Parkinson’s disease
In this section you can find out about the experience of Parkinson’s disease by seeing and hearing people share their personal stories on film. Researchers...
The early symptoms of Parkinson’s disease might not seem bad enough for the person experiencing them to think of asking anyone about them. Most people don’t know much about Parkinson’s, and what they do know may be a poor guide to the early stages of the disease.
Some symptoms which people experience before a definite diagnosis are very vague and non-specific. For instance several people described quite long periods when they noticed that they were increasingly exhausted, or noticed that they had become physically or mentally slower, or felt somewhat depressed. Jean was told she probably had chronic fatigue syndrome and to this day does not know whether she did indeed have this as well as early Parkinson’s disease. Elaine also convinced herself that her exhaustion was caused by other things and didn’t to connect this with other symptoms as they happened. Brian noticed that he was becoming increasingly exhausted so he cut down his activities and, at the age of 63, accepted his symptoms could be due to ageing. Stephen did the same at the age of only 43.
People who were very physically active and especially used to how their bodies functioned became aware of a problem when running or in the gym. Rafa started having problems when his leg wouldn’t move properly after a couple of miles running; “You know what to do, you know you can do it, but the leg doesn’t want to cooperate”.
Quite often the next step towards diagnosis would be that someone else, a friend or family member, would comment on a symptom which the person showing it had not noticed. Shuffling was commonly noticed and often treated as a bit of a joke. Relatives noticed Fred’s shuffling and mentioned it to his wife who didn’t tell him until a doctor friend commented on the trouble he seemed to be having walking. When a friend noticed that Sharon was walking strangely she did her best to ignore it until further symptoms appeared.
Another symptom others noticed is the rigidity of expression (lack of movement) in a person’s face – described as the mask. The mask becomes the person’s normal expression – a default position. But it can be over-ridden during social contact, particularly in response to a joke but also when the person in question looks at their own face in a mirror. This would explain why many people have failed to recognise the symptom in themselves. Fred’s consultant asked him whether he had always been so ‘po faced’ and he had no idea whether he had or not. Philip described how his GP had looked at him, and noticed that his face had lost some mobility and that the muscles in his face seemed slightly rigid, and so referred him to a neurologist.
A husband/wife or partner may get the wrong idea about the mask, thinking that their partner has become unresponsive. until it has been explained to them.
Tremors are one symptom which many people associate with Parkinson’s disease. Rex noticed an ongoing tremor in his right hand and his GP immediately referred him to a neurologist. Elisabeth on the other hand described a sensation of having one hot and one cold leg, and sitting on a beach watching her leg shaking, but not knowing what this might mean. When Judie developed a tremor in one hand her GP obviously guessed what it probably meant and referred her to a neurologist, but she continued to think it was due to a trapped nerve.
Many of the people we interviewed had been to their GPs about unexplained symptoms only to be given a variety of alternative explanations. Sometimes this was frustrating because they felt that they knew something was really wrong. Geraldine’s GP told that the change in her handwriting at the age of 42 was caused by carpal tunnel syndrome related to her menopause.
In this section you can find out about the experience of Parkinson’s disease by seeing and hearing people share their personal stories on film. Researchers...
The process of managing the diagnosis and treatment of illness in the NHS has always been divided between the primary care team (the GP) and...