Parkinson's disease

Information about Parkinson's disease

Most people knew little about the disease before they were diagnosed. Few realised that it could affect people in middle age or that symptoms could be relatively mild. Those who had known someone with Parkinson’s often described an elderly person with pronounced symptoms.

The father of one of K’s friends had dementia as well as Parkinson’s, leaving her with a rather negative image of the disease. Alan said that it was hard to disentangle what he had known about the disease before he was diagnosed from what he had learnt since.

Some people were in a dilemma about how much they wanted to know about the disease. K did not want to spoil her life now by finding out too much, or thinking about it too much. Keith suggested that it depends on your personality how much you want to find out.

Many people we talked to had avoided potentially depressing information about the disease. Some asked family or friends to look at books and internet sites for them so that they could be warned off any material that might upset them.

Fiona and John said that it had been scary at first to read about what might happen. K, whose partner was diagnosed early, reflected that ‘blissful ignorance’ might have been better for a bit longer.

Tom thought that doctors must find it difficult for to judge how much to tell people because some 'will want to know the whole lot and [others] only want to know three days ahead.’

Sharon remarked that she had never wanted to be an expert in Parkinson’s and that her friends and family have learnt much more about it than she has. Her consultant said that he could not tell her what the future holds because it affects people in such very different ways.  Elaine concluded that, since the future is so uncertain, why worry about it? ‘Why waste the rest of our life worrying about something that may not happen?’

For those who do want to find out about Parkinson’s there are many sources of information, but several people wished that their medical team had not left them to find things for themselves. Specialist nurses were much appreciated by the people we interviewed, but many people did not have one at their clinic in 2008 and there are still some areas with little or no access to a specialist Parkinson’s nurse.

People used their local libraries, bought books, found other people with Parkinson’s, picked up leaflets at the hospital and pharmacy, used the internet and contacted Parkinson’s UK. David said that he always made a point of reading the information that came with his medication which is why he was dismayed when he developed side effects which he later discovered were known to be a side effect of the beta-agonist medication he was taking.

Some consultants had actually discouraged people from looking for information, particularly on the internet, though as Fiona and John said, they did not always follow this advice.

Several people had read the Parkinson’s UK magazine from cover to cover and found the website very useful. Steve, who joined Parkinson’s UK, said that he had no information needs because he knows that can find out anything wants to know. Karen agreed that the Parkinson’s UK website and DVD are both very good and wishes it had existed when she was diagnosed 6 years ago.

Other people’s experiences of Parkinson’s were sought for various reasons including reassurance, practical tips and information. Gina asked around – wondering if anyone in her circle knew anyone else who had had the disease. She was very reassured to hear of a relative of one of her husband’s colleagues who had been diagnosed 20 years earlier and only had a shaking arm ‘which had never got any worse.’

Karen said that contact with a girl who was in a similar situation really helped her to cope – they were ‘able to share each other's experiences and cry on each other’s shoulders and just really learn to cope together … that was a real Godsend’.  

David talked to no-one else with PD for the first few years after diagnosis and described it as a solitary, secretive disease. K, whose partner had been diagnosed early and had not told family or colleagues, said that it would be useful to hear that others are coping well with PD because the image can be overly depressing.
 
It may seem a bit contradictory but Tom said that he very much wanted to hear about other people’s experiences because everyone has PD in a slightly different way.

People often become acutely aware of media articles and programmes about PD and wonder if the media interest in PD has always been there, but unnoticed by them. Certainly people thought they now noticed any hints of medical breakthroughs, or reports of famous people who share their diagnosis. Gaynor read a book about the actor Michael J Fox after her children vetted it and told her it was OK to read.

Gina who had compulsive gambling as side effect of her medication was given an article in US paper about a man whose wife had divorced him because of an adverse effect of his medication. She gave the cutting to her solicitor. She believed that her problem would not have arisen if the information which came with the pills she had been prescribed had indicated that gambling was a known side effect of this medication.

The internet was the first source of information for many people, but there were some concerns, particularly about commercial sites or biased information from people wanting to sell untrustworthy cures. The Parkinson’s UK site, Cure Parkinson’s and the European Parkinson’s Disease Association were all recommended (see Resources).

Natalia said that she had used the internet to find out about new treatments, though sometimes they turned out to be ‘pie in the sky’. She also warned that some information on the web can be frightening.

Alan had bought books on the internet, but now found that he was constantly getting alerts, which were not always welcome, whenever a new book on PD became available. People who did not have internet at home usually had a family member or friend who could look things up on their behalf.

People we talked to told us that they had found practical information and tips about living with PD, as well as advice about benefits and how to manage at work. However, the key question for many people was how their own disease would progress, but that was not answered. Some people found this uncertainty hard to live with, but it gave others found reasons to be positive.

Last reviewed May 2017.
Last updated May 2017.

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