Living

with Parkinson’s
a guide for people of working age affected by the condition

About the Parkinson’s Disease Society The Parkinson’s Disease Society (PDS) works with people with Parkinson’s, their carers, families and friends, and health and social care professionals to provide support, information and advice. We are committed to investing in research, education and campaigning to improve the lives of people affected by the condition. The PDS has over 30,000 members, and more than 330 branches, support groups and special interest groups throughout the UK. How you can help us We are totally dependent on voluntary donations so if you would like to make a contribution, it would be gratefully received. Any money received will help us support others affected by Parkinson’s through information, care and research. To make a donation, please call 020 7931 1303, visit www.parkinsons.org.uk/donate or write to Parkinson’s Disease Society, 215 Vauxhall Bridge Road, London SW1V 1EJ. Thank you. Parkinson’s Disease Society 215 Vauxhall Bridge Road London SW1V 1EJ Helpline: 0808 800 0303 (The Helpline is a confidential service. Calls are free from UK landlines and some mobile networks.) Email: enquiries@parkinsons.org.uk www.parkinsons.org.uk

Thank you Many thanks to Bridget McCall and all the Parkinson’s Disease Society members who contributed to this booklet.

Living with Parkinson’s: a guide for people of working age affected by the condition
Although Parkinson’s is more common in older people, in the UK it is estimated that of the 10,000 people diagnosed each year, one in 20 is under the age of 40. This means there are around 6,000 people of this age living with Parkinson’s in the UK. This booklet addresses the particular challenges that people with Parkinson’s who are of working age can face. These include supporting children and teenagers, needing help and information about work and money, and coping with the emotional effects of being diagnosed at a younger age. Everyone’s experience of living with Parkinson’s is different, but we hope this guide answers many of your questions and, through the voices of others affected, provides some inspiration.

Other PDS publications you may find useful include: • The Employment Guide (code B103) • The Carer’s Guide (code B071) • Sex, Intimate Relationships and Parkinson’s booklet (code B034) • Juvenile Parkinson’s information sheet (code FS85) • Pregnancy and Parkinson’s information sheet (code FS93) • Talking to Children about Parkinson’s information sheet (code FS66) • Introduction to the Younger Parkinson’s Network leaflet (code L1Y0) Many other PDS resources are recommended throughout the booklet. There are also signposts to other organisations, books and websites, full details of which are listed at the back.

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Contents

6 14 25 33 41 46 49 57 66 75 87 93 105

Parkinson’s disease Medical treatments Emotional and psychological effects Relationships Being a parent Living on your own Communication Independence and daily living Diet and exercise Travel and leisure Work and money Self-help Resources and contacts

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Parkinson’s disease
What is Parkinson’s?
Parkinson’s disease is a progressive and fluctuating neurological condition affecting movements such as walking, swallowing and writing. It has three main symptoms: • Tremor, which occurs when the affected part of the body is at rest and decreases or stops when it is in use. Tremor usually begins in one hand or arm and often becomes more noticeable when the person with Parkinson’s is anxious or excited. Although tremor is the symptom that most people identify with Parkinson’s, it is only present in around 70% of people with the condition. • Muscular rigidity (which many people experience as stiffness). This can cause the person with Parkinson’s to have problems turning round, getting out of a chair, turning over in bed or making fine finger movements, such as touch-typing or fastening a button. Some people find that their posture becomes stooped or their face becomes stiff, making facial expressions more difficult. Rigidity can affect many everyday tasks and can sometimes be painful. • Slowness of movement. Initiating movements can become more difficult and take longer to perform. Lack of co-ordination when making movements can also be difficult.

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bladder and bowel problems. discussed and treated. and in their response to the treatments available. Everyone is very different in terms of the nature. including: • See the PDS booklet Parkinson’s and You (code P002) and DVD Being There (code V012). Want to know more? This booklet does not provide in-depth information on the nature of Parkinson’s. anxiety. The PDS Non-motor Symptoms Questionnaire (B117) can be completed and given to GPs to ensure any problems are identified. facial expression.Other symptoms of Parkinson’s may include problems with balance and walking. If you have questions or want to discuss the impact that Parkinson’s is having on your life. People with Parkinson’s can also experience non-motor symptoms. • See the PDS booklet Moving On (code B001). in no particular order. such as sleep difficulties. including speech. for people who have been recently diagnosed. body language and handwriting. contact the PDS Helpline on 0808 800 0303 for further advice and support. depression. • Relevant books and websites are listed at the back of this booklet. for those who have had Parkinson’s for some years. 7 . severity and rate of progression of the symptoms they experience. excessive sweating. Don’t be surprised if someone else you know with Parkinson’s has very different symptoms to you. and difficulties with communication. You will find this in many other Parkinson’s Disease Society (PDS) publications. Parkinson’s symptoms usually begin slowly and develop gradually. saliva control difficulties and memory problems.

8 . which are grouped with Parkinson’s under the ‘umbrella’ term of parkinsonism. rigidity and slowness of movement. Want to know more? • See the PDS information sheet Parkinsonism (code FS14). • If you have been diagnosed with MSA. About 85% of people with parkinsonism have the most common form. However. you may wish to contact the Sarah Matheson Trust for Multiple System Atrophy. The average age of onset is around 60 years and the risk of developing the condition increases with age. • If you have been diagnosed with PSP. The other 15% have other rarer conditions. although the condition is more common in older people. such as multiple system atrophy (MSA) and progressive supranuclear palsy (PSP). What impact does the age at which you are diagnosed have on Parkinson’s? People of any age can be diagnosed with Parkinson’s. Parkinson’s disease (also known as idiopathic Parkinson’s disease). you may wish to contact the PSP (Europe) Association. similar to Parkinson’s. Your age can have a significant impact on the medical management options that may be considered to be the most appropriate for you. younger people can also have Parkinson’s – it is estimated that one in 20 of those diagnosed are under 40 years old.What is parkinsonism? Parkinsonism is a term used to describe conditions that feature the main symptoms of Parkinson’s – tremor.

Tremor tends to occur slightly less often in younger people. as recognition of the fact that younger people can have Parkinson’s has improved. ‘Young-onset Parkinson’s disease’ means a diagnosis of Parkinson’s in someone who is under the age 40. In the past. some younger people have found it hard to get an accurate diagnosis. Any decisions on treatment need to involve a partnership between the doctor and person with Parkinson’s. PSP or Wilson’s disease – a rare. and the more sensitive response to the medication that many younger people have. it is very important to rule out other possible conditions.how you respond to the medication and the effects the condition has on your lifestyle. all younger people with Parkinson’s should be under the care of a neurologist who has a special interest in Parkinson’s. When a diagnosis of Parkinson’s is suspected in a younger person. although the term is often used to refer to anyone of working age (i. such as turning in or arching of the foot) seem to be more common. but depression and dystonic spasms (sustained abnormal postures. especially with regard to side effects. but two considerations will greatly affect what is prescribed for younger people: the fact that they will have to live with Parkinson’s for many years. For these reasons. personal circumstances and 9 . taking into account their abilities. such as MSA. up to 65).e. Treatments will be similar to those used in older people. this has become less of a problem in recent years. However. inherited neurological condition that has some parkinsonian features.

Common concerns include finances. employment. These drugs tend to cause fewer side effects while providing good symptom control in the early stages. 10 . Treatment strategies might include: • not starting the medication immediately if symptoms are mild and can be managed through a healthy lifestyle.requirements – which may be very different from another younger person with Parkinson’s. which may be offered to those who have drug-resistant symptoms or who no longer obtain sufficient symptom control from their medication. levodopa is usually prescribed as the condition progresses. The person’s family may also be involved in decisions about treatment. However. alongside the support of professionals. Younger people are often better candidates for surgery because they are usually in better health and don’t have the complicating co-existing conditions that older people often have Many younger people with Parkinson’s find that it is the psychological. such as physiotherapists and occupational therapists • starting treatment with dopamine agonists or monoamine oxidase B inhibitors. for example. emotional and social consequences of living with Parkinson’s that have the greatest impact on their lifestyle. They are. relationships and raising children. rather than levodopa. generally not as effective as levodopa – which may be used from the start if it gives an individual better symptom control that enables the person to go on working. however. It is not uncommon for a person to be taking more than one drug to treat their symptoms • surgery.

dopa-responsive dystonia (also known as Segawa’s syndrome) or an unusual form of Huntington’s disease. the diagnosis may be Parkinson’s. • The book Living with Parkinson’s Disease by Bridget McCall has a chapter on young-onset Parkinson’s. Anyone with suspected juvenile Parkinson’s disease should seek advice from a neurologist who has expertise in treating children. the symptoms of Parkinson’s can occur in children and young people aged under 21 years. the symptoms can also be caused by rare conditions. in some cases. Want to know more? • See the PDS information sheet Juvenile Parkinson’s (code FS85). but many women with the condition report a worsening of their symptoms before and during their period. 11 . including Wilson’s disease. Can children get Parkinson’s? Very rarely. Can women’s menstrual cycles affect their Parkinson’s? The information on menstruation and Parkinson’s is limited. This is known as ‘juvenile Parkinson’s disease’.Want to know more? • The PDS’s Younger Parkinson’s Network (YPN) can provide you with more information and contact with other younger people affected by Parkinson’s. Although.

