d love to have more outings, but have no choice, unless a respiratory therapist accompanies me. I just have to accept that the rest of my life will be bed bound, unless they come up with a new stem cell cure.



Another con of ALS is that I can’t stop drooling. The salvary glands keep producing saliva, but my throat can’t deal with it. The problem is so acute, that I have to be trach suction at least four or five times a day, otherwise I´d choke to death. Not only do I need to be suctioned, but I can’t stop slobbering. The saliva starts in my mouth and works its way down my throat, it soaks my trach tie almost every day. The trach tie is situated around my neck, keeping my trach tube in place, velcro secures it. Luckily, some days are not so bad, but on really difficult days, I can feel droplets sometimes running down my neck and back: not very pleasant. Every morning, the nurses put soaker pads under my trach tie, guarding my throat. Inevitably, the next morning, both pads are soaked with saliva. There’s no way round it, I just have to live with it.



There is another rather scary con. I am in my 11th year of ALS, meaning that my paralysis is finally affecting my eye lids. Thankfully, I can still blink, that is vital for me, because a blink means yes and stare means no. The problem arises at bedtime. I have to really concentrate to do the simple act of closing my eyes. It’s really difficult to do this sometimes. I have to roll my eyes up and get my eye lids down three quarters of the way down. Hopefully, that way I can sleep. Snoozing, in the morning is also trying. Because my eyes don’t close, it’s tricky to close them. So, no matter what time, I will open my eyes and that’s it. I have gotten used to this and adapted, like disabled people do. I keep my eyes closed and thanks to my regular doses of morphine, I dream vividly. The dreaming goes on, even if I’m half awake. Time passes very quickly in this state. Like most disabled people, I have found a way to make my bed bound existence tolerable. There is one more thing that I haven’t mentioned; that is when my eyes goop up, as they often do over night. If that happens, I’m in trouble, because my computer only works with only clear eyes. If there’s any obstruction, I really struggle. Just this morning, my left eye wouldn’t open. I was in panic mode, then the eye slowly opened. I immediately called the nurse and asked him to wipe my eyes with a wet cloth.



Another disadvantage of my condition, particularly these days, is pain. Imagine being totally paralyzed and in pain. Not a condition that I’d wish on anyone. My pain usually comes from three sources: my bed sores, cramping, edema and mystery pains.



At one time, bed sores weren’t a problem. In the early days at the Aberdeen Hospital, but as the time advanced, it became my top priority to ward them off. This is achieved by the strategic placement of u shaped cushions. It doesn’t always work. Sometimes the pain is excruciating. There are two spots; the outside of my left thigh and the inside of my right bum cheek. If the pillows are not in the right place, or even if they are, some days the pain is nagging, relentless. On certain days, I ask for extra morphine and full dose Tylenol and the pain is only dulled, but still there. Thankfully, that is the exception, rather than the norm. Still, some days my bed sores can flare up. My bum is like a pin cushion and they’re a major hurdle in my wish to survive for at least another five years.



The edema is not as much a worry. Abnormal accumulation of fluid in cells and parts of the body. That is the definition of edema. I get in phases and my hands can be swollen to twice their size. Usually when the pain comes, it’s in either hand or arm. It’s searing pain, not very pleasant. If I take full dose Tylenol and extra morphine, it only deadens the pain.



The cramping is a byproduct of my body being static for long periods. It usually affects my middle body and is very unpleasant. I can still slightly arch my back, but not on the cramping day. My penis does not enjoy cramp.



There are occasionally mystery pains, able to strike any part of the body any time. I haven’t a clue why they occur, it might be heel, or a sole of a foot. It might be a knee. Most of the time, a rub by the nurse and Tylenol will get rid of the pain.



There are the questions of lack of privacy and helplessness. There’s absolutely no privacy with being an ALS patient. At least they lift me onto a commode for ” bowel care”. I then have to put up with the indignity of my bum being wiped at the end of it. One thing is that you get used to it and the nurses think nothing of it. My penis is exposed every morning and at least four strangers see my penis every week. I’m writing about it, because it still irks me. You have to get used to it, and I have, but not totally.



When I’m propped up with my computer and TV strategically placed so I can use and see it, I feel quite normal. I can say exactly what I want to say, although it takes a bit longer to express myself. I have the newest version of Tobii Communicator 5 , which is very quick. I can do things, like change channels, write and send emails, Skype, surf the Internet with mouseless browsing. I can even call the nurse, with my alarm. Once a day, at about 10am, they put my computer to one side, take my pillows and cushions aside and wash me. I am usually in control of the situation, but to find myself half naked, unable to move a single muscle and having no vocal chords, totally voiceless, helpless. Often, I want to say something to the nurses, this adds to the feeling of utter uselessness. I’m still shocked by this experience to this day. In fact, care, remains my least favourite part of the day.



When I had my Tracheotomy, my sense of smell disappeared. I don’t know if that’s supposed to happen, or whether it was a surgical mistake. As I wrote in my main blog, this doesn’t overly bother me now, but if they come up with a successful treatment for ALS, that’s a sense that I will really miss. I loved the smell of freshly ground coffee, cooking smells, wine appreciation and a host of other smells that enrich our lives. It depresses me that I never get this sense back.



Another thing changed with that operation; the ability to read fluidly. Since the operation, reading has become way more difficult. I seem to have problems with the words to the left of my line of vision. It takes at least twice as long to read the same passage as before the Tracheotomy. I’m not sure if it’s a form of dyslexia, but I now avoid sub-titled films, because I just can’t keep up. At one time, foreign films were no problem. Luckily, my ability to write is undiminished.



