Parkinson's disease
Early symptoms of Parkinson's disease
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.
Others had noticed David's shuffling long before his Parkinson's disease was diagnosed.
Others had noticed David's shuffling long before his Parkinson's disease was diagnosed.
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But then another thing that I remembered was where I worked I’d got this nickname of shuffler and I really didn’t know why. I didn’t know what that was about or anything it was just I just thought it was something people, you know, decided they were going to call me that but it dawned on me afterwards that I was probably not walking properly for quite a long time before I was diagnosed. So that I picked up this nickname of shuffling because I tended to shuffle more than normal which annoyed me because I was a soldier and I, you know, used to pride myself on being upright and walking properly and etcetera but. So that was probably six or seven years before I was diagnosed that that happened. And with hindsight again I can see areas of my life where my co-ordination wasn’t as good as it had been previously but I’d just put that down, you know, to to middle-age and getting a bit older and. But apparently I, you know, I don’t think it was, it was probably the early signs of Parkinson’s.
Steve ignored several symptoms till his running speed suddenly plummeted. His wife and running colleagues had realised something was wrong before he admitted it to himself.
Steve ignored several symptoms till his running speed suddenly plummeted. His wife and running colleagues had realised something was wrong before he admitted it to himself.
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Well, from the word, basically from the word go, I was working at BMW at the time. Which I’d been there 30 odd years, well not for BMW, but Rover, British Leyland etc etc etc, and I started noticing that my arm was shaking and I was dropping tools and things like that and then, at the same time I was running, I used to be a fast runner, and all of a sudden, virtually overnight I just decreased and decreased, and they were sort of telling me to move my arms and I just couldn’t. So I knew something was wrong then, and about a week or two later I went to my doctor who then referred me to the hospital.
Then about a month, a month or two later, I got the appointment through and I went down there and I didn’t, when he actually told me that I was, had mild Parkinson’s I didn’t sort of, I didn’t sort of grasp on me, until I got home and I told the wife, and she said, “well I knew, I suspected it anyway.” So did all my running colleagues.
Kevin was totally taken aback when a student doctor, watching him walk round a swimming pool while on holiday, suspected he had Parkinson's disease.
Kevin was totally taken aback when a student doctor, watching him walk round a swimming pool while on holiday, suspected he had Parkinson's disease.
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Two years ago this June we were on holiday in Turkey and I was sitting round the swimming pool in the hotel and, a young student doctor came up to me and out of the blue he said to me, “I’ve been watching you, I think you’ve got Parkinson’s Disease.” And he proceeded to examine me by the pool. And I was, obviously because I didn’t believe him and I was quite shocked, and he examined me and he confirmed that he, he thinks I should see me doctor when I come back to England because he was pretty convinced I had Parkinson’s. He was in his final year of medical college. That ruined the rest of the holiday because we were there for two weeks and that was the second day.
I think that his diagnosis was based mainly on watching me walk around the, the pool area, the slowness. And then obviously by the standard examination practice that he performed.
Fiona's husband had already mentioned having difficulty controlling his arm when washing his hair. She then noticed one arm didn't swing when he walked.
Fiona's husband had already mentioned having difficulty controlling his arm when washing his hair. She then noticed one arm didn't swing when he walked.
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Well thinking back the first time [my husband] mentioned that he’d noticed something was wrong he said when he was in the shower he felt, it was different the way he was washing his hair. He couldn’t reach up properly and, but he didn’t know what was the problem he said he felt it was, he was disconnected somehow he said it was almost as if he couldn’t do what, what he wanted to do. Couldn’t really explain any reason for it, didn’t, mention it again for a little while, and then he mentioned it again, this feeling of being disconnected with his left side. He’s the sort of person that never goes to the doctors, but he said, “Well, you know, perhaps I should go and see what, what the problem is.” So again not really too concerned so he made an appointment and then, I can remember just before he went for the appointment we went to the seaside for the day with the family, and I was sitting on the beach and he walked back to the car to get something and it, as he walked back to the car it struck me how when he was walking along his left arm didn’t swing. He wasn’t walking as naturally perhaps, you know, as other people. So anyway I didn’t say anything to him and we went along to his GP, had a chat with him and his GP said, “I’m going to refer you to a neurologist.”
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.