If you are concerned about your symptoms. especially if their symptoms are severe. If you are experiencing menstrual or other gynaecological problems. you should discuss this further with your doctor or Parkinson’s Disease Nurse Specialist (PDNS). However. However.Some women also find that they have problems with managing the practical aspects of having a period. particularly in younger age groups. you should discuss this further with your doctor. This may help to explain why slightly more men develop the condition than women. research suggests that oestrogen may help protect the dopamine pathways in Parkinson’s. Some studies have found that Parkinson’s symptoms may worsen once a woman has reached the menopause. Is there a link between oestrogen and Parkinson’s? Information on the menopause and Parkinson’s is limited. 12 . which can often be alleviated by hormone replacement therapy (HRT). other studies found inconclusive evidence of the positive effects of HRT. Further research is needed in this area.

But the tremor didn’t really change and as I already had low blood pressure. As far as I was aware. I did not really notice anything more until 2005. my leg started to shake. In a way. There was mention of Parkinson’s disease but it was not high on anybody’s list. use a computer mouse easily or even brush my teeth with a manual toothbrush. I gave birth to my son. and an MRI scan later. My doctor thought it could be a benign tremor and prescribed me with high blood pressure tablets to try to ease my symptoms. By this time I was married to Pablo and had my daughter Isabel. Apart from depression and excessive tiredness. who was diagnosed with Parkinson’s in 2007 at the age of 34 A week after my 21st birthday. Ben. 13 . Shortly afterwards. I ended up passing out at the top of the stairs and falling from top to bottom! I was then referred to a specialist. Then I started to stutter and my leg began to drag. was a relief. I knew next to nothing about it or the implications of having it. After waiting for what seemed like an eternity. but in honesty. it was an illness for older people. particularly if I was stressed. that was obviously wrong. I was becoming increasingly tired in the afternoon and my arm shook if I undertook anything energetic. finding out I had this condition. I met the neurologist who said without a doubt it was Parkinson’s. Well. I was reassured it was a nerve damaged in childbirth and thought no more about it. I couldn’t write very well.My life with Parkinson’s by Andrea Stott. tired or unwell.

What drug treatments are available? Medication is the main treatment for Parkinson’s and there are several types of drugs available that work in different ways to help control the symptoms. and occupational therapy. in this section we answer commonly asked questions that people have about the medical treatments. is recommended to ensure that you remain as independent as possible. physiotherapy. However.Medical treatments Although there is no cure for Parkinson’s at present. treatment depends very much on individual need and will be subject to change over time. A multidisciplinary team approach. surgery. involving several different health and social care professionals. therefore. Parkinson’s is a complex condition and. as this is contained in other PDS publications. including: • levodopa • dopamine agonists 14 . These include drugs. This booklet does not give detailed information on the medical options available to treat Parkinson’s. many treatments are available to help control the symptoms and enable people to maintain a good quality of life. speech and language therapy.

your regimen is likely to be different from another person with Parkinson’s – in terms of the drug(s) prescribed.• catechol-O-methyl transferase (COMT) inhibitors • monoamine oxidase-B (MAO-B) inhibitors • anticholinergics • amantadine These may be used on their own or in combination. which describes all the medication options that are currently available to treat Parkinson’s. If you have a complicated regimen or find it hard to remember when to take your medication. Don’t be afraid to ask your doctor or PDNS if you are unsure about anything. the dosage and the times of the day that you take them. As it does so. Adjusting to a life where you must take medication every day can be challenging. they are not a cure and the condition will continue to progress. you may find it helpful to use a pill box with a timer. although the drugs currently available can be very effective. • See also the information sheet Pill Timers (code FS53). Research continues to expand the medication options for people with Parkinson’s all the time. Want to know more? • See the PDS booklet The Drug Treatment of Parkinson’s Disease (code B013). As each person with Parkinson’s is different in terms of how the condition affects them and their response to treatments. Make sure you have all the information you need about the drugs you have been prescribed. your drug regimen may need to be adjusted or new drugs added to improve symptom control. 15 . However.

a common problem and one that the PDS is campaigning on. it is essential that those looking after you are made aware of your condition as soon as possible to ensure that appropriate treatment can be given. along with any other considerations (such as needing someone to look after any animals. and the name of your doctor 16 . they should also be able to advise further and perhaps liaise with the hospital staff before you are admitted. It is a good idea. How can I ensure that people know I have Parkinson’s and what medication I take if I have an accident? In the event of emergency admission to hospital. to use the form that is included in the PDS’s information sheet Going into Hospital (code FS61) to list your drugs and your needs. Talking to other people with Parkinson’s about their experiences and how they overcame any problems may also help. If you have a PDNS. and has been for some time. unfortunately. who to contact in an emergency. • There is also the information sheet Hospital Stays: Information for Professionals (code FS62).I was in hospital recently and had a lot of trouble getting my medication on time. There are many things you can do to help prevent this happening again. Want to know more? • See the PDS ‘Get it on time’ materials and the information sheets Going into Hospital (code FS61) and Anaesthesia (code FS36). How can I prevent this happening again? This is. particularly if you live alone. which are detailed in the resources listed below.

and any other professionals involved in your care). a relatively rare side effect. Some people also find that wearing a MedicAlert bracelet or pendant can be useful. alcohol consumption. Is this true? It is thought that there may be a connection between some dopamine agonists (a class of drugs used to treat Parkinson’s) and an increase in gambling and/or other types of compulsive behaviour. There is also a PDS alert card (code M14). I have read that some drugs used to treat Parkinson’s can cause people to gamble. The PDS produces a Medication Card (code M1) for people to carry with them in a purse or a wallet. such as a handbag or wallet. This is. your doctor’s number and other emergency contact details. estimated to affect up to 14% of people with Parkinson’s who are on these drugs. 17 . compulsive eating and risk-taking behaviours. This has space for you to put details of the drugs you are taking. Hypersexuality can also be a feature. which contains some brief messages to help people with Parkinson’s who may have communication difficulties when they are out and about. These will alert people to your particular health issues if you are unable to communicate for any reason. including increased spending. or by the telephone in case you are unable to communicate your needs in an emergency. however. This should be kept in an accessible place. especially in the event of an emergency admission. These are items of jewellery that provide contact details and medical information if someone is involved in an accident.

Can certain types of medication cause Parkinson’s? A condition with symptoms similar to Parkinson’s – drug-induced parkinsonism – that is caused by taking certain medications. Treatment may include reducing the dose or changing the type of anti-Parkinson’s medication. Anyone concerned about any obsessive-compulsive behaviour they are experiencing should discuss this with their doctor or Parkinson’s specialist as soon as possible. Any drug that blocks dopamine (the chemical messenger that is in short supply in the brains of people with Parkinson’s) can have this effect.Some studies have suggested that other types of anti-Parkinson’s medication can also produce similar side effects in a relatively small group of people. 18 . If you are concerned about drugs you are taking. Want to know more? • See the PDS information sheets Compulsive Behaviour and Parkinson’s (code FS77). These include those used to treat serious psychiatric problems and some of the drugs used to treat other problems such as dizziness. nausea and high blood pressure. we suggest you discuss this further with your doctor. The person’s family should also be made aware of the potential problems associated with these drugs. and psychotherapy. Gambling and Parkinson’s (code FS84) and Hypersexuality and Parkinson’s (code FS87).

in some people. What surgery is available to treat Parkinson’s? Surgical techniques have been used to treat Parkinson’s since the 1930s. which have enabled surgeons to pinpoint target sites in the brain more exactly. there have been further advances in surgical techniques.Want to know more? • See the PDS information sheet Drug-induced Parkinsonism (code FS38). Surgery does not provide a cure or slow down progression of Parkinson’s but. The early procedures were risky and were largely abandoned once the drug levodopa became an established treatment for the condition in the late 1960s. you should discuss this further with your doctor. can provide good symptom control. as well as developments in neuroimaging and computer technology. If you are interested in surgery as a possible treatment for your Parkinson’s. In recent years. Want to know more? • See the PDS booklet Surgery and Parkinson’s (code B123) and the information sheet Deep Brain Stimulation (code FS12). Because of the risks involved. surgery is mainly used to treat people who have had Parkinson’s for several years (with drugresistant symptoms) or those who are finding that drugs no longer control their symptoms. 19 .

