MY TOP RESOURCES

1. AN OPEN AND FLEXIBLE APPROACH Parkinsons affects people in very different ways. So, one of the most important things is to treat each person as an individual, by ascertaining their personal symptomology at that time. There is no catchall speech and language solution for Parkinsons and therapy should be tailored to each persons specific difficulties, functional needs and progression through the condition. Importantly, these needs are likely to change over time, as Parkinsons is a progressive condition that we cannot put a timescale on. Individuals will progress at different rates. PARKINSONS DISEASE IS A PROGRESSIVE NEUROLOGICAL CONDITION, AFFECTING APPROXIMATELY 120,000 PEOPLE IN THE UK. ACCORDING TO SPEECH AND SWALLOWING PROBLEMS IN PARKINSONS DISEASE (DR NICK MILLER, UNIVERSITY OF NEWCASTLE, 2005), UP TO 70 PER CENT OF PEOPLE WITH PARKINSONS DEVELOP PROBLEMS WITH THEIR SPEECH, COMMUNICATION OR SWALLOWING. HOWEVER, SPEECH, WRITING AND SWALLOWING PROBLEMS DO NOT ALWAYS ACCOMPANY EACH OTHER. SPEECH AND LANGUAGE THERAPY IS VERY IMPORTANT FOR PEOPLE WITH PARKINSONS AND CAN MAKE A HUGE DIFFERENCE BOTH TO THE QUALITY OF THEIR LIVES AND THE LIVES OF THEIR FAMILIES. OFTEN PEOPLE ARE UNAWARE OF THE BENEFITS AND AVAILABILITY OF SPEECH AND LANGUAGE THERAPY. WHEN PEOPLE DO ACCESS THERAPY, HOW DO WE MEASURE UP? THE PARKINSONS DISEASE SOCIETY ASKED PEOPLE WITH PARKINSONS DISEASE TO THINK ABOUT THE RESOURCES THEY VALUE MOST IN A SPEECH AND LANGUAGE THERAPIST 2. AN ACCEPTANCE OF GOOD AND BAD DAYS The way a person is affected by Parkinsons disease can change from day to day, or indeed hour to hour, and the individual may be less able to do things during an appointment when all may have seemed fine on a previous occasion. This is due to the fluctuating nature of Parkinsons and not the person being obstructive or difficult. They may simply be more tired, or be having more difficulties with moving and focusing that day. 3. AN AWARENESS OF MEDICATION EFFECTS For people with Parkinsons the times when medication is taken is crucial, and each individual has their own regimen. The individual may experience periods when the effect of the most recent dose wears off before the next one is due or has begun to work, and a persons abilities will fluctuate in relation to this. There may be sudden switches from being on and able to move, to being off and immobile. It is important to consider times of appointments in connection with medication so that therapy can be scheduled when the person with Parkinsons disease is best able to gain benefit from it. 4. AN ABILITY TO SEE BEYOND THE MASK Being able to communicate is an integral part of managing and enjoying life. The loss of communication skills can have a profound effect on the quality of life of the person with Parkinsons as well as that of their family. Indeed, the effect of difficulties on the persons life may not be directly related to the extent of voice-speech changes, nor the level of intelligibility, but rather how they compromise the persons specific lifestyle. The need for therapy is very much an individual matter and it is important that therapy be directed at outcomes that are discussed with the individual in relation to their lifestyle. Communication difficulties can also create a misleading impression of the person, so that they are incorrectly perceived by other people as being difficult, deaf, drunk or unintelligent. Reduced facial expression when listening and during speech, plus problems with smiling, may result in the person appearing to be bored, unresponsive and humourless. Again this can also fluctuate. Impaired ability to communicate can lead to withdrawal from social events and activities so, when interacting with somebody with Parkinsons, be aware of their possible feelings of social isolation and avoid trying to guess or assume what theyre thinking. Decreased ease of communication can have a considerable effect on relationships, which makes it very important to involve family members in the therapy process. 5. A WILLINGNESS TO GIVE EXTRA TIME An appointment with somebody with Parkinsons may take longer than with other clients. Movement difficulties, unwanted involuntary movements (dyskinesias) and possible episodes of freezing may mean that it takes several minutes for the individual to get into the room and sit down. Make sure that the appointment room is easily accessible and check with the person that the seating provided is suitable for their use. Also, slowed response times may mean that the actual therapy process requires more time. An unhurried atmosphere is more relaxing for the person and creates a better therapy environment. The voice of somebody living with Parkinsons can be affected in a number of ways. For example, it may be soft or lack volume, fade in volume, lack variation and expression, be hoarse or tremulous. Also, the person may speak too quickly, hesitate or have difficulty when starting to speak. Any of these aspects may be targeted in therapy as appropriate to the individual. As with all clients, its important not to rush people with Parkinsons or interrupt them. Give them extra time to respond to questions and dont pretend to understand something if you havent. Watch as well as listen to them when theyre speaking, remembering that there will almost certainly be a decrease in the non-verbal aspects of their communication. 6. KNOWLEDGE OF EATING AND SWALLOWING DIFFICULTIES Some people with Parkinsons have difficulty with eating and drinking due to decreased musculature ability affecting both mastication and swallowing. This can be a cause of great anxiety, concern and embarrassment for both the person and others and can lead to avoidance of eating with others and indeed to malnutrition. It is worth noting that people often do not seek help until the problems have progressed. Managing saliva can be a further source of embarrassment through escape of saliva due to impaired lip closure. Its important that speech and language therapists identify and assess difficulties in this area. Advice and exercises can be helpful as can working with other specialists such as occupational therapists and physiotherapists to consider other options. It is also important to ensure the person with Parkinsons disease understands the need for continual practice of any exercises given, and to review the situation regularly. 7. A DESIRE TO INVOLVE AND HELP THE FAMILY An individuals family may not realise why some day-to-day activities are more challenging than others, for example why theyre having difficulty communicating, swallowing or eating. Wherever possible, advise and work with the family of a person with Parkinsons. If you help them to understand whats going on and give advice about what they can do to help, youll alleviate anxiety, improve communication within the family and make things easier to deal with. Explanation about the fluctuating nature of Parkinsons and indeed everything else mentioned here is helpful to family members and to the person with the condition. 8. A POSITIVE APPROACH For somebody living with Parkinsons, speech and language difficulties can be stressful and isolating. The individual can find him or herself in a world of ever-decreasing communication situations and opportunities. Therapists should adopt and maintain a positive and dynamic approach to rehabilitation at all times, for example by noticing and giving feedback on strengths and successes and helping the client identify and make the most of situations where they do feel more confident. 9. ACCESS TO COMMUNICATION AID SUPPORT In addition to exercises, its worth considering communication aids such as amplifiers. But people cant just be given a piece of equipment and left to their own devices. Instead, they should be given appropriate support to use the aid and their needs should be reviewed regularly. Whilst aids can help, consideration of the communication environment is also very important so that areas in the normal environment whether at home or in a work area can be addressed to be made more helpful. 10. A WISH TO FIND OUT MORE Parkinsons is a very individual condition, and many people living with it tell us they feel that health professionals do not know enough about it. The Parkinsons Disease Society has a range of information resources for professionals working with people with Parkinsons. In addition, it offers flexible, professional and financially accessible training programmes for all staff working with or providing care for people with Parkinsons and their carers. To find out more, visit www. parkinsons.org.uk or contact the PDS on 020 7931 8080 for details of the Education and Training Manager in your region.