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                                                                                    Information Sheet


                               Telling People about
                               Parkinson’s
     Deciding whether or not to tell people you                         workplace). Or perhaps you want an escape.
     meet about your Parkinson’s disease can be                         For one lady with Parkinson’s: “My singing
     difficult. Some people are naturally up front,                     group is my getaway. I don’t want it to be all
     and find it relatively easy to talk openly about                   about Parkinson’s. For an hour and a half every
     their Parkinson’s when the occasion demands                        Monday, I just want to think about singing.”
     it. Others are more reserved, private by nature,
                                                                        So when does the time come to mention it?
     or perhaps they find it hard to come up with
                                                                        Well, to take a worst-case scenario, there
     the right words.
                                                                        could be times when your personal safety
     Even if you are a naturally upfront sort of                        might be at stake. Our Helpline has responded
     person, explaining Parkinson’s to people you                       to calls from people who have been strip-
     meet in everyday situations can be daunting.                       searched at airports because customs staff
     The physical conditions associated with                            mistook their symptoms and thought they
     Parkinson’s can in themselves be barriers to                       were on drugs. In such situations, it can make
     communication, and it works both ways.                             all the difference to have a frank explanation
     Parkinson’s affects people in very different                       ready to hand.
     ways, and can affect both appearance and                           But for almost everyone, there will be times
     function. It remains a condition that is quite                     in everyday life when you need people to
     poorly understood by the general public.                           accommodate the way Parkinson’s affects you.
     People can be alarmed by some of the more                          Perhaps you will need to take more frequent
     visible effects (such as tremor and movement                       breaks than other participants at a residents’
     difficulties), or misunderstand other aspects                      meeting. Maybe you will need to sit down – or
     of the condition (such as ‘off’ episodes). The
                                                                        get up and walk around more often. You may feel
     masking of facial expressions and the slowing
                                                                        you need to prepare people for the possibility of
     of response that affects some people can be
                                                                        an ‘off’ episode, or explain why they will see you
     mistaken for a lack of interest, boredom or
                                                                        taking medication.
     depression – which can be particularly difficult
     when you are hoping to present a friendly face    Dr Ceri Bowen, International Fellow for
     to new acquaintances.                             Working with Families at the Royal Hospital for
                                                       Neuro-disability (RHND), suggests a common-
     When is the right time to say something?          sense rule of thumb: “If you’ve spent more
     Well, maybe never. You don’t owe anybody          than five or ten minutes feeling uncomfortable
     an explanation, and there are many excellent      about whether to mention it, and the thought
     reasons why you might choose to keep your         is intruding into your ability to concentrate on
     Parkinson’s private. You may feel you want to     what you are there for, then it’s probably time
     feel able to go about your business without being to say something.” If you’re still unsure, speak
     defined by other people’s ideas of Parkinson’s    to someone at the class or group about what
     (particularly important for many people in the    would be a good way to broach the subject.

Contact the Parkinson’s Disease Society freephone helpline for advice and information on 0808 800 0303
Contact the Parkinson’s Disease Society freephone helpline for advice and information on 0808 800 0303                       1
                                                                                    Information Sheet



     How do you find the right words?                                   How do you get across what you need to
     In short, practice. Dr Bowen suggests a simple                     without becoming the centre of attention?
     exercise: “Imagine you are meeting an old friend                   A different, but related, concern is that rather
     you haven’t seen for ten years. What are the                       than reacting badly, people might react ‘too
     things they will notice about you?” This can be a                  well’. Having asked for help with one thing,
     useful way of starting to explain the more visible                 you may find yourself embarrassed by further,
     aspects of the way Parkinson’s affects you.                        quite unnecessary offers. If you really don’t
     But, as Dr Bowen recognises, it can also be                        feel you can cope with being the centre of
     upsetting. He recommends talking about your                        attention, think about other ways to get across
     feelings and experience of Parkinson’s witha                       what you need to. If you’re joining a new group
     partner or trusted friend before going public:                     or class, for example, you could talk to the
     “Monitor your own emotions while you talk.                         course leader before it begins and arrange for
     How easily do the words come? Can you take                         them to explain what you want to say to the
     turns in conversation with the other person? Are                   group. You could even arrange to come along
     you able to take in questions? Can you distance                    ten minutes late the first time, if that makes it
     yourself enough to think about how your words                      easier for you.
     would sound to someone who wasn’t going                            Whether it’s you or someone else explaining
     through what you are going through?”                               things, it can help to be very clear and explicit
     One of the best sources of support can be                          about what you want other people to do. Say
     talking to other people who are going through                      how you want them to treat you. Explain what
     the same thing. If you can get your own thoughts                   you need them to be aware of. Be clear about
     in order, it will become much less difficult to                    what practical assistance is helpful – and what
     explain things to new people you meet.                             isn’t. Don’t be shy of giving clear examples.
                                                                        Many people’s misplaced helpfulness stems
     How will people react?                                             from nervousness. Knowing what to expect,
     Often, one of the reasons people hold back                         and understanding what you actually need,
     from mentioning their Parkinson’s is that they                     can help to put them at their ease, ensuring
     don’t know how the other person will react.                        that you all have a more enjoyable time.
     Reactions can be magnificent, matter of fact,
                                                                        The need, on occasion, to explain your
     tactless or downright annoying.
                                                                        condition to people you meet is just one of
     If you can manage to stay in control of the                        the challenges of living with Parkinson’s. But
     conversation, you will be less at the mercy of                     finding strategies that work for you will make
     other people’s reactions. Think about ways                         sure that it doesn’t become a barrier between
     you could manage the conversation. If you                          you and the things you want to do.
     can, choose when to initiate it. Try to anticipate
     the things other people might want to know,        Acknowledgements
     and decide what you want to say.                   With special thanks to Natasha Gowman.


Contact the Parkinson’s Disease Society freephone helpline for advice and information on 0808 800 0303                      2
                                                                                    Information Sheet




Contact the Parkinson’s Disease Society freephone helpline for advice and information on 0808 800 0303   3
                                                                                    Information Sheet




                                                          Parkinson’s Disease Society
                                              215 Vauxhall Bridge Road, London SW1V 1EJ, UK
                                                    Tel: 020 7931 8080 Fax: 020 7233 9908
                           Helpline: 0808 800 0303 Text Relay: 18001 0808 800 0303 (for textphone users only)
                     (The Helpline is a confidential service. Calls are free from UK landlines and some mobile networks)
                                    Email: enquiries@parkinsons.org.uk Website: www.parkinsons.org.uk

                                        © Parkinson’s Disease Society of the United Kingdom (2008)
                           Charity registered in England and Wales No. 258197 and in Scotland No. SC037554.
                                     A company limited by guarantee. Registered No. 948776 (London)
                                      Registered office: 215 Vauxhall Bridge Road, London SW1V 1EJ

                                                          Revised November 2008

                To obtain any PDS resource, please go online to www.parkinsons.org.uk or contact Sharward Services Ltd,
                 the appointed PDS Distribution House, at Westerfield Business Centre, Main Road, Westerfield, Ipswich,
                        Suffolk IP6 9AB Tel: 01473 212115 Fax: 01473 212114 Email: parkinsons@sharward.co.uk

Contact the Parkinson’s Disease Society freephone helpline for advice and information on 0808 800 0303
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