20 . district nurses. and helping you to access the services you need. The service that they and their team provide is known as primary care. It is the recommendation of the National Institute for Health and Clinical Excellence (NICE) that all people with Parkinson’s should see a specialist for confirmation of the diagnosis and drug management. including doctors. therefore. providing you with treatment and health advice. They usually work with a team that may include practice nurses. Specialists. Multidisciplinary working.What kind of doctors may be involved in my care? The first port of call for anyone who suspects that they may have Parkinson’s is their general practitioner (GP). PDNSs and therapists. therapists and counsellors. You can only access them. even if you go privately. The service provided by doctors and other healthcare professionals working in hospital settings is known as secondary care. health visitors. is recommended for Parkinson’s. often run Parkinson’s clinics involving many other health professionals. Your GP will play a key role in your long-term care once you have been diagnosed with Parkinson’s. involving a variety of health and social care professionals. if you have a referral from your GP. Doctors who specialise in Parkinson’s tend to be either neurologists or consultant physicians with a particular interest in the care of older people. They have a great deal of knowledge about many aspects of healthcare and should work closely with any specialist doctors you see to manage your care.

linking their patients to professionals and services that can help them • developing care plans • helping with drug management • providing information and education on the condition to people with Parkinson’s. To access them you usually have to be a patient of a doctor who they work with. The PDS Helpline can advise you whether there is a nurse specialist in your area. Unfortunately. or a combination of the two. carers. and health and social care professionals • problem solving • providing emotional and lifestyle support • providing support when the person with Parkinson’s is admitted to hospital 21 . PDNSs support people with Parkinson’s and their families by: • assessing the person with Parkinson’s and identifying their needs – they often act as key workers. although some nurse specialists have an open access policy. but the PDS is working with hospitals and primary care trusts to increase their numbers.What does a Parkinson’s Disease Nurse Specialist do? PDNSs have expertise in Parkinson’s and its treatment and they work in hospitals or the community. they are not yet available in every area.

side effects and other difficulties you have. • Make a list of the questions you want to ask your doctor. It may help to hand the list to them at the appointment. It is much better to admit that you don’t understand than to pretend you do and then find you don’t know what you are supposed to do when you get home. it is important that you are able to speak to your doctor about anything you find difficult or don’t understand.I find it hard to talk to my doctor. • Keep a diary of symptoms. to ensure that you obtain the best treatment possible. However. including the bottle or packaging. particularly if you are on a complicated regimen. This can help you to describe your experiences to your doctor. Can you give me any tips? This is a problem that affects many people with Parkinson’s. • Don’t feel you have to use medical ‘jargon’. • Bring your medication with you. Keep them as brief as possible. ask them to explain them to you. just use the words you feel comfortable with. It can be hard to remember the names of each one. • Take a leaflet or other information with you that describes the problem you want to discuss as a starting point. If the doctor uses terms you don’t understand. • Use the PDS’s Non-motor Symptoms Questionnaire (code B117) to help your doctor diagnose any non-motor problems. • Take someone with you to give you moral support or to act as an advocate for you if you find it hard to communicate. The following tips may help: • Prepare yourself for the appointment beforehand and think about what you want to gain from it. and take notes. 22 .

23 . However. If you really can’t communicate with your doctor or you find them unsympathetic. Your local primary care trust’s Patient Advice and Liaison Service (PALS) should be able to advise you further.• Remember that however embarrassing you feel your query is. • Visit www. • See How to Get the Best from Your Doctor by Dr Tom Smith. • See The Patients Association booklet You and Your Doctor. Want to know more? • See the PDS information sheets Talking to Your Doctor (code FS71) and Keeping a Diary (code FS69). Doctors are used to dealing with all kinds of problems and they can’t help you if they don’t know what is really worrying you. You can do this at any time without giving a reason. the answer may be to change your GP. you won’t be the first to ask. This could be to change to another doctor in the same surgery or you could approach another GP practice and ask if you can register. the GP surgery is under no obligation to accept you or to give a reason for this.com – a website that provides information and advice on embarrassing health problems that you may find hard to discuss.embarrassingproblems.

About an hour before a dose is due. Over time the individual may experience increasing periods when the effect of the most recent dose wears off before the next one is due or has begun to work. and the next they would be completely frozen. Having Parkinson’s myself has only served to reiterate how vitally important medication is to somebody with the condition. who was diagnosed with Parkinson’s in 2003 at the age of 43 When I was working as an occupational therapist. I would find that if a person had taken a dose late or missed a dose before I saw them. because of the differential. progressive nature of the condition. 24 . One minute the individual would be able to go about their day-to-day activities. Often it takes some time to establish the most appropriate drug treatment for an individual and even then it remains optimal for a variable length of time. the main thing that hit me whenever I was working with a person with Parkinson’s was the importance of the timing of medication. there would be next to nothing I could do as a therapeutic intervention to make an immediate difference to their wellbeing. Involuntary movements may appear and there may be sudden switches from being ‘on’ and able to move to being ‘off’ and immobile. I start getting jittery and if I take a dose late. This would obviously impact on my work as an occupational therapist and how effective I could be.My life with Parkinson’s by Tina Walker. day-to-day tasks become increasingly difficult for me to perform.

psychologically and spiritually – and how these are affected by Parkinson’s • the support that is available to you • the effect the condition has on your relationships Although each person with Parkinson’s is very different. it is the emotional and psychological effects of Parkinson’s that are the most difficult to cope with.Emotional and psychological effects For many people. They may: • have a sense of relief that there is a reason for the problems they have been experiencing 25 . the time around diagnosis and just afterwards is recognised as being difficult for most people. emotionally. including: • the symptoms you experience and what impact they have on the activities you do • your response to treatment • the age you are at diagnosis • your personal circumstances • your personality and approach to life • what matters most to you – practically. How your life is affected will depend on many factors. The feelings that people have when they are diagnosed vary and can sometimes be conflicting.

make sure you find some support for yourself before the situation reaches crisis point. over time. If you have just been diagnosed. Don’t make any major decisions about your life until you have had time to accept the diagnosis and have found appropriate sources of information and support.• feel devastated. If you are finding things difficult. many people find that their emotions fluctuate and sometimes they have low periods when they feel down or depressed. such as having to give up work. give yourself time to adjust to the news. hide it or have trouble telling their families or friends Acknowledging your feelings and accepting the diagnosis is the first major step in living successfully with Parkinson’s. as the condition progresses. depressed and/or anxious • not accept what is happening. When this happens. How do I find someone to talk to? Talking to someone about how you feel about your situation can help you to acknowledge the emotions you have. especially if these feelings coincide with major changes in their life that they do not welcome. Sometimes I find living with Parkinson’s emotionally difficult to cope with. Many people find that they are able to cope more easily with the practical 26 . In the early stages of Parkinson’s. angry. many people find that their symptoms are mild and can be managed effectively with the treatments that are available. However. find ways of expressing them and identify solutions to help overcome any difficulties you have. it starts to impact more on a person’s life.

It is not about giving advice. what you find hard to deal with and who you feel most comfortable with. there are also several discussion forums on the internet. 27 . such as a partner.day-to-day issues that Parkinson’s throws at them once they have found ways of managing its emotional and psychological effects. However. but providing space and time for you to explore your feelings and behaviour in order to gain insight into what you find most difficult and why. including details of private counsellors. You may choose to talk to someone who knows you well. some people prefer to discuss how they feel with someone who is not closely involved in their life – perhaps someone else with Parkinson’s or a carer they have met through a local PDS branch or the Younger Parkinson’s Network (YPN). accept your situation or make changes to your life. This can help you to resolve your feelings. Who you talk to depends on your personal circumstances.uk Discussing your feelings with a health or social care professional is another approach. relative or friend.parkinsons. This might be a PDNS. If you don’t want to meet people face-to-face or if you live in an area with no support group nearby.org. Counselling involves using psychological or talking therapies to help you look at your life and the feelings you have. There are also several counselling organisations that can provide you with further information. Some people also find it helpful to talk to a professional counsellor. Many GP surgeries have counsellors attached to their practice or can provide you with information about other local sources of counselling. a PDS Helpline adviser or a local PDS Information and Support Worker. These include Relate and the British Association for Counselling and Psychotherapy. a therapist. including the online forum at www.

which discusses what counselling is. Times of change. may also be connected to Parkinson’s.Want to know more? • Author and adviser Denise Robertson writes a regular column on emotional issues for The Parkinson. Depression in Parkinson’s is complicated. sleep and appetite disturbances. serotonin and noradrenaline. what it involves. antidepressants (some are more 28 . Recent research has suggested that the other two. can also have a significant impact on outlook and mood. such as giving up work or activities once enjoyed. Is depression common in Parkinson’s? Depression affects as many as 30–40% of all people with Parkinson’s at some stage. how it can help. Symptoms may include low mood and lack of motivation. Biological changes in the brain may be partly responsible because dopamine. difficulty in concentration and lack of energy. is one of three that are involved in the biochemistry of depression. In addition. depression for many people will be a response to living with the condition and the changes that it may bring to their life. Some people are particularly vulnerable to depression as the condition progresses and symptoms get more pronounced. the types available and how to find a counsellor. • The mental health charity Mind publishes a comprehensive guide. the PDS membership magazine. Treatments for depression in Parkinson’s may include adjusting the anti-Parkinson’s medication. the chemical messenger that is in short supply in the brains of people with Parkinson’s. There is a small charge for this publication. Making Sense of Counselling.

