Malcolm Macdonald s Arthritis Journey

Transcription

1 Appendix Malcolm Macdonald s Arthritis Journey Adapted from an interview conducted by Dr A. Turner The following case study has been selected to provide insight into one man s arthritis journey from development of symptoms, to attaining a diagnosis, through to current self-management. Malcolm s story is based on an interview and the words used in the narrative are those used by Malcolm to describe his life with OA. Direct quotes appear in quotation marks. Malcolm was aged 51 years at the time of the interview. He was divorced and an ex-professional footballer who represented England during his playing career. He was known as Supermac, the scoring ace of the seventies. He now works as a football commentator and lives in the north of England. Both of Malcolm s knees are affected by OA, and he has had one knee replaced. In addition, Malcolm has another longterm health condition, asthma. Diagnosis, Disease Course and Treatment Malcolm does not recall being given a diagnosis until several years after the onset of symptoms. He felt that doctors were reluctant to discuss his knee problems. He remembers talking about the pain and discomfort in his knees with doctors but felt that they only talk about the weather and would not discuss his condition. He was relieved when finally doctors had the courage to tell me something I d known all along : his GP told him that he had OA. His surgeon first used the word trauma in 1977 during an explanation of the effects that trauma can have on a joint. Malcolm recalls being told Living with Arthritis Julie Barlow 2009 Julie Barlow ISBN:

2 Appendix: Malcolm Macdonald s Arthritis Journey 221 that the body can accept and recover from one trauma; it may even get away with two traumas, but in Malcolm s case a third trauma was too much and resulted in more lasting damage. Malcolm well remembers the day he saw the surgeon who did a great deal of work for the Football Association. The surgeon took one look at Malcolm s X-rays and said that an operation was called for immediately. Malcolm felt that, at last, someone accepted his condition and did not accuse him of being a baby. Eventually, he had his left cartilage removed. Since this time he has not been able to straighten his leg. A further operation was followed by an arthrogram, which showed a little speck of damage that sort of concertinaed its way throughout the joint. Malcolm believes that the rubbing of bone on bone in the knee joint, led to the bones flaking away. Malcolm was still playing professional football at this time. He had a further operation to remove the growth. Malcolm reports that the surgeon left the attachment in his knee in the belief that it would encourage new cartilage to grow. The reality was that a pencil-like piece of gristle grew in an uncontrolled way. Malcolm believes that this was not put in his medical records. After this operation, Malcolm managed to play one game but felt it was no good : he could not cope with demands of playing professional football and was forced to retire. The pain and discomfort became so bad at one stage that painkillers had no effect, Malcolm felt that doctors would not discuss his condition and would not prescribe any different medication to help him to cope. At this time, Malcolm began to resort to drinking scotch as the one thing that would guarantee him a night s sleep. By now, Malcolm was no longer part of a football team and was receiving health care via a GP. He found this to be a totally different experience compared with the approach adopted by the medical teams working with football clubs. He feels that the aim of football medical teams was to get players fit for Saturday regardless of any long-term consequences and regardless of the cost of medication. When he became part of Joe Public, Malcolm believed the approach to his condition became very different and he reiterated that doctors did not want to discuss his condition with him or to prescribe expensive medication. He felt he had to find his own way to survive, to get through the ordinary day. Malcolm spent eight years getting about one hour of sleep per night, but he feels that the problem is much deeper, and is not just about getting a good night s sleep. He feels strongly that arthritis affects you mentally.

3 222 Appendix: Malcolm Macdonald s Arthritis Journey Your eyes sting because all you really want to do is sleep, but you become a television addict just to while away the long hours of the night. He had a knee replacement three to four years ago. Malcolm is currently not on any prescribed medication because nobody will give me anything. He is trying herbal supplements to see if these improve his condition. Attributed Cause Malcolm attributes OA to playing football with injuries and to being a sprinter, which meant that his joints received an absolute pounding. Unlike many other players, Malcolm refused cortisone injections whilst playing because he knew that being able to get back on the field of play quicker may not be the long-term answer. However, he recalls observing other players disappear five minutes before football games started and again at half time, and presumes these players were given injections to help keep them playing. Malcolm feels that his body shape did not help his risk of injury or recovery. He claims to be hollow-backed, narrow-waisted (compared with his chest and hips), and also to be bow-legged. He feels these factors placed a different kind of stress on his knees and ankles. In addition he was a sprinter, a skill that Malcolm believes places even more stress on joints from the hip downwards. He likens his body to a machine that sooner or later will give out under that constant pounding. Getting on with Life After retiring from professional football, Malcolm has worked as a sports commentator. This has proven to be difficult because of the physical effects of OA. Press boxes in football grounds tend to be down lots of stairs and are very confined in terms of space. Both of these facts cause problems for Malcolm. Even when he can get down to the press box, he sometimes is not able to sit comfortably and spends the whole time commentating through gritted teeth whilst trying to bear the pain. When Malcolm meets up with old playing colleagues, they discuss how to cope with life. Thus, Malcolm knows that he is not alone in suffering from arthritis-related injuries sustained whilst playing

