Before being diagnosed with ALS (Amyotrophic Lateral Sclerosis), an autoimmune disease which affects the nerve cells in the brain and spinal cord and unfortunately makes them deteriorate, I was your typical university student: I hung out with my friends and studied Physics, which I found very easy, so naturally, I didn’t study much and did very little work. Being diagnosed with ALS, however, changed everything. When I was diagnosed at the age of 21, (which I later found out was early as most people weren’t diagnosed until their late 50’s), it was a real shock to me. After the initial diagnosis and being told that the disease was incurable and that I was likely to die in a few years, I began asking myself questions such as “Why should this happen to me?” and ‘What did I do to deserve this?”. While I was in hospital, there was a boy who I knew by sight who had leukaemia. One night, he died, which wasn’t pleasant. Since he was opposite me, I clearly saw the pain and struggle he went through. He took several hours to die, which was cruel, but at least he wasn’t in any pain anymore. After I witnessed his death, I realized there were people in worse situations than mine and at least my condition didn’t make me sick. Now, whenever I feel sorry for myself or dwell on how bad my situation is, I remember the boy with Leukaemia, who fought to live.



It all began when I was in my third year at Oxford. I began to notice that I was becoming very clumsy and dropping things for no reason. I fell over several times as well. It was not until I was at Cambridge a year later, that my father noticed something was wrong and took me to our family doctor for a diagnosis. From there, I was sent to a specialist and I went into hospital a few days after my 21st birthday to have some tests run. I was in for 2 weeks, during which I had numerous tests performed on me, as the doctors tried to work out what was wrong. The tests included getting a muscle sample taken from my arm, getting some special dye injected into my spine (which really, really hurt!) and watching it moving up and down with the movement of the bed and getting wires stick into me. Even with all the results, no one could tell me what was wrong, apart from saying that it defiantly wasn’t MS. I soon learned from listening to the doctors discuss me that they expected whatever it was to get worse and there was nothing they could do to help, except give me vitamins, which they doubted would make any difference. I was afraid to ask for any details as it was clear to me that they were bad. I began asking myself questions, trying to work out how to get on with my life, now I had this disease. Since I didn’t know how bad it would get or how rapidly it would change, I didn’t know the answers to these questions. The doctors told me to go back to Cambridge and continue my research. I did, although I wasn’t getting very far, not having a very mathematical background, and I figured that I might die before I even got close to finishing my Ph.D. Before my diagnosis, I’d been feeling bored with life, although once I was diagnosed, I began to appreciate it a lot more than I had in my life. I began making progress in my research and suddenly, life was looking brighter, especially with the engagement of Jane Wilde, whom I’d met around the time of my diagnosis. Not only did it give me something to live for, it also made me realize that I would need a job if I were to help support us when we got married. With that in mind, I applied for a research fellowship and I was accepted, to my surprise. Being able to do research at Calus, took care of my present unemployment and I was lucky to have chosen research in Theoretical Physics as it was one of the few areas of study which made allowances for my disability getting worse. As a result it didn’t end up becoming a huge problem or inconvenience. Thankfully, my reputation as a research fellow in the area of science increased at the same time that my condition worsened and so people were more understanding and willing to grant me a position where I could research and not lecture.




There was also the problem of housing. Fortunately for us, we were able to find a house that could accommodate my growing needs. As Jane was still studying at Westfield College, London, when we married, we had to find a place where I could manage on my own and still be safe while she was away in London during the week. It also had to be close to most places as I couldn’t walk far on my own. When I tried asking the College for assistance, the bursar (person who was in charge of the college finances) said that it wasn’t their problem if I couldn’t find housing. We put our names down for a group of units, but when we got back from a trip to America, they still weren’t available. To help us with our accommodation, we were offered a room in a hostel reserved for graduate students. The graduate students didn’t pay much to live there, but since there was two of us; we were charged a higher fee. We only stayed for 3 nights. We then found a small house close to my department, which was owned by another of the colleges and had been previously lent to another researcher of that college. Since he had moved out, he leant it to us for the remaining 3 months of the lease. During that time, we found another house on the same road, which was empty, the owner was contacted and we moved in. We asked the college for a mortgage on the property, but they refused and so we finally got one given to us by a building society and my parents paid for us to fix up the house. We lived in that house for a further 4 years, by which time; I was having trouble climbing the stair. Luckily for us, the college appreciated my hard work and so offered us a ground floor apartment in a house they owned. This was perfect as it had wide doorways, large rooms and had a garden which was maintained by the college gardener. It was perfect for our 3 children. Even better, it was close enough for me to be able to get to the university.



Prior to 1974, I was still able to feed myself and be able to get in and out of bed with Jane’s help. She was able to help me and care for our children without assistance for a couple of years, until it all got too much for her. We organized one of my research students to live with us free of charge, who took up a lot of my attention in exchange for helping Jane care for me. In 1980, the system was changed so that community and private nurses came in morning and night for an hour or two to help. This was to last until 1985, when I caught pneumonia and I had to have an operation to remove my trachea. After this, I required 24 hr care. This was possible thanks to several organizations. Before the operation, my speech was steadily worsening, but at least I could still communicate. Problem was, only a few people who knew me well, could understand what I was saying. My scientific papers were written via dictation to a secretary and my seminars were given with the aid of an interpreter, which was helpful as my words were repeated more clearly. However, the operation caused me to lose my ability to speak completely and the only way for me to communicate was to use a spelling card, also known as a communication board. It was difficult to carry on a conversation this way, but impossible to write a paper as it would take hours. Thankfully for me, an expert in computer software, heard of my problem and sent me a program called Equalizer. This helped me to communicate more easily. All I had to do was select words from a series of menus on a screen via a switch in my hand. Apart from pressing the switch, it can also be operated with either head or eye movement. A small portable screen and speech synthesizer have since been attached to my wheelchair so where ever I am, I can communicate. A person’s voice is valuable, so if people hear a slurred voice, they think of you as being mentally disabled as well. The program prevents this from occurring.



I have had ALS for most of my adult life. However, it hasn’t prevented me from living. I could choose to wallow in self pity and choose to do nothing, but what would that accomplish? There is hope.