Parkinson's disease

Getting the diagnosis of Parkinson's disease

It is very hard to imagine what it would be like to be told that you are suffering from a condition which, so far it may have little impact on your life, is going to be there for life and may drastically affect the quality of your future.

Anyone reading this account of patients’ experiences of receiving their diagnosis may feel annoyed that the doctor giving the diagnosis did not do more to comfort, inform or generally reassure them about the future. Maybe they did. But for the person being told the diagnosis the memory of it includes their initial impression and the information that they went on to uncover about what someone describes as their ‘unwelcome guest’.

The doctor may have had to break such news many times before, but it may still be something which is not easy to do right. Some people mentioned how difficult it must be for a doctor to deliver such a ‘daunting’ sentence.

Many people we talked to felt that their diagnosis had been delivered quite brutally, that the significance of what they were being told had not been made clear.

Tom complained about the use of long words like idiopathic, substantia nigra and cogwheel rigidity. Others supposed, hearing the word disease, that this was a fatal illness, even that they might not have long to live.

Certain things said in Gaynor's first consultation stuck in her mind - ‘You and I are going to get to know each other well over the next few years if we don’t fall out or you don’t move’; and to 'explain' why she should have developed Parkinson’s disease that it was ‘the way the dice has fallen’. Her doctor also advised her to join the Parkinson’s UK.

When Rachel was told when she was 71 that she had mild early Parkinson’s disease she was advised “to regard it as a nuisance and not a tragedy,” which she thought was a very good piece of advice. 

Peter’s GP surprised him by seeming to be prepared to take a bet on his having Parkinson’s disease and offering to prove it by giving him a trial of medication.
 
One woman, who feels she had made the mistake in going alone to her first appointment, remembers she had been shocked after being told that, while Parkinson’s disease was the most probable diagnosis, only time could reveal whether this was really the case. During the next year her husband refused to accept the diagnosis and this uncertainty seriously depressed her.
 
Some people were not fully informed what was going on in their GP’s mind. For instance when they referred them on to a neurologist without actually explaining why they were doing this (some were even confused about whether neurologist wasn’t another name for a psychiatrist).
Most people's symptoms at the time of their first consultation with a neurologist were quite slight, though persistent. This might explain why at least some people could be in denial (see Path to diagnosis & Early symptoms).
Some admitted to having had some idea about the possible diagnosis before first seeing a neurologist. Bob said that he had thought that it could possibly be something like that because of the symptoms, but he didn’t want to believe that his fears would be confirmed. Ann said that she had lived for three months with the idea that she might have Parkinson’s disease; she had dreaded having it confirmed.

But for many people the news came as a complete surprise, producing stunned disbelief.

One reason for refusing to accept the diagnosis was a belief that Parkinson’s disease affected only old people. Also their symptoms were at this point a long way from the image they had of people with the condition.

Some people refused to believe that such a diagnosis could apply to them because they had always been so fit and healthy. In the case of two people who had been enthusiastic runners, their running may have helped the early discovery of their disease, as their first symptoms were problems with running.

Several people felt relief at the diagnosis because they had feared something worse, for instance a brain tumour. Others having had vague symptoms for years – fatigue, pains, cramps, spasms, shakes, had been variously diagnosed as depression, frozen shoulder, repetitive strain or felt they were being labelled as having generally hypochondriacal neurosis (an excessive fear of or preoccupation with a serious illness, despite medical testing and reassurance they did not have it). Philip had suffered from increasingly incapacitating depression which he associated with pain as he waited for a hip operation. Once Parkinson’s disease had been diagnosed and he had started on medication he soon found he no longer needed to take an antidepressant. Peter admitted that at first he felt relieved it was PD and he had not realised how serious the condition could be.
People who felt that the diagnosis could have been delivered in a better manner suggested that more information, help with coming to terms with the diagnosis or a referral to a specialist nurse would have helped. Several had unanswered questions. Over time people had found out what they needed to know from the Parkinson’s UK, websites and nurse specialists (see Information & Support and support groups), but others would have benefited from an earlier pointer. Above all they deserved a better appreciation of the loneliness and isolation of the person newly told that they have Parkinson’s disease.

"I walked out of his office and I was sort of stood in this massive corridor in an old Victorian building and there was not a soul in sight and nobody to talk to and nowhere to go. And I just had to walk home on my own with this in my head until I got home." David.

Last reviewed May 2017.
Last updated May 2017.

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