Parkinson's disease

Keeping going

Being diagnosed with Parkinson’s disease can cause a sense of loss that is hard to overcome. Despite this, most people had learnt to live with Parkinson’s and to continue with life. Sometimes without many changes, sometimes adapting and even benefiting from the change. Several people said that after the diagnosis it had been very important not to hide but to ‘keep going’ and to keep doing what they enjoyed. 

For those people who were working, there were many issues including adaptations to their place of work, their hours, and their work responsibilities (see Work, career, benefits).
While extreme tiredness often made it difficult to carry on previous activities it did not always rule them out. Instead, people found new ways of doing things. Much effort was often needed to overcome people's physical limitations. Many felt it was important to overcome these difficulties to keep active for as long as possible. Several people were determined, as Karen was, to ‘do whatever you can, when you can.’
Rafa gave up running for a while after getting his diagnosis because he was worried in case his leg stopped working as it had before and he would have to explain to his companions what was wrong. He was yet not ready to tell them that that he had Parkinson’s disease. He had however gone back to playing tennis and playing the saxophone both of which he feels help because they force him to use his affected arm. When Steve could no longer compete as a runner this did not stop him from continuing to run regularly and even be voted Sportsman of the Year by his club.
Hobbies were valued as giving psychological and physical benefits. Robert argues that there is no reason to give up the things you enjoy doing just because you are no longer as good at them as you once were. Other things you can no longer do can still be enjoyable to watch. Bob now watches football rather than playing himself.
 
Steve’s running mates felt that he should not exert himself too much, but he was not sure whether they were right about that. When Gaynor did a Moonwalk with her friends she realised that she was more exhausted and took much longer to recover than they did. But the sense of achievement made it all very worthwhile and did her little harm. It is clearly important for people with Parkinson’s to remain as physically active as they can' there is no evidence that pushing themselves to do a bit more than feels comfortable does any serious harm.
 
Most people paced themselves while remaining determined to keep active. Eddie, at 83 and living alone, continued to tend his own and other people’s gardens but admitted that it meant that he perhaps spent less time on housework than he should. Ruth struggles to do her housework but manages by doing one room at a time, with frequent rests. Penny struggles to do her gardening but sometimes stuff that needs clearing overwhelms her and it's hard to find someone who understands her need for some help.
 
Resources exist for people with Parkinson’s disease, but they may not be easy to discover or obtain. Occupational therapists are trained to advise on adaptations which can be made in people’s houses to allow them to live more comfortably. The most obvious is the stair rail which can help take the danger out of a trip upstairs.
More expensive and complicated to install is a stair-lift. Several people mentioned considering getting one installed though some, like Fred, felt that to accept one amounted to giving in. Robert also felt that he should try not to use his. Perhaps because he was an active member of the local Parkinson’s support group he could tap into useful advice and got funding for some of the things required to make life easier, particularly a wet room which had plenty of space for taking a shower. Mari believed that her husband did not want a chair-lift in their tall narrow house. Only after he died did she discover from his diaries how much he minded the time he wasted struggling even to start the demanding journeys up and down stairs.
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Many other aids are available. Rex said that his ride-on mower was his pride and joy; he had also been helped by getting an electric shaver and electric toothbrush. Fiona had bought a long shoe horn and also satin pyjamas which helped her partner to turn her over in bed. Angela had found a Black and Decker ‘Scum Buster’ at a chemist. She found it useful for cleaning in hard-to-reach areas in the kitchen. Peter needed his wife to help him in the shower but they had also installed a grab rail and an adjustable stool, a support frame for the toilet and what he described as elephant’s feet for chairs to raise them and make them easier for him to get out of.
 
Karen’s best purchase was a pill-timer as she tended to forget to take her medication, which could cause her a lot of unnecessary symptoms. Geraldine and David each had their own version of pill timers, agreeing that regular dosage was crucial to some people who are very sensitive to the timing and dosage of their medication.
 
Several people had found or invented unusual aids. Julie discovered that it helped to cut the back of John’s shirts to allow easy access in the loo. They had also rigged up a pulley system in the bed to help him raise himself. Geraldine had taken to wearing hold-up stockings and to cutting her hair short so that she didn’t need to use an electric hairdryer. Gina had been given something to put on the end of her car key which made it easier to turn. Isabelle had replaced her china with plastic crockery to cut down on breakages.
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Last reviewed May 2017.
Last updated May 2017.

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