Change in handwriting is a common early symptom which people notice themselves. Brian had various symptoms, his right side was stiff, he was limping and walking with difficulty. He began to worry that he might have multiple sclerosis (MS) or a wasting disease. But most peculiar was the fact that his writing had got smaller and for some reason he found it particularly difficult to make w’s. Jean described how her handwriting would start out big and then get smaller until it was hardly anything. Tom’s first clue that something was wrong was when he was writing a postcard to a friend and found himself suddenly brought to a halt in the middle of writing a name and could not complete it. Helen’s GP (see Getting the diagnosis of Parkinson's disease) guessed her problem when she told him that she was having problems putting a key in the lock or using her computer mouse.
Judie noticed that it was difficult to drive or change gear. Kevin found it difficult to control the toothbrush to brush his teeth. David developed a tendency to fall over when running and then became unable to tap in time to music so he decided that it really was time to see a doctor. Angela noticed pains in her shoulder, hip and knees and Ann started to find it hard to do the ironing.
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.
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.
Natalia had difficulty persuading her GP that her symptoms were not just delayed reaction to the loss of her husband some years before.
Natalia had difficulty persuading her GP that her symptoms were not just delayed reaction to the loss of her husband some years before.
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My husband died in 1995, I think it was about 1997 that I was diagnosed with coeliac disease. But then I continued to be a bit weak. And then I noticed that I was becoming very clumsy, I was bumping into things. And one day a colleague was walking with me and he said, “Why are you walking in that silly way?” So I obviously had a changed gait. I hadn’t really noticed it particularly, but I did. And then later on I found that I couldn’t control my writing. My writing was getting smaller and I went to the doctor for, for various tests. Well, I actually went to the doctor and my GP didn’t think I had anything wrong with me, because she thought it was all due to my bereavement that I had these symptoms. But I knew that there was something wrong.
Anyway so I had this altered gait. I can’t quite explain it, but I wasn’t really walking straight. It was as if my centre of gravity was in a different place, was pulling me away. So I wasn’t walking properly. Then I had this writing. It was becoming more and more difficult to control my writing and I went to the hospital for various tests. I wish I could remember the name, but I can’t remember the name of this test on your brain. But anyway the tests were, were fairly negative.
But then I was reading a book by Jacqueline du Pré, an autobiography of Jacqueline du Pré, and it said, talking about her father she said, “Then my father’s writing began to get smaller and he was diagnosed with Parkinson’s.” This was the first time I had assimilated the idea of Parkinson’s to my, my condition. I hadn’t thought of Parkinson’s.
Gaynor tried to get someone to explain the problems she had when brushing her teeth and with her writing.
Gaynor tried to get someone to explain the problems she had when brushing her teeth and with her writing.
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I first suspected about four and a half years ago that something was wrong because when I was cleaning my teeth I felt I didn’t have the same control over the toothbrush and then I noticed my handwriting was getting quite poor. I thought it was because I used the computer a lot but, you know, that it wasn’t that. And my arm and my shoulder were quite painful persistently. I went to the GP several times and they said it was a frozen shoulder and it would go away, and it didn’t. And so I went to the physiotherapist and I told her that my arm didn’t feel right as well, and I think she suspected that it was something more than just the frozen shoulder, and by this time so did I because having worked with older people in my job. There was all sorts of possibilities and things going through my mind that it could’ve been. But I tried to think, ‘no that it wouldn’t happen to me.’
Well I went to another GP, even after seeing the physio and she said it was a frozen shoulder and if it didn’t get better they would try an injection. So another few weeks went by. Went back to the physio and she said, “Well go to this other GP who’s got an interest in neurology”. So off I went and he, within [clears throat] a couple of minutes he, you know could tell and the last thing he did was make me walk towards the door and I didn’t swing my left arm. And he had a student with him as it happened and I could hear them sort of talking to each other and he just came out and he said, “I think you’ve got Parkinson’s”. And it was such a shock even though I knew it was going to be something, I even thought it could’ve been something worse.
The symptoms in Parkinson’s disease may begin slowly, spread over several years. They may not always be present. Mari remembered that she used to be cross when Humphrey failed to appreciate the scent of a flower she was pointing out to him or the smell of the food she had cooked. It was not until after he had died that she discovered that this was a symptom associated with Parkinson’s disease. While some people didn't mention what they saw as 'trivial' symptoms to their doctor for fear of being labelled a hypochondriac, others thought their symptoms might all be explained by advancing age or other things in their lives.
