Parkinson's disease

Now and the future

Many people when they first learn that they have Parkinson’s disease have little idea how the condition will apply to them. Most realised that each person was so different that no accurate predictions for the future were possible.

Rafa found that he could switch off from this kind of concern a lot of the time. But he was fortunate. Most people cannot really forget that they have Parkinson’s disease even though their symptoms may be well controlled.
Several people had felt fear and depression during the first year after diagnosis as the future seemed so uncertain. Some, like Karen could come to some sort of acceptance that they had the disease and they decided to manage as best they could.
But others were angry at the unfairness of it all, and were jealous of people who didn’t have this problem.
Gaynor is not prepared to accept, as she feels some people expect her to, that what has happened to her should be looked on as a ‘gift’. What she does accept, like others we interviewed, is that if you’ve got it, that is what you have got, and there is no getting away from it, so life has to go on. Of course there are lingering thoughts, as Fred says, about where it is all going to end.
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Several people were sad that they might not be able to enjoy and care for future grandchildren, or that their rigid facial expression might be a disadvantage in their relationship with their grandchildren. Ruth’s grandchildren have known about her Parkinson’s disease since it was first diagnosed. They take an interest in it and have been read a book called ‘My Gran has Parkinson’s’ but she still dreads what it will be like for them in the future.
Many strategies were suggested to cope with these inevitably dark thoughts. Some people believed that they were naturally positive thinkers and chose not to brood on what might be in store for them. Natalia doesn’t spend her time worrying that she might be in a wheelchair in two years' time. Instead she feels lucky that her symptoms haven’t progressed too quickly.
Many people lived one day at a time and tried to live their life as fully as they can. Some people threw themselves into new activities. Some were things which stretched their physical capacities - Tom’s walks for charity, Judie’s sailing and abseiling, Alan’s dancing. Other people extended their social life by becoming involved in activities connected with their local Parkinson’s UK group. Or they revived old friendships and interests. Several people described how much the support of their families and friends had helped them.
Several people described how it helped to be able to laugh at themselves. Karen said she and her family were always laughing. People who had got stuck in their baths could later turn these episodes into funny stories. They could laugh about times when they had frozen in unsuitable places, disasters with eating or at people's often unkind interpretations of their behaviour. Judie was on a Parkinson’s course when she found herself included in a sail round the Isle of Wight:
There were some practical considerations. Sharon knew that she would need to live somewhere without stairs and where she would not feel isolated.
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Some people felt isolated because they thought people got tired of hearing about their fears and concerns. Penny feels that Parkinson’s disease was partly responsible for the breakdown of her marriage and that it will make it difficult to start a new relationship. She joined a web forum for a helpful and supportive Parkinson’s community, and finds it easier to discuss some of her fears and grievances with people she has not met but with whom she has so much in common. She believes her friends think she is too involved in her ‘new hobby,’ Parkinson’s disease. Geraldine realises that people could become bored with talk about Parkinson’s disease since her partner has discouraged her from responding too enthusiastically to the apparent interest of his business colleagues.
When people are thinking about their future they have to think about who will be able to look after them. It is easier not to think about it, but the thought is there.

Last reviewed May 2017.
Last updated May 2017.

 

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