I rely enormously on my eyes. They do get tired. The maximum that I can write is three hours. I have to use my eyes for the rest of the day in a variation of tasks, I use my eyes whenever I use the computer. I may have unexpected visitors, in which case, I just soldier on. On such days, I crash at 9pm.



My computer makes my life bearable. More than that, it has an immeasurable effect on my quality of life. With all computers, it goes wrong from time. I’ve had this Tobii Dynovox I-Series for two years and its developed faults: one of the most serious, involves the camera lights. These are the camera lights that monitor my eyes and create the red dot, which I navigate round the box letters and various computer screen interfaces. Anyway, about every two weeks, the camera lights go off. This renders the computer absolutely useless. I am totally helpless without the computer. The way to get the camera lights back on, is the simple matter of tapping the plastic below the screen around the camera lights, when on, are red. Of course, I’m paralyzed and can’t, so I have to tell every nurse, in advance about this. So far, I’ve been lucky, but I dread getting a ” casual nurse” who has hasn’t a clue what to do. If you don’t know me, it’s hard to tell if there’s something wrong. That’s a nightmare scenario that hasn’t happened yet. Nowadays, the camera lights stay off first thing in the morning, but still, it shouldn’t happen. To fix this issue would require the computer disappearing to the workshop for three weeks, which length of time I cannot be without my computer.



There is another problem that I’m coping with as I write this passage. The program that I use has a very good word predict function. However, after two years, the eye gaze has deteriorated to the point where it’s very difficult to lift the cursor off the word rectangle. What happens is that the cursor hits the word below in the rectangle. 99% of the time, it’s the wrong word. I am forever going back to erase.



There are other ” wonky” and ” moody” phases that my computer goes through. Some days, writing is fine, but on certain days, writing is very difficult indeed. There’s no reason for that, it just happens. Presumably, the eye gaze mechanism is extremely delicate and, as the computer ages, this ” moodiness ” increases in frequency. There are also times where, inexplicably, the cursor goes berserk and my struggle to reign it in. Every time it goes back to normal.



Another problem is that my computerized voice cannot be heard at the receivers end. This is because of a technical disagreement between Microsoft and Tobii Dynovox ; the makers of this computer. For some complicated reason, my Skype sound doesn’t work properly. I am going to phone Microsoft disabled desk to see if they will make an exception for me, or change their policy. My daughter, Francesca, came up with a bright idea; that was using the phone and Skype, the trick being pressing the mute microphone button to get rid of the feedback. It actually works, with my computer’s voice being on maximum loudness, I can be heard on the speaker phone. The eye tracking is beginning to show its age. The wonder machine is flawed. Recently, a new battery was put into my computer. The whole behavior of the computer has changed. The eye gaze is that delicate.



I use the TV fifteen and a half hours a day. I say ” use” because I try to write letters and this blog for about three hours, when I listen to Stingray channels, which feature all kinds of music. Apart from that, I try to limit commercials in the evenings. That means a lot of public television. I’d like PBS more if they didn’t beg for money between every single program. At least they show Downton Abbey, one of my favourite series. Knowledge Network, or as I call it, the Repeat Network. They rerun programs 7 or 8 times, sometimes even more. I often watch shows twice, because cleverly, they leave just enough time between repeats, that I forget what happened when originally seeing the program.



The fact is that I can’t avoid commercials until 7pm. I like to watch baseball and basketball. So I extend my submission to the dreaded ad. Unlike most North Americans, I can’t just ignore commercials. They actually affect me and I don’t know how anyone can watch History Channel with five and five. Five minutes programming, followed by five minutes of commercials. It used to be 45 minutes of programming for every hour. On CNN and other channels, it’s half and half. While we are talking about CNN, I watch it every day.



Talking about CNN, I have spoken about the ridiculous level of commercials they show. When I want to see the news, I watch the BBC World Service, when I want to find out the state of the presidential race, I watch CNN. To say that CNN is obsessed with the presidential campaign would be a large understatement. They ignore the cholera outbreak in Haiti, the death of the king of Thailand, instead they dwell in the minutiae of Donald Trump´s sexual exploits, or Hillary Clinton´s email scandal.



Like Chance, in the movie Being There, I live through the TV. I’m a big sports fan and notice that sports channels attract a lot of new car or truck buyers, because in every commercial break there’s a truck or car ad. The worst user of advertising is undoubtedly NBC. They run Golf Channel, which I have seen do five commercial breaks in half an hour. The soccer coverage on NBCSN is disgusting. They have the whole show is ” sponsored” by Volkswagen, the half time by Geico, the match stats by Liberty Mutual Assurance and so on. They even have the temerity to use the score and timing box at the top corner of the screen, as an advertising platform. So, as a goal is being scored, you have a big flashing Toyota sign in the score box. Commercials are indeed, the bane of my life. I see many hundreds every day. I’d like to think that I can now handle them better than I did, so that’s progress.



In conclusion, I’m alive because the pros outweigh the cons. I am alive because I remain the main breadwinner for the family. I am alive because I want to be there as the sole parent to my two girls. I’m alive because I think that if I hang around long enough, they will come up with a cure for ALS. I’m alive because I dare to think that I pull off the great escape. But most of all, I am alive because I believe in life.

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