Parkinson's disease

Support and support groups

Most people told us that when they were diagnosed they had little or no experience of Parkinson’s disease and did not actually know anyone who had it.  Although most people had been informed about the Parkinson’s UK and many had contacted the society and obtained useful information, some of them held back from taking things further by joining a Parkinson’s disease support group. Most explained their reluctance like Jean did: ‘I don’t want to see round the next corner what might be happening to me, I’d rather I didn’t know.’ 

Some people benefited most from one-to-one support, either through talking to others who had Parkinson’s disease or through counselling. Penny, a single parent living with her 25 year old son, felt that it would be wrong for her to burden either her son or her mother with her feelings about having Parkinson’s disease. She got support through the occupational health department of her work.
Some people who were not keen on joining a group were much helped by sharing their experiences with someone and being able to compare notes. Usually people preferred to find someone whose experiences were close to their own, though this was not always possible. Even where two people seemed to have a lot in common, often one of them would get worse faster than the other. Helen had not felt ready to join a group and was desperate to meet someone else in her position. The PD nurse gave her Karen’s name. Though Karen has had Parkinson’s disease for longer than her they have become mutually supportive friends. Humphrey said he was not good at getting out to meetings in the evening but he liked to get in touch with people who had PD, and found it interesting to exchange experiences, particularly when he realised how different the condition seemed to be in each person. Penny used a patient internet forum to talk to others with Parkinson’s disease and found it helpful.
Some people who had at first resisted the idea of getting together with a lot of other people with Parkinson’s disease had had good experiences which changed their minds.
Several people did join their local support group and found it very useful. It provided an opportunity to share tips on coping with problems, comradeship, and a social occasion. Some people found it helpful to see others to make comparisons with their own symptoms.
Some met regularly, inviting people like the local Parkinson’s disease nurse or consultant neurologist to give talks. Peter’s group organised a successful campaign to get a specialist nurse. Often these meetings introduced people to sources of help that they might not otherwise have known about.
In recent years several local branches of the Parkinson’s UK have had groups especially for younger people. Support also exists on a national level through the Younger People’s Network.
Bob, who is 55 and has joined a local young person’s PD group, described how he had met lots of really interesting people. They had started to do all sorts of things together, including going out for meals.
Other people had no time to attend support group meetings. Gina was working full time to repay her debts and managed to attend weekend meetings only occasionally. Rachel admitted that the main reason for not joining a PD support group was that she was a ‘bit of a hermit’, but also found that her Parkinson’s made all she did take longer than before and that she wouldn’t have had time to go on doing the things she really enjoyed doing with her husband as well as attending meetings. Penny would have liked to attend meetings for Young People with Parkinson’s but she didn’t feel up to undertaking the longish drive after work, she couldn’t attend the local group's daytime meetings either.
Angela felt that there were too many different Parkinson’s charities and that they might achieve more if they were to pool their resources. Others derived great satisfaction from charities they had become involved with, or in Tom’s case helped to create, and could raise considerable sums for research.
Two people we interviewed had taken part in the Expert Patient programme which they had found very useful. It helped them to gain confidence and reach a more positive attitude to their own condition and a greater understanding of other conditions causing long term illness. Penny found out about the programme from the Patient Advisory Liaison Services (PALS, a part of the Department of Health).
 

Last reviewed May 2017.
Last updated May 2017.

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