A few guessed that their symptoms might be signs of a serious disorder and even made their own diagnosis of Parkinson's disease before consulting a doctor.
Humphrey began to realise that his symptoms probably added up to something significant and searched on the internet for an explanation.
Humphrey began to realise that his symptoms probably added up to something significant and searched on the internet for an explanation.
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Well, the first thing I noticed was my typing going quite badly wrong on my laptop computer. I was getting extra spaces between words and sometimes in the words themselves. So I got a new laptop, and it went on happening. At which point I began to think it might be me rather than the machine. Around the same time my walking began to get very stiff, a bit like Groucho Marx, and I didn’t connect that with the typing but it was disconcerting. I thought, “Am I nervous or what?” you know, slightly weak at the knees. It felt as if I was being tense about something but I, indeed I was because all this was happening very shortly after our younger daughter had a serious road accident which left her with a head injury from which she’s since made a very good recovery, but at the time it was very worrying. And it felt as if these symptoms were appearing as a result of the stress of that.
Anyway, the next thing was my handwriting getting terribly small. It looks as if it’s, well, it did then, it looked as if it was a mouse trying to write a letter. And then I found it getting more difficult to handle food with a knife and fork so that, you know, a plate of bacon and eggs was a kind of challenge in a way that it had never been before. I was a great, fast eater always shovelling food into my mouth and suddenly I was actually reduced to going like this. And there were other symptoms of that sort. And I went to the dictionary, to the encyclopedia quite early on and looked up Parkinson’s disease thinking, “This to me feels like what Parkinson’s disease might feel like”. And sure enough I had about three quarters of the symptoms. So I mentioned this to my GP and I said, you know, “I, it’s coming and going, I haven’t got this permanently. It’s, it comes and goes”. And he said, “ Well, I think in that case it won’t be Parkinson’s. And in any case you’re too young”.
Sharon described the symptoms which gradually added up till she knew she had to look for a diagnosis.
Sharon described the symptoms which gradually added up till she knew she had to look for a diagnosis.
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Oh I think all my life I’ve always found it a little bit more difficult to be coordinated. I’ve always felt I’ve had to push myself just a little bit harder. Things didn’t, weren’t. I could run but I ran awkwardly. I never felt, I never felt my body was put together properly.
And then I was walking one day and a girlfriend said, “What’s with you, you’re walking peculiarly?” And I thought I’d had a minor stroke down one side of my body, one leg, just felt longer or shorter than the other. I couldn’t even decide which. So she said, “Well pull yourself together, walk properly. It’s only because you’re walking peculiarly that it feels like that” So I pulled myself together and walked properly.
But gradually bits of me started to shake, of, my left arm started to shake and I, when I went to bed at night I lay on top of it, to stop it shaking. And nobody had noticed much. And then in February 2000 I woke up one morning, I didn’t have a voice at all. It had just completely vanished, which is a tiny bit unfortunate when you’re a deputy head teacher. And gradually things, well in the end my girlfriend says, packed me off to the doctor. So the doctor says, “It’s your nerves,” and gave me valium, which is lovely because I shared it round the girlfriend. Everybody likes a bit of valium. But it didn’t do me any good at all. The shakes didn’t work at all, didn’t, stop, stop them. And things just got worse and worse. And it, it got so, it became obvious, I started to drop things, I started to drop cups of coffee. I’d go to pick something up, I’d pick it up and next thing I knew it was on the floor. And I didn’t know how it had got there. It was, and it begun to interfere with my life.
And things like if I was on, I did a bit of orienteering and climbing and things, and I fell and broke my knee. And, I suddenly knew why I’d fallen, it was my grip had suddenly gone and I wouldn’t normally fall. And I’m storing up a whole catalogue of, of things that I knew weren’t working properly and so I was able to cover up and hide from other people, because I was a single mum living with two kids who were much too busy leading their own lives to notice old mum. And it worked, I just managed to cover it up.
But in the end I made an appointment with the doctor and just, “Listen I think there’s something much more serious wrong than, than, I know you’re a good listener and you’ve listened to everything, but I haven’t told you everything. I mean, if I I’m absolutely honest.” And so we came to an agreement that I would go and see a neurologist.
Last reviewed May 2017
Last updated May 2017
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