February 24, 2010

UK: Professor Mark Cato reveals "Why I'm dying to live"

. LONDON, England / The Telegraph / Lifestyle / Health / February 24, 2010 When law professor Mark Cato was diagnosed with motor neurone disease, he started a popular blog detailing the frustrations of daily life - and the inventions he came up with to triumph over the cruel wasting disease. Here are selected extracts from his heart-rending online diary. Professor Mark Cato Photo: Masons News Service By Professor Mark Cato, with an introduction by Cassandra Jardine In April 2008, Professor Mark Cato was diagnosed with Motor Neurone Disease and told that he might have only 14 months to live. Faced with this deadly illness, Cato – aptly named after the great Roman stoic – did not turn his face to the wall. A year ago, he began a blog that is “more about living than dying”; a diary of the frustrations and triumphs of daily life with this cruel wasting disease. With its combination of serious discussion, jokes and anecdotes about the inventions he has designed to help him overcome his physical problems around the house, the Dying to Live blog (www.dmarkcato.com) has attracted some 200,000 readers, garnering a following among those who believe in living “every moment of every day”. Cato – never happier than watching cricket with a glass of champagne in his hand – is an extraordinary man. Having worked as a chartered surveyor until his late forties, he trained in law and became an Arbitrator. For the last 25 years, he has practised, lectured and written on resolving property disputes. Aged 75, from Saffron Walden, Essex, he holds a professorship in China and is founder and president of The Arbitration Club. After a sickly childhood in which infected tonsils prevented him from playing games, his passion for a wide range of sports is equalled only by his fondness for a good lunch with old friends. A decade ago he suffered from prostate cancer, which he has also blogged about with searing honesty, but he learned to live with the consequences. Now, helped by his wife Alice – “my lovely” – and his children and grandchildren, he is grabbing what is left of life with both hands – even if those hands are no longer working as well as they once did. April 2009 I went up to London today, to have lunch with my nephew. Unfortunately the trip started badly. The train came into the station at Audley End, I was the last to leave the waiting room and was unable to open the door quickly enough – it was just too heavy. By the time I managed to get the door open the train was about to depart. In my anxiety I dropped my bag, spilling out all the contents. To compound everything I then tripped over them and fell flat on my back. The kind man who stopped to assist me said he saw my head bounce on the concrete platform. However, no harm done. By this time, though, the train driver, possibly fearing he would be delayed, closed the doors and pulled out. I had to wait half an hour for the next train. Walked around the golf course and lunched with my old mates. I introduced the members to my new cigar holder. I had it made from a 15in-high wooden toilet-roll holder with a spring clip on the top. I bought a cheap plastic holder in London the other day, and jam it into the spring clip and can therefore smoke without using my hands. I only smoke two small cigars each day but I do enjoy one with a drink after walking around the golf course. May 2009 I managed Lord’s quite well. I now tend to keep my travelcard in a plastic pocket hanging around my neck, as I find it almost impossible to get my hand in my pocket to produce it. One thing I did learn today was the easiest way to eat a sandwich. My weakened arms mean that I have to use both hands to get it to my month. I now have the sandwich chopped up into small bite-size squares, stab it with a fork and, with the assistance of my wrist splint, can manage with my right hand alone. July 2009 It would be totally dishonest if I did not admit that I am anxious much of the time about my condition, most particularly, I suppose, in bed at night. One lies there knowing one is going downhill, but how fast? Beyond that, I do not believe that I am seriously depressed. The worst aspect of this condition is the overall sense of weakness and increasing frustration in being unable to do things with one’s hands. I can still manage my laptop with my hands, using the middle finger of my left hand to operate the mouse. In addition, I have a joystick mouse. When the hands go. I shall have to revert to a foot-operated mouse. I tried a bath a couple of weeks ago. It was a hot day and I was sweaty and thought it might be rather fun. Unfortunately, I found I could not get