• The Royal College of Psychiatrists publishes several accessible guides to mental health issues. such as the Depression Alliance and Mind. With Parkinson’s. However. they can make people afraid to do everyday things because of a possible attack. You should discuss this problem with your doctor. Are panic attacks common in Parkinson’s? Panicking is one of the body’s defences and is a natural reaction to fear or danger.g. however. a form of psychotherapy. Treatment strategies include medication and cognitive behavioural therapy. They can also be a side effect of some medications. they can be caused by anxiety about the condition and your ability to manage in certain situations. A surge of adrenaline is released that makes you alert and ready for action. counselling or other psychological treatments. but they don’t actually harm you. • Support is available from mental health organisations. counting 29 . Want to know more? • See the PDS information sheet Depression and Parkinson’s (code FS56). including depression. Relaxation techniques can also help. e.suitable than others for people who have Parkinson’s). experience panic attacks for no apparent reason. • PDS Helpline advisers who can provide a listening ear if you’d like to speak to someone about how you are feeling. Some people. if needed. Panic attacks can be frightening. exercise and relaxation. unless controlled.

job. For others. Want to know more? • See the PDS information sheet Anxiety and Parkinson’s (code FS96). it involves a religious faith or culture that influences how they lead their life. yoga or meditation. it is a positive experience – one that strengthens their beliefs and/or gives them a new appreciation for what is important to them. A long-term condition like Parkinson’s can have significant effects on a person’s spirituality. Unfortunately. their beliefs and sometimes their attitude to disability and ill health.slowly in your head. listening to soothing music. interests. a warm bath. others find it hard to hold onto their faith because it makes them question everything. For some. First Steps to Freedom and Anxiety UK. etc. The useful contacts section at the back of this booklet has further details of these organisations. For some. I used to have a strong faith but this has been thrown into question. What can I do? Spirituality is a very important part of many people’s lives. football team. • Other organisations that can provide support include No Panic. • The mental health organisation Mind has a leaflet on panic attacks. 30 . it is more about their sense of self and attitude to life or the things that are important – their family. especially if they have had to give up something that gave them great satisfaction and was a large part of their identity – such as a job or interest.

If these are issues for you. For instance. Other people with long-term illnesses have highlighted the books by Bernie Siegel (a cancer surgeon) and Rachel Naomi Remen (a doctor and counsellor.Very little has been written about spirituality and Parkinson’s.uk • Self-help books may help you explore this subject in more detail. Want to know more? • The Royal College of Psychiatrists has a leaflet Spirituality and Mental Health. 31 . and because both are such individual experiences. You may also have a religious faith or be from a culture that means that you have particular attitudes or requirements regarding certain medical treatments or procedures. who has a chronic illness herself) as being helpful to them in exploring spiritual issues. Visit www. PDNS or the other health or social care professionals who are involved in your care.ac. dietary factors might also be an important consideration if you have to go into hospital or for respite care. you have to find solutions to suit your particular needs.rcpsych. discuss them with your doctor.

Strangely enough it was depression. not me. but. but not mixing with others with Parkinson’s. he spotted my low mood. To my surprise. I coped very well. having embarked on a new career after a period of staying at home and looking after our three children. It had been a challenge studying to be a nurse – little did I know that I was about to face a bigger challenge in Parkinson’s. not hiding my condition. Only this year did I feel that the condition was winning the battle. I can now focus on the positive aspects of my life with Parkinson’s – such as lots of quality time with my twoyear-old grandson. I was working as a registered general nurse on a busy surgical ward. I was moderately depressed and commenced yet another lot of pills! It has taken over seven months to be back to ‘normal’ and fighting the good fight yet again. I am here for my pregnant daughter. I admitted I was not very happy. I went on my way with an assessment that would inform me if I needed medication and a prescription – just in case. After ringing the PDS and the YPN – and reading what was in the library – I got on with life.My life with Parkinson’s by Susan Kell. not Parkinson’s – although it is associated with the condition – that made me wave the white flag and surrender. Fortunately I have an excellent GP and during a consultation. spend more time with my husband and still have an active social life. I’m not depressed”. 32 . “no. who was diagnosed with Parkinson’s in 1997 at the age of 43 I was diagnosed on 6 March 1997 – you don’t forget dates like that. Initially.

and to discuss these with your partner. Some people are very fearful and assume that they will become very disabled very quickly. friends and the health or social care professionals involved in your care. 33 . Relationships can be affected by many factors. family. including the following. Others find them difficult and feel an increased strain on their family relationships. Reaction to diagnosis Reactions to diagnosis and individual expectations of Parkinson’s are very varied. Some people find that they are able to adapt to these changes and find ways of accommodating them in their lives. and can occur at any stage in the condition. which can lead to conflict. Sometimes. in particular. others expect only minimal effects. It is important to obtain as much information about Parkinson’s as you can to ensure that your expectations are as realistic as possible. the person with Parkinson’s and their partner or family have different expectations and responses.Relationships Changes to relationships of all kinds – personal and professional – are common when someone has Parkinson’s.

Changing roles within a relationship
When someone has Parkinson’s, there may be changes in relationships and roles within partnerships and families that result in people taking on different responsibilities or even reversing their roles. This can be difficult for all concerned. Partners and family members can feel pressured by these changes, and the person with Parkinson’s can miss the roles they had or even feel that they no longer have one. This can lead to feelings of hostility, resentment, guilt, loss and powerlessness within a relationship.

Communication
Parkinson’s can affect all types of communication – verbal, facial expression, body language and writing. The loss of these skills can have a profound effect on personal and professional relationships. Lack of facial expression or body language can present a misleading picture to other people – they may think that you are uninterested or unresponsive when this is not the case, and this can cause misunderstandings. Some people also find it harder to make intimate gestures, such as squeezing a hand, that form part of the relationship they have with their partner.

Social isolation
Without support, some people with Parkinson’s can become withdrawn and introverted, especially if they have trouble communicating. Feelings about loss of social standing within the family group and/or workplace can lead to a reduced sense of self-worth and a reluctance to socialise – particularly if they feel that their symptoms stand out and they are embarrassed by them. The situation can be made worse if family or friends are unsupportive, or lack understanding, or if reactions from members of the general public are unsympathetic.

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Symptoms of Parkinson’s
Symptoms such as depression and fatigue, which are common in Parkinson’s, can have significant effects on relationships. Mood swings can also occur as a result of fluctuations in dopamine levels within the brain and may be linked to the timing of the drugs. Changes in mood can be very dramatic. When the medication is working, the person can feel relaxed and positive about their situation. When it is not working, feelings of anxiety and pessimistic thoughts can dominate. This can be very difficult to live with – for the person with Parkinson’s and their family.

Tips for dealing with change
• Talk through your feelings with each other without trying to apportion blame. • Although some roles may have to change, in most cases, work can still be shared so that neither person carries all the responsibility. • Work together to find solutions that everyone is happy with. A degree of flexibility and compromise on the part of all concerned may be a necessary ingredient of this process. • Decide what your priorities are and concentrate your energies on these. • Drop, change or find help with activities that are not so important. • Seek help if you are finding it difficult to resolve issues. Professionals, such as occupational therapists, PDNSs, PDS Information and Support Workers, PDS Helpline advisers, counsellors and psychologists, may be able to offer support and advice. • Talk to other people with Parkinson’s and their families who have experienced similar problems.

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• Retain your sense of humour. This will help you keep things in perspective and lighten stressful moments. • Don’t let Parkinson’s dominate everything you do. Make sure you enjoy shared activities, even if you have to adapt them to make them easier. • Get support before difficulties reach crisis point. • Remember that the effects on relationships are not always detrimental. The PDS has met many couples and families who say that their relationships have been greatly strengthened by their experiences of coping with Parkinson’s together.

Want to know more?
• See the PDS information sheets Communication (code FS06), Depression and Parkinson’s (code FS56) and Fatigue and Parkinson’s (code FS72). • Parkinson’s Disease: A Self-Help Guide for Patients and their Carers by Marjan Jahanshahi and C David Marsden has a particular focus on the psychosocial effects of having Parkinson’s and contains tips and other useful advice. • Another useful resource is Living with a Long-Term Illness: the facts by Frankie Campling and Michael Sharpe, which includes several chapters on emotions and interpersonal relationships.

What effect does Parkinson’s have on sex and intimate relationships?
Sex is important to most people, whether they have Parkinson’s or not. A diagnosis of Parkinson’s may affect your sex life, but it doesn’t mean that sexual problems are inevitable. Surveys have, in fact, shown that the main causes of problems in the sex lives

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Parkinson’s interferes with freedom and fluidity of movement and can make gestures less spontaneous. A spouse or sexual partner who doesn’t have Parkinson’s may also find it difficult to make the transition from providing practical support to being intimate sexually. including achieving orgasm • increased desire for sex as a rare side effect of the medication 37 .of people with Parkinson’s are the same as those that affect the general population. other causes are more directly related to the condition itself. as they may not always be steady enough to give a hug or lean over to give a kiss. The following factors affect us all and can impact on our sex lives: • Tiredness • Stress • Financial worries • Concerns about the future • Worries about self-image • Lack of communication However. The types of problems that people with Parkinson’s can experience include: • lack of interest in and desire for sex • lack of arousal • difficulties with the act itself. Showing affection may sometimes be harder for a person with Parkinson’s. Stress and anxiety experienced by either party can also be major contributors to problems with intimacy and sexual relationships.

but the condition itself shouldn’t stand in the way of an enjoyable and fulfilling sex life. is a vital part of any good relationship. Your approach to sex may have to be slightly different with Parkinson’s.g. 38 . • Many people say that keeping a sense of humour helps dispel some of the tension and keeps things in perspective. Intimate Relationships and Parkinson’s (code B034) for more information.Surveys have shown that these problems are more likely when it is the man who has Parkinson’s. • Discuss the problems you are having with your doctor or PDNS. but try not to be embarrassed. Healthcare professionals are used to dealing with such concerns and you won’t be the first to ask! • Above all. Tips for managing these problems • Talk to your partner about any problems that you are experiencing. e. such as Relate. Accepting the need for this type of help and asking for it can be very difficult.g. e. relationship counsellors. • There are a number of ways to tackle the physical problems that can occur as a result of having Parkinson’s. Want to know more? • See the PDS booklet Sex. They may be able to refer you to other sources of help. Communicating your feelings. especially any worries or concerns. changing the times of the day that you have sex. as soon as they happen. trying different positions and adapting your approach to sex. communicate. Some people find that better communication is all that is needed to resolve their problems – especially if they communicate early on and don’t allow things to deteriorate. psychosexual therapists or counselling organisations.

or via the PDS online forum at www.I am single. some of the likely causes of problems in sexual and intimate relationships are common to everyone – whether they have Parkinson’s or not. As already stated. Most people in a similar position have said that honesty seems to be the best policy. How will Parkinson’s affect any future relationships I may have? There is no reason why future emotional. sexual and intimate experiences shouldn’t be positive. depends entirely on what you feel is right for you.uk 39 .org. What you tell prospective sexual partners. You may find it helpful to talk to other single people with Parkinson’s at local PDS branches and YPN groups.parkinsons. and when.

