July 2017


Three weeks in July . This means something to people who follow the Tour de France . I have watched large amounts of this year’s , and it has been good to see the sport and France . My overheating problem has been terrible , and I was inside next to the fan for the last six weeks . We are trying different meds , but they are not working so far . I now experience shortness of breath in the evening . The air creates a groaning sound , and I have to make an extra effort to get the air down . I did hope that this would never happen . I don’t like it at all . I use a ventilator for half an hour every evening . I am grateful for the ventilator . I often think about the quarterly appointments at the neurological hospital . Is it worth going when there is no cure ? However , it is worth going because they help you through the stages of the illness ( PEG , NIV ) , and act as an influential voice to get things done . I am aware of people who are no longer with us , where things would be different if medical support had been there . Thank you to Lisa , who comes to the appointments . Phil paid us a last minute visit for a couple of days . Basketball competition with Sebastian renewed and Valentina now a winner too . I enjoyed talking with him very much . A good friend , for whom nothing is too much trouble . Something interesting happened during his stay , both related to the resolution of problems , which were causing frustration . The solution to each had been in front of me all the time . I have been having difficulty capturing the letters with the eye gaze computer . It has been very disruptive to getting things I need . I have asked for a new stand , which I hope will come soon . With Phil in the room , and me becoming annoyed not being able to talk much , I thought to investigate the different keyboards available . I found one where the keys are much bigger . It has improved things and was there all the time . Other tasks with the eye gaze still take much longer . Secondly , I changed the drinking tube , and found it difficult to get water through the new one . The effort needed to suck the water is of course affected by the bottle’s height relative to that of my mouth . I had the idea to hang the bottle on the bar where the computer is attached . This bar is higher than the previous location , which was behind me . The other benefit is that I now know how much water I have . This solution had also been there all the time ( actual deployment has shown poor results , including a flood at church , which Wil kindly dried up ) . I looked at Phil , he at me , and we laughed . I have not been out of the home much recently , so today’s trip to Bunnings Warehouse was a shock . People buying for their home , building , renewing . These are not words I use . Sebastian and Valentina skillfully drove me around what seemed like an illusion . You might not be familiar with Bunnings . It is an excellent home improvement store from Australia . We were very excited about it , not least because it brought back memories of buying a barbecue and many other things from the store in Chatswood. I don’t like having an illness , which I can’t get rid of . Sometimes , no most days , I think that this is me now , and the richness of my life is gone forever . I have been away from home for a year now . I don’t have the frustrations I suppose , but I can’t tell you how I miss it all , and I feel our family has missed me . We have good times together , I am looked after and that is good . I rely on the carers and nurses ever more . To those who walk into my room with common sense , who think , who have skill , who want to learn and who care , thank you very much . To those who don’t , you probably know it , so help us all by finding alternative employment . Training and communication key . One day I will write my thoughts about the care industry , but for now it’s clear there are problems with the market for staff , good staff . I have a dream to travel to Germany with my book , which I hope takes off . At the moment , I would love to have someone to help me get out a little more . Ambulance driver , nurse , looking for something different and extra cash . Open to ideas and offers . I am pleased to say that two hundred or so copies of Die Kleine Backstube are being read or used for an elegant table mat . I have had some encouraging stories . A woman at church , who I don’t know , told me she is on chapter three , using her old German and a dictionary , and is enjoying the story . If I can have this replicated around the world , young and old , that would be fantastic . If you have read it , I would love to have your review on Amazon . The next project is to publish The Fantastic Race as a book , at the request of Sebastian . The audiobook has received some great reviews , not least because it’s told by the brilliant Sophie Aldred , and her incredible voices . It lasts just one hour – do search for it on Amazon . I always prepare a summary of how things are going , for the consultant . I wrote that I am proud of how our family is doing . By now , you will have realised that the larger keyboard does not have a return key , and that the punctuation problem is unresolved .


Author: Andrew Knowlman

I am a 50-year old father of two children, married to Jane. I live in Hertfordshire, UK. I was diagnosed with Amyotrophic Lateral Sclerosis in April 2015.

One thought on “July 2017”

  1. I can imagine you and Phil laughing at church causing a mess! That’s a different kind of richness. But how my heart aches with you. I send my love from across the pond. You continue to be in my thoughts and prayers.

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