out, despite struggling for up to an hour. I was simply too weak to lever myself out. I even let the water out in case I landed on my face and drowned. I had visions of Alice arriving home and finding me sitting there, blue with cold. Fortunately I had taken the mobile telephone up with me. I dialled the directory enquiries for my neighbour’s telephone number and found her in. I never told Alice. She would kill me if she knew. On the whole, I would say that my lovely wife and I are managing, but for how long? August 2009 My back scratcher, which I have had bent to a 135° angle as my arms are not strong enough to reach behind my back, was returned to me today. The ideal angle, for someone in my position, would be probably one closer to something like 30°. I shall experiment. September 2009 Decided to fill up with petrol. Unable to lift the lever releasing the petrol cap and too weak to squeeze the pump, I asked a kindly looking customer for assistance. Unfortunately, between the time of asking and his coming to assist, I managed to topple over backwards. After this kind gentleman had helped me up and filled up my tank, I got him to push in my safety belt and turn the key – both of which I find now almost impossible to do myself. I’m sure he was wondering whether I should be allowed on the road at all, or whether he was even on Candid Camera. [In November, Cato’s wife insisted he stop driving.] Alice, my lovely, usually puts out my clothes the night before, and helps me to dress, although I can usually get on my own underpants. Certainly, buttons are beyond me, but I can make a shot with my trousers, having had all the zips fitted with a keyring; the clips and buttons removed from the top and substituted with Velcro and a cloth loop which I can usually drag across. All of my ties have been pre-tied and just have to be slipped over my head and pushed up to the collar by Alice. If I am going to London or for an important appointment, my lovely even finds me a fresh rose for my buttonhole, which it has always been my habit to wear. October 2009 I have worked out how to take my pills – by licking the 'frozen’ forefinger finger on my left hand and picking them up that way. Things like pieces of chocolate or segments of orange I nudge on to the back of my left hand and eat them from there. It’s rather like taking snuff. November 2009 My lovely’s antique four-poster bed is rather high off the ground. I’m now using a stool to get in. I know my lovely is keen to replace it, but as I have slept in it for the best part of 50 years, and my darling daughter was born in it, I am loath to get rid of it. I find it virtually impossible to pull up the duvet around my neck which can be a little annoying when it’s chilly. Even the lightest down pillow is too heavy for me to lift other than between my two-fisted hands. I have already given my lovely authority to sign my cheques so I am at her mercy over my money. I just hope she doesn’t run off with the milkman! December 2009 On Friday, I went to London and had lunch with two old friends in a rather smart London restaurant. My hosts helped me don my apron, fitted my two wrist supports – one with a shooter, another little gadget I designed and had made, and (a new 'invention’ of mine) a wipeable cloth sleeve for my left arm. I thought up this one because I’m having difficulty raising my right hand to my mouth with a spoonful of food. However, if I assist the arm using my left one, I can feed myself – thus the need for the sleeve, to protect my clothing, against any food which spills off the spoon. Regretfully, I can no longer wrap presents so my lovely has to wrap her own and indeed write the cards that go with them but using my own words. Although I can no longer write legibly and therefore can no longer jot down notes during the night, I found an excellent substitute in a Dictaphone on which I have had glued some pimple material to enable me to operate the switch. January 2010 Well, we’ve made it to another year. Traditionally this is the time when one makes New Year resolutions; dieting, drinking less, exercising more, etc. I had no intention of doing any of these things, instead I intend to pursue last year’s policy of carpe diem. February 2010 Went to London by train today to see my stockbroker. I had great difficulty getting into the taxi. A long struggle ensued to get me on to the seat, during which the taxi driver sat impassively, distaining interest. He had seen it all before, it seems. Once seated, I explained to him that I was not a legless drunk but was suffering from MND. [rc] * Read more from Dr Mark Cato’s Dying to Live diary at www.dmarkcato.com © Copyright of Telegraph Media Group Limited 2010