4 Appendix: Malcolm Macdonald s Arthritis Journey 223 professional football. For example, one old playing colleague (in his early fifties) has not been able to work for the past 10 years because of OA in his back. This man s children have now left home but he is still struggling financially and is not able to just enjoy his later years. Although Malcolm and his colleagues succeed in attending reunions and other events, there is a lack of spontaneity about their lives in that all activities must be planned for and may have an adverse effect on their wellbeing. If Malcolm plans to attend an event, he has to leave the four days before the event clear so that he can prepare himself physically. Malcolm uses a mind over matter approach in trying to cope with his symptoms, detaching from his body, away from the part with the problem. He believes this approach works to some degree, but when you find yourself doing this all of the time, 24 hours a day, that is when you need help and there is likely to be breakdown. Malcolm can now only sleep on his front with his foot (same side as knee replacement) over the edge of the bed. He feels that his right knee is like a 36 hour warning of bad weather. Malcolm s main fears regarding his OA are that the functional limitations and pain will worsen and he will not be able to walk to his car or drive it, and thus his freedom would be severely curtailed. Regarding the latter, Malcolm feels that this would impact on the normal, social things of a family. He finds lack of mobility to be very frightening and attributes his second divorce to this. He feels that arthritis becomes the focal point of one s life, the centre of your universe, and that it is very difficult for partners and family to understand, especially where the condition is not visible: It becomes very difficult for other people to live according to it [arthritis]. They can t see it, they can t feel it, and it s completely intangible. You can have all the plans in the world but if you wake up one morning and one of your legs just doesn t want to work everything has to be changed. The only visible sign of OA that Malcolm mentions is the creak his knee gives when he moves, and yet if he has difficulty walking this must be obvious to those around him. He attributes the creak to a piece of bone that is floating in his knee joint. Malcolm has linked the creak to being able to move easily the following day; thus when he does not hear it, he expects moving to be difficult.

5 224 Appendix: Malcolm Macdonald s Arthritis Journey Malcolm feels that the general public is naive about arthritis and its effects. He has difficulty keeping up with friends and acquaintances, even if the activity is simply standing in a bar. He no longer offers an explanation as to why he cannot join in such activities. Instead, he prefers to spend time at home where he can do funny movements if needed. In addition, he can sit with his feet up and find a comfortable position without causing disruption to other people. He admits that arthritis has caused him to become somewhat of a recluse. Despite the obvious costs of being injured whilst playing professional football, Malcolm would not change any of his life. In spite of the pain, I got to the top in football, I had the most wonderful few years. It still brings me work to this day. If I had been warned as a 14 or 16 year old kid this is going to be your future after football, I would have still done it. He believes that the warning should go to those in control of players, to have respect for their future. He cites medical teams, coaches, managers and boards of directors as those whose duty it is to become as informed as possible medically and then to inform the players. When you re in your peak fitness in your 20s, you think you re going to be like that forever. But middle age, it seems a million miles away. You feel as if you can carry 2 or 3 injuries, get away with it, but it takes its toll. Commentary Malcolm s story illustrates the risks faced by professional footballers, for whom performance on the day is the overriding goal. He appears to have had a confusing time in terms of contact with the medical profession in the early years following disease onset. He felt that his reports of pain and discomfort were not taken seriously to begin with. It is acknowledged that Malcolm experienced problems in other areas of his life (e.g. business) after retiring from professional football. Nonetheless, the pain and discomfort that he suffered were very real and led to dependence on alcohol as a means of coping. Malcolm recognises that the effects of OA are not limited to the physical body but can adversely influence psychological wellbeing, social relationships, working life and leisure pursuits. Interestingly, and despite a lack of formal

6 Appendix: Malcolm Macdonald s Arthritis Journey 225 psycho-educational intervention, Malcolm uses distraction as part of his self-management repertoire. Also evident in Malcolm s story are the lack of spontaneity, the need to plan for events and activities and the determination to resist disruption to one s life, even at the cost of increased discomfort and pain. The unique aspect of Malcolm s story is that he does not regret his playing career despite attributing playing whilst injured as a contributory factor in the development of OA. This situation accords with the results of studies by Turner et al. (2000, 2002) referred to in Chapter 2.