40 .My life with Parkinson’s by Catherine Benford. We married in September 2007 and now have a little boy – Jacob Isaac. and cram as much into life as I possibly can. knowing that I wasn’t terminally ill. I met a person who I never dreamt existed for me. and have experienced things in life that most people could never imagine. Years later. living with Parkinson’s is hard. As my mum sighed with relief. I can be off work for months at a time. but life is what I make it. and supportive of my every decision. who was diagnosed with Parkinson’s in 1996 at the age of 25 My mum and I were asked into the consultant’s office and it was there that my life changed for ever. I live for today. He has changed my life completely. We headed home to tell my dad and sister. I have been through a divorce and a miscarriage. he is there every step I take. through everything I stay strong. my Parkinson’s has progressed. I just have to live with my Parkinson’s and that’s what I intend to do. There’s no denying. We had been told something that would change our lives for ever and were all in complete shock. I’ve got what?” I replied. He is my perfect partner. We wanted to carry on as if nothing had changed … for a short time anyway. He’s kind and loving. There were lots of tears. because the condition is so different for everyone. I could hear nothing and was in shock. In February 2006.” he said. “I’ve got what? At 25. But each day is different and although I can get low times. It is really hard to imagine the future – I don’t know what it holds. “You’ve got Parkinson’s disease.

They may reach their own conclusions. many parents wonder whether or not to tell their children about their illness. as they may worry more about what they don’t know than what they do. • Make the explanation simple and appropriate to their age. These tips from parents and psychologists may help: • Be open.Being a parent How do I talk to my young children about Parkinson’s? Many younger people with Parkinson’s have young or teenage children who will have questions about Parkinson’s and how it is likely to affect their parent in the future. Don’t give 41 . You may know it is not contagious. Don’t hide the condition from your children. but are they 100% sure? • Remember that children need to feel that they have some control over how much information. what is the best way to do this and how much to say. they receive and when. and if they decide to tell them. • Be specific and clear in describing the condition and don’t assume anything. honest and realistic with them. which in some cases may cause them more anxiety than the truth would. After diagnosis.

42 . • Reassure your children that it is extremely unlikely that they will develop Parkinson’s. • The chapter on young-onset Parkinson’s in the book Parkinson’s Disease: A Self-Help Guide for Patients and their Carers by Marjan Jahanshahi and C David Marsden includes a section on children and their reactions to parental illness. • PDS publications for children and young people include: – a range of books for children with a parent or grandparent who has Parkinson’s – Parkinson’s: The Facts – a guide for young people aged 11–17 years • I’ll Hold Your Hand. or are worried about their reaction or how they are coping with Parkinson’s in the family. Want to know more? • See the PDS information sheet Talking to Children about Parkinson’s (code FS66). You Won’t Fall Down: a Child’s Guide to Parkinson’s Disease is a book written by Muhammad Ali’s daughter. Rashida. • Seek further advice and support if you are finding it hard to tell them. • Talk to other parents in a similar position through the YPN.them too much information but make sure they know that they can discuss Parkinson’s with you and ask questions at any time.

Does Parkinson’s affect a man’s ability to father children?
We are unaware of any scientific research looking at male fertility and how Parkinson’s might affect this. However, we know of several men with Parkinson’s who have fathered children since being diagnosed with the condition. This includes Michael J Fox, the well-known actor and Parkinson’s campaigner.

What effects do Parkinson’s have on pregnancy in someone with the condition?
The very small number of cases of pregnancy in Parkinson’s reported in medical journals means that there are problems with predicting what happens to women with Parkinson’s when they become pregnant. The available evidence from recorded cases is not particularly helpful, in that it simply states that some women’s symptoms worsen and some do not. It is encouraging to note, however, that the majority of the cases written about ended in successful, full-term delivery of healthy babies. The following advice may be useful in coping with some of the problems encountered by women with Parkinson’s who are pregnant: Balance problems – consult your health visitor for advice on posture and, if necessary, a physiotherapist for advice regarding balance and the use of a walking aid, if required. Slowness of movement – allow more time to perform daily tasks. Remember, you will probably feel more fatigued than usual, so this will have a dual benefit. Nausea and vomiting – consult your GP or hospital team for advice. It is advisable to point out to them (as they may not be aware)

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that Maxalon and Stemetil should NOT be given to anybody with Parkinson’s. In addition, small, frequent meals six to eight times daily are advised, as well as avoiding high-fat and very spicy foods. Starchy foods, such as bread (toast) or dry breakfast cereals, can help with nausea. Constipation – remember to drink plenty of fluids and have a diet rich in fibre to reduce the risk of becoming constipated. Remember, caffeine in drinks such as tea, coffee and cola can make you want to pass water more often and should be avoided. Fatigue – try to get eight hours sleep every night, and rest during the day when possible. Any woman with Parkinson’s who becomes or wishes to become pregnant should discuss this with her neurologist, obstetrician and PDNS at the first opportunity.

Want to know more?
• See the PDS information sheet Pregnancy and Parkinson’s (code FS19).

I am a single parent with Parkinson’s. How will I cope?
Being a single parent can be a challenge at the best of times, but when you have Parkinson’s, it can be a real test. However, many people do manage this situation well and there is no reason why you shouldn’t too. Many lone parents find it helpful to exchange ideas and tips with others in a similar position through the YPN. There are also organisations to support lone parents.

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Our lives with Parkinson’s
by Andrew Charles, who was diagnosed with Parkinson’s in 2006 at the age of 42 I saw my doctor because of stiffness in the left leg and arm – I was referred to a specialist neurologist who diagnosed Parkinson’s there and then. After this, I fell into a deep depression that lasted about six months. It took over my life, turning me into a recluse: unshaven not wanting to do anything; in a zombie state. I have three girls, who were aged 14 to 17 at the time. My youngest took it the hardest: “Why my dad? He hasn’t done anything to hurt anybody”. But with the help of booklets, we got a better understanding, bringing my family closer. My girls would be my minders, looking out for me when we went places. There is no easy way around Parkinson’s, but tell you children – don’t hide it, don’t bury your head in the sand. Your life will change, but through the PDS I have many more friends than ever. and Jennifer Charles, who was 16 when her father was diagnosed with Parkinson’s When I found out that my father had Parkinson’s, I was very unsure about what it was and how it would affect him. Once my parents explained to me what Parkinson was, I was very upset and didn’t know what to say or do to help my father. But in a short time, I learnt that he hadn’t really changed, except he would have a bad day now and again. On these days, I try to help out as much as possible. The main way I found to deal with the feelings I had about Parkinson’s was to just talk to my dad. The overall effect Parkinson’s has had on the family is that it has brought us closer together, but it was very hard at first.

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Living on your own Will I be able to manage my Parkinson’s if I live on my own? Many people with Parkinson’s live alone through choice or circumstance. provided that you have the appropriate support to help you with the activities that you find difficult. you may wonder how you are going to cope. such as being your own free agent and not having to worry about being responsible for another person. there is no reason why you cannot continue to live on your own. 46 . Physical difficulties You may have physical problems that compromise your independence and make managing at home harder. However. These can often be overcome or made easier and safer by adapting them in some way or by using aids and equipment. There can be advantages. Although some aspects of your lifestyle may become more challenging. Support may also be available through your social services department. An occupational therapist can advise further.

such as reduced council tax. at work or at leisure that you are finding difficult. If you find it difficult to cope emotionally. you may be entitled to certain benefits if you live alone. unless they have a strong network of family and friends to support them. such as the PDS online forum. can be particularly prone to depression. whether you are working or managing on a pension or disability benefits. don’t struggle on alone – contact your doctor. • Discuss any difficulties you are experiencing as a result of living alone with your GP. These tips may also help: • Don’t assume that living alone is impossible now that you have Parkinson’s – many people manage very successfully with the right support. Many people who live on their own find much-valued friendship and support through PDS local branches. YPN groups and internet discussion groups. loneliness and isolation. Remember that even if you are still working. hospital consultant or PDNS. Make sure that you are receiving the financial support that you are entitled to. Emotions Anyone who is living alone and has a long-term health condition. 47 . such as Parkinson’s. • Seek advice from an occupational therapist about any activities around the house. PDNS or the PDS Helpline for support.Finances Living alone can be difficult financially.

• Take advantage of events. local paper and Citizens Advice Bureau.parkinsons. The PDS website gives details of local Parkinson’s support and upcoming events. • PDS branches and YPN groups can offer you friendship and support. • Share your experiences with others in a similar position through the PDS online forum – www.uk/forum – and other internet support sites. More information is available from your local library.org. activities and support that may be available to you locally. • Make the most of any existing support systems you have. Your local Citizens Advice Bureau can also advise further. The PDS publishes a range of rights and benefits information sheets and the PDS Helpline has a dedicated advisory officer for benefits and employment. such as family and friends.• Check that you are receiving all the benefits you are entitled to. Want to know more? • See the PDS information sheets Living Alone with Parkinson’s (code FS29) and Depression and Parkinson’s (code FS56). 48 .

Adjusting medication can sometimes help with some communication problems. cramped and difficult to read. As a result. A speech and language therapist can advise on speech and non-verbal problems. and there may be an absence of gestures such as nodding. About 50% of people with Parkinson’s also develop difficulties with speech and non-verbal communication. and an occupational 49 .Communication What effects does Parkinson’s have on communication? Problems with handwriting can be one of the earliest signs of Parkinson’s and are usually caused by tremor and lack of co-ordination. body language may lack spontaneity. The loss of these communication skills can have a profound impact on the relationships of a person with Parkinson’s (see the section ‘Relationships’ for more information). Writing can become small. Speech may become slurred or monotonous with lack of variation and the voice may lack expression and volume. Facial expressions and body language can also be reduced through muscle rigidity and slowness of movement. expressions such as smiling or frowning may become more difficult.

swallowing or drooling. swallowing and drooling problems. Handwriting and Parkinson’s (code FS23) and Speech and Language Therapy (code FS07). Referral is often via your GP. non-verbal communication (including facial expression and body language). to improve communication. 50 . • Some people also find it helpful to keep a PDS Alert Card (code M14) in their purse or wallet for times when they have difficulties communicating. This may include speech problems. How can a speech and language therapist help me with communication problems? Speech and language therapists specialise in assessing and treating the communication and swallowing problems that people with Parkinson’s often experience. as well as exercises. although in some places you can refer yourself to an NHS speech and language therapist via your local hospital or health centre. They may also work privately. This is a small. credit card-style card which explains that the person carrying it has Parkinson’s and may have difficulties with communicating. They can also advise on activities that you may find particularly difficult. Want to know more? • See the PDS information sheets Communication (code FS06). They may suggest techniques involving breathing and posture. such as talking on the telephone.therapist (see the section ‘Independence and daily living’) on handwriting problems. hospital consultant or PDNS. and eating.

The writing may be ‘spidery’ and difficult to read. relaxing. An occupational therapist can advise you further on handwriting problems. Some people find that when they start writing the size of their handwriting is normal. which can be one of the first symptoms of Parkinson’s. breathing deeply. pencil or felt-tip pen • wearing a weighted cuff to dampen down the tremor • using a clipboard or non-slip mat to prevent the paper slipping • after writing a line. pushing down through the arms and then starting writing again • using a dictaphone machine or tape recorder to verbalise messages rather than writing • using a computer.Want to know more? • See the PDS information sheets Communication (code FS06). What tips can you give me to improve my handwriting? Many people have problems with handwriting. Some people also find writing impossible because their hand shakes too much. stretching (using wide arm movements). but as they write across the page the writing becomes smaller and smaller (known as micrographia). Handwriting and Parkinson’s (code FS23) and Speech and Language Therapy (code FS07). Practical solutions might include: • writing with a thick or padded pen. stopping for a moment. electronic typewriter or word processor • using voice recognition software 51 .

a voluntary organisation that aims to make computer technology accessible to disabled people. which can be particularly helpful for people with severe mobility difficulties Further advice can be obtained from an occupational therapist or AbilityNet. All kinds of computer courses are usually available from local adult education facilities and colleges. How could a computer help me? Computers can help people with Parkinson’s in a number of ways.Want to know more? • See the PDS information sheet Handwriting and Parkinson’s (code FS23). such as: • with day-to-day correspondence. where you can find support. an adult education service that provides online courses and has a network of centres across the UK. especially if their handwriting is affected • in employment • to keep in touch with friends and make new ones through internet forums • to find information about Parkinson’s and other subjects of interest • for online banking and shopping. 52 . as well as from learndirect.

You may want to gather everyone together and tell them all at once. • Choose when and how you tell people carefully. or you may prefer to tell people gradually as the need arises. Parkinson’s can affect communication and make discussing the condition with people harder. They may be able to provide you with tips. • Tell at least one person close to you. 53 . Some people find it easier to tell people in a letter or an email.How do I tell people I have Parkinson’s and what do I say? Telling people that you have Parkinson’s can be a daunting task. You can contact them via local branches. This will give you someone to talk to about your Parkinson’s who may be able to help you tell other people. In addition. Who you tell and what you tell them depends very much on your own particular circumstances. especially if you are worried about the reaction you are going to receive. YPN groups or the PDS online forum. • Practise what you want to say in advance and prepare yourself by thinking through the possible reactions you may get and how you might feel. Finding the words can be difficult. • Talk to other people with Parkinson’s about how they handled this issue. rather than faceto-face. they will then be defined by other people’s perceptions of the condition or be identified only in terms of it. Some people also worry that if they let people know they have Parkinson’s. and the situations that you find yourself in where telling someone you have Parkinson’s may become important.

many people find talking to others with Parkinson’s at a local PDS branch or YPN group makes a big difference. despite having Parkinson’s. You may want to ask yourself the following questions: People • If you are going out with other people. You may find that more effort is required and that some activities have to be adapted to make them easier. but it is important that you try to continue to lead as active and normal a life as possible. how much do they know about your condition? • Do they need to know that you have Parkinson’s? • Will they know how to assist you if required? • How much support will they require from you? Venue • Have you been there before? • Do you need to know if it’s accessible? 54 . I sometimes feel reluctant to go out and socialise because I am worried about how I am going to cope. you should be able to overcome most difficulties. They can also share tips and ideas for overcoming particular problems with socialising. but with a bit of planning. If embarrassment is the problem.Want to know more? • See the PDS information sheet Telling People about Parkinson’s (code FS88). Any tips? It is common to feel like this.

keep an up-to-date list of the current medication you are taking in your wallet or purse. This is the number of the person that you have chosen for the emergency services to contact if they need to. Mobile phone – make sure that your phone is charged and that you have an ICE (in case of emergency) number in the phone book. Also. Theatres – book seats at or near the end of a row. just in case. try to get someone to walk immediately in front of you to create space. in the event of an emergency. but you decide that you want to stay until late or vice versa? • Do you know how you are getting home? Staying over • Ended up staying the night when you hadn’t planned to? Is there anyone who needs to know? Going out essentials Medication – take more than one day’s supply with you. Large crowds – if you experience difficulties with negotiating large crowds. You can get up and down without disturbing anybody and make a quick exit if you need to.Transport • Have you made arrangements to return home at a specific time? • What if the people that you are with decide to return home early. Your legs will have more room for manoeuvre. 55 .

I put it down to stress. One day in the autumn of 1999. It was a good party and I made a speech and managed to get through it without crying. When I was diagnosed I didn’t find the experience very supportive – it was just “yes. I was in a state of shock and disbelief. I had a party and told everyone in one go. This was followed by a tremor in my arm in certain situations. I also felt a certain shame for having been healthy and then getting remarks from people about my tremor. I remember feeling generally under the weather. I had to sign a pile of letters and I noticed that every time I got to the ‘m’ in my surname. although most of my friends were crying. but then my handwriting changed. but in the end. My husband and children have been very supportive all along. I don’t know why really – partly just not having had the habit of focusing on myself and also fear of hearing something I didn’t want to hear. I started to avoid social situations. I just couldn’t do it.My life with Parkinson’s by Nina Temple. 56 . I still didn’t go to the doctor for a long time. you’ve got Parkinson’s and here are the drugs for it”. decided it was better to face it. who was diagnosed with Parkinson’s in 2001 at the age of 44 Before I was diagnosed with Parkinson’s. It was a very positive thing for me.

and dexterity. falls and immobility. to help treat people of any age who have physical problems because of illness. manipulation. Physiotherapists will be particularly interested in assessing and treating the effects that Parkinson’s can have on mobility – including gait. They may also be involved in managing non-motor symptoms. The methods they use are various but might include exercise. Referral to a physiotherapist is usually via your GP. they may also advise you on ways of managing particular difficulties you are experiencing. activities involving transfers such as getting in and out of bed. How can a physiotherapist help me? Physiotherapists are trained health professionals who use physical treatments. balance. including exercise.Independence and daily living I want to remain as independent as possible. heat and hydrotherapy. hospital consultant or PDNS. ageing or injury. posture. If you want to consider this 57 . maintenance of your functional ability through exercise and relaxation will be a physiotherapist’s main focus. As Parkinson’s progresses and the symptoms tend to become more pronounced. such as pain and sleep. balance problems. Some also work privately. In the early stages of the condition. such as freezing.

58 . They help you to get the most out of life by being able to carry on with the activities that are important to you. shopping. washing and bathing • productivity – paid or unpaid work. social and emotional needs. How can an occupational therapist help me? You may find that you have to make many life changes after a diagnosis of Parkinson’s. and housework • leisure – sports. make sure that they are properly trained – they will have MCSP (Member of the Chartered Society of Physiotherapy) after their name. by looking at their particular physical. • The Charted Society of Physiotherapy can give I want to remain as independent as possible. Occupational therapists have expertise in helping you to adapt to these changes.option. cleaning teeth. You also need to ensure that you see a physiotherapist who specialises in neurology or care of older people and has some experience of treating people with Parkinson’s. How can a physiotherapist help me? Please find their details in the Useful contacts section at back of this booklet. Want to know more? • See the PDS information sheet Physiotherapy and Parkinson’s (code FS42) for more information. These include: • personal care – getting dressed. hobbies and social life Occupational therapists help people with Parkinson’s and their families to identify the problems that are affecting their lifestyle.

you need to make sure that they are state registered (they will have the letters SROT after their name) and have experience in working with people with Parkinson’s.When these difficulties have been identified. • They can work alongside the person and their family to plan the most appropriate daily or weekly routines that will enable them to carry out important activities. staged support programmes. • They can help a person maintain and improve their social life through planned. occupational therapists can assist in the following ways: • They can give advice on the way that the condition can affect everyday life. Your GP. • They can advise on equipment to use at home or at work to enable a person to continue to carry out their everyday activities. • They can provide advice. • They can teach the person and their family new strategies for coping with the physical and psychological problems that may affect everyday life. specialist or PDNS can refer you. or in some areas you can refer yourself by contacting your local social services department. If you go privately. information and support to enable a person to use transport. Occupational therapists work in hospitals and various community settings. community and leisure opportunities to the full. Home visits for assessment and advice are a major part of their work. Some occupational therapists also work in private practice. 59 .

it is important to stress that they are not always the answer and can be very expensive. or treatment. Before purchasing any equipment. they may also include other things such as exercises. who can assess your needs and then make recommendations. Although these recommendations may include equipment. Therapists will only suggest equipment if they think it will help with the particular problems you are experiencing and they should be able to advise you on suppliers and funding. However. • For more information on the work of occupational therapists. Without this assessment. you run the risk of spending considerable sums on equipment that may prove to be unsuitable or that could have been purchased more cheaply.Want to know more? • See the PDS information sheet Occupational Therapy and Parkinson’s (code FS97). a wide range of aids and equipment is available to help people who have disabilities or ill health. you should obtain an assessment from the relevant therapist. You may not need any equipment. What equipment will I need? This depends on the particular problems that you have. • To find a private occupational therapist. 60 . However. contact the British Association of Occupational Therapists. contact Occupational Therapists in Independent Practice. suggesting ways of doing something to make it easier to do. These can be very useful in helping people to manage particular situations or problems.

There is some overlap between the disciplines. In some areas. 61 . Want to know more? • See the PDS information sheet Equipment and Disability Aids (code FS59). by the fact that an occupational therapist will often also advise on equipment • a speech and language therapist advises on anything to do with communication and also on swallowing problems Who you see can depend on the arrangements that exist in your local area for these services. however. The therapist. such as washing. Who pays for the equipment depends on the type of equipment in question.What kind of therapist you see depends on what particular activity you need help with. Your GP. • The Disabled Living Foundation has a range of information sheets on equipment and centres where you can obtain advice from therapists and try out items out before you buy. bathing. your particular circumstances (e. reading and leisure • a physiotherapist advises on mobility problems inside and outside the home – this is complicated. PDNS or local Patient Advice and Liaison Service should be able to advise you further. In general: • an occupational therapist advises on the activities of daily living. eating. hospital doctor. a physiotherapist deals with equipment that an occupational therapist would deal with in another area. your GP or hospital doctor should be able to tell you what is available. dressing. whether you are receiving benefits) and the funding that is available in your local area or from other sources.g. although they often work together as part of a team.

In Good Repair. which provides information on repairs. adaptations. illness or disability. Social services must assess anyone who appears to fit these categories in order to determine what services should be provided to them. Before going ahead with any work like this. operating in England. funding and finding a reliable builder or tradesman. 62 .What adaptations will I need to make to my home? Some people find that they need to make repairs or adaptations to their home to make living with Parkinson’s easier. an organisation. They can assess the difficulties you are having and make recommendations accordingly. Another source of information and advice is Care & Repair. It produces a useful guide. Scotland and Wales that promotes and develops housing policies and initiatives to enable older and disabled people to live in their own homes independently. because of their age. you should seek professional advice from an occupational therapist. This might include improving access in and out of the front door by providing a ramp. What help can I obtain from social services to help me manage at home? Your local social services department (Social Work Department in Scotland and Department of Health and Social Services in Northern Ireland) is responsible for arranging support services for people who require help to live independently in the community. or fitting a stair lift. refitting a bathroom to make it easier to manage.

These may be provided by social services directly or by private agencies and voluntary organisations. This is usually means-tested based and depends on a financial assessment. social services may assume that you can pay the full cost of the services. The assessments generally take place in the person’s own home and should take into account any personal preferences and requirements that they have.They do this through what is known as a ‘needs’ or ‘care’ assessment. Although the assessment will be free. as well as their social and cultural background. Procedures for assessing and providing services vary and depend on the particular local authority. The assessment may also identify healthcare requirements that are the responsibility of the local health authority rather than social services. including therapists.g. usually carried out by a member of the social services team. a district nurse visiting regularly to administer an injection. 63 . If you do not provide this information. nurses and the GP. who pays for any services subsequently recommended depends on your financial situation and the eligibility criteria for service provision in your area. Where such needs are identified. the assessor will inform your GP or another member of your primary care team. In complex cases. several different health professionals may become involved in the assessment. which is often completed by the care manager or social worker at the same time as the needs or carer’s assessment. e. The assessment enables social services to identify what the person’s particular needs are and what services might help them. such as a care manager or social worker.

provided that you meet its eligibility criteria and should also be able to advise on other sources of financial help. there are two areas where safety issues are important for people with Parkinson’s: • Preventing falls or other injuries and managing day-to-day activities safely – in and out of the home • Reducing your vulnerability. Generally speaking. How can I ensure my safety? Recommendations for safer surroundings and habits have to be balanced against your individual lifestyle choices and the amount of risk you want to accommodate in your life. especially to bogus callers and unscrupulous sales people A physiotherapist can advise further on falls prevention and management. This might include: • using non-slip mats in the bath or shower • rearranging furniture to make moving around your house safer • checking that electrical leads don’t cross walkways • fixing loose carpets and floorboards • installing grab rails alongside stairways and in places that you find particularly difficult to negotiate • using equipment or disability aids to make particular activities easier and safer 64 .The local authority may be able to offer you financial support if you need it. and an occupational therapist can provide advice on safety in and out of the home.

If you live alone or spend much of your day on your own. A fee is charged for most of these systems. as well as by voluntary organisations such as Age Concern and Help the Aged. These are run by many local authorities. you can push a button on the telephone or a device worn around the wrist or neck to summon help from a 24-hour response centre. • Your local social services department should be able to advise you on community alarm schemes in your local area. 65 . In the event of an accident. and are not just available to older people. but there are usually exemptions for some people on low incomes. Want to know more? • See the PDS information sheets Equipment and Disability Aids (code FS59) and Falls and Parkinson’s (code FS39). you may find it helpful to register with a community alarm system.

66 .Diet and exercise What advice do you have on diet? Maintaining a healthy diet is important for everyone with Parkinson’s. no specific diet is required. you should discuss them with your doctor or PDNS. Parkinson’s can sometimes cause problems related to diet or the practical aspects of eating and drinking. These include: • a small number of people taking levodopa may find that a large protein meal slows the effectiveness of the medication • constipation • swallowing problems. particularly if the person is immobile or does not exercise • mobility problems that affect a person’s ability to cook or use eating utensils If you are experiencing any of these difficulties. vegetables and fruit. as well as ways of preparing and presenting them to make meal times as trouble free as possible. which can lead to weight loss and malnourishment • weight gain. However. other than to eat a well-balanced diet with plenty of fibre. An occupational therapist can advise on methods and equipment to make eating and drinking easier. In general. A dietitian can suggest types of food and drink.

this should be discussed first with your doctor or a dietitian. How is constipation managed in Parkinson’s? Constipation is a common problem and has several causes: • The mobility symptoms of Parkinson’s.Want to know more? • See the PDS booklet Parkinson’s and Diet (code B065) and the information sheet Eating. may be worth considering if you are experiencing major difficulties. A protein redistribution diet. These individuals may benefit from taking their levodopa 45 minutes before meals (ideally with carbohydrate food like a cracker or biscuit). fish. However. beans and pulses) seems to interfere with the effectiveness of their levodopa medication. Want to know more? • See the PDS booklets The Drug Treatment of Parkinson’s Disease (code B013) and Parkinson’s and Diet (code B065). such as rigidity and slowness of movement preventing the bowel from getting the stimuli to function properly 67 . eggs. yoghurt. Do not reduce the amount of protein you eat – it is vital for the body to renew itself and fight infection. and reduction can bring dangerous weight loss. whereby most of the daily recommended dietary protein is taken in the evening. nuts. Swallowing and Saliva Control (code FS22). How can I manage problems with protein and medication? Some people find that protein (which is found mainly in meat. cheese.

who may refer you to a dietitian for further advice. you should discuss these with your doctor or PDNS.• Lack of fibre in the diet because of the problems that some people have with chewing and swallowing food • Some anti-Parkinson’s medications If you are experiencing any problems with your bowel or bladder. Want to know more? • See the PDS information sheet Eating. improving breathing techniques or strengthening facial and tongue muscles. If you are experiencing problems. Techniques they might suggest include modifying your posture. How are swallowing problems treated? Some people experience swallowing difficulties. Swallowing and Saliva Control (code FS22). usually when they have had Parkinson’s for several years. 68 . discuss these with your doctor or PDNS. Don’t use laxatives without medical advice. Self-help might include increasing your intake of fluids and fibre-rich foods (NB: too much bulk from fibre can increase constipation) and more exercise. who may refer you to a speech and language therapist. Want to know more? • See the PDS information sheet Constipation and Parkinson’s (code FS80) and booklet Looking After Your Bowel and Bladder (code B060).

Taken in small amounts. A healthy. as some can cause severe side effects when taken in large doses and/or may be contraindicated with the medication you are taking. It may be worth discussing this further with your GP or PDNS. including antioxidants. minerals or antioxidants will help Parkinson’s symptoms or stop its progression. Some vitamins. there’s no reason why you can’t continue to do so. if you have just started a new drug regimen. If you are concerned. alcohol shouldn’t interfere with your medication.Can I drink alcohol? If you’ve always enjoyed a drink. but do avoid drinking excessive amounts. extra caution should be taken and you should minimise alcohol intake until your body has adjusted to the change in medication. • See the PDS information sheets Antioxidants and Parkinson’s (code FS67) and Coenzyme Q10 (code FS74). Don’t try any supplements or herbal medicines before doing this. if you have one Can vitamin supplements help Parkinson’s? There is no clear evidence that taking extra vitamins. However. you should discuss this further with your doctor or PDNS. have been or are the subjects of Parkinson’s research but the results to date have been inconclusive. 69 . Want to know more? • See the PDS booklets Parkinson’s and Diet (code B065) and Complementary Therapies and Parkinson’s (code B102). well-balanced diet should provide all that you need.

so you need to exercise and keep moving regularly. so the person with Parkinson’s doesn’t feel like doing much.What exercise should I do? Whatever your age. preserving your balance and stopping you falling. Check with your GP first if you are worried. when you are less tired or when you have company. you are most likely to stick to it. 70 . • Where possible. As difficulty in moving is a major symptom of Parkinson’s. keeping you flexible. The extra effort needed can add to a feeling of tiredness. but choosing any will benefit you physically and mentally. your body works on a ‘use it or lose it’ basis. • Make it more sociable by joining a group. Tips to keep you motivated and on track to maintain your fitness level • Look for an activity you enjoy – if something is fun. • Try to find something local so you are not hampered by travel. you should try to prevent this happening for as long as possible. This in turn will restrict the range of movement in their joints. which can lead to a vicious cycle and a loss of mobility. For people with Parkinson’s. A combination of all these is best. this is especially important as muscle tone alters and becomes stiff. Different types of activities can help to keep your body physically fit by: strengthening muscles and bones. • Age and illness are no barriers to improvement. keeping your heart strong and helping you to relax. find a time of day that suits you best – e. and whether you have Parkinson’s or not. which in time may lead to injury and pain.g.

Many people with Parkinson’s are involved in active sports and activities such as racquet sports. lack of energy and a feeling of exhaustion. bowling. sailing. I find Parkinson’s makes me feel very tired. such as yoga. If you are having problems with particular exercises or sports. walking. put together by two physiotherapists. golf and daily stretches. Can I still play sports? Yes. Pilates. tai chi. gardening. Participating in any of these activities can also offer social opportunities and help alleviate the depression that many people feel. that can be done at home. There are also many sporting associations that can provide help and advice to people who have disabilities. intellectual or emotional activities. which may affect physical. Why is this? Many people with Parkinson’s experience an overwhelming sense of tiredness. It can be the first 71 . Want to know more? • The PDS booklet and DVD Keeping Moving (code V011) provides a set of exercises.• Don’t become frustrated if there are days when you don’t do as well as normal – we all have off days – so persevere and you will notice a change for the better. There are also a number of ‘low-key’ exercise options to keep you flexible and active. a physiotherapist can advise you further. skiing. swimming and dancing.

Tiredness can make people less active. • Energy may fluctuate throughout the day as a result of the timing and dosage of medication. • For people with Parkinson’s. • There may be co-existing conditions such as anaemia and blood pressure problems. • Many people find it difficult to concentrate for long periods of time without a break. 72 . which in turn affects their physical and emotional wellbeing and sometimes leads to depression. The muscles can become fatigued very quickly and easily as a result. activities that were previously automatic now require conscious effort. boredom and isolation. which have to work harder and often against each other in order to initiate movement or undertake a task. • Depression. • Symptoms such as tremor and rigidity can put considerable stress on the muscles. • Sleep and night-time problems. but is not specific to any stage of the condition.symptom for some people. you may feel more energetic and able to handle certain tasks at specific times of the day. You may find that after feeling quite fit and able one day. As a consequence. Causes may include the following: • The day-to-day variability is characteristic of Parkinson’s. you feel too tired to do much the following day. • Stress can make the symptoms worse and increase feelings of fatigue.

Adjustments to medication or the use of drugs that have a stimulant effect can sometimes help. An occupational therapist can advise on ways of making the activities of daily living easier. Want to know more? • See the PDS information sheets Fatigue and Parkinson’s (code FS72). Planning in advance is also a good idea – for instance. which in turn may lessen your fatigue. 73 . as is taking regular rests and asking for help when you need it even if you want to remain as independent as possible. Sleep and Night-time Problems in Parkinson’s (code FS30) and Depression and Parkinson’s (code FS56). Achieving a balance between rest and activity will help you to overcome fatigue. Any depression and sleep disorders also need to be treated. A physiotherapist can help you manage any mobility problems that are contributing to your tiredness. make sure the next day is quieter so you can recover. if you know that you are going to be very busy one day. Self-help strategies may include developing good sleeping habits. improving your diet and making sure you exercise regularly. important step. Pacing yourself is a key ingredient in this. Don’t try to do too many activities at one time. Be aware of your capabilities and know your limitations.Identifying the source of your fatigue is the first. so discuss this further with your doctor.

I play golf twice a week. I am fortunate enough. shop. who was diagnosed with Parkinson’s in 1994 at the age of 43 I will never forget the day when I was diagnosed with Parkinson’s. cook. I did not feel annoyed or bitter. garden and virtually lead a normal life. The one thing I did know was that I was not going to give up without a fight. many years later. My theory is that it allows my brain to rest and regenerate itself. and had a good job that I enjoyed and a happy family life.My life with Parkinson’s by Sue Lily. Remember. I was 43 at the time. I always try to rest for 30 minutes in the afternoon as I find this really gives me a boost. 74 . To start with. to still be quite active. which gives all members great support. I never consider that I cannot do something. We have met some wonderful people and made some great friends. clean. I fit my most energetic activities in during the morning and do other quieter pursuits later in the day. but never surrender to it. I believe that the most important thing is to keep active. My one great lifesaver has always been our local PDS branch. I look on my Parkinson’s as a great challenge and try to outwit it in every way. just shocked by what was ahead of me. but work my activities around my Parkinson’s. accommodate Parkinson’s. Everyone works hard fundraising and organising events to make the members lives more enjoyable. I find when I don’t play golf or have any physical activity I feel far worse. I don’t think the true impact of all the implications of Parkinson’s sunk in.

two-or threeyear renewable licence. if supported by their doctor. we recommend that you discuss driving with your GP or consultant before approaching the relevant authority.Travel and leisure Will I be able to continue to drive? Having Parkinson’s does not necessarily mean your driving licence will be affected. although you may be required to have a medical or take a driving test. some people find that their medication makes them drowsy and. if positive. therefore. unable to drive. they may contact your doctor to confirm your fitness to drive and. you may be issued with a one-. Once you have been given a diagnosis of Parkinson’s. Once informed. 75 . Many people with Parkinson’s continue to drive for years after diagnosis. However. you have a legal obligation to inform: • UK – Driver and Vehicle Licensing Agency (DVLA) • Isle of Man – Department of Transport • Guernsey – Driver and Vehicle Licensing • Jersey – the parish that issued the licence However.

including: • parking – including the Blue Badge scheme • driving issues • Motability (a charity that helps people with disabilities use their higher rate mobility component of disability living allowance (DLA) or war pensioners’ mobility supplement to buy or hire a car. Any person who knowingly drives while unfit may invalidate their insurance cover. Where can I get advice on transport and travel matters? The PDS rights and benefits information sheet Help with Getting Around (code WB10) provides comprehensive information on various transport and travel issues.All drivers have a responsibility to ensure that they are medically fit to drive at all times. See Useful contacts for further details. It is therefore essential to inform your insurance company that you have Parkinson’s and of any other changes in your health that may affect your ability to drive. It is an offence under the Road Traffic Act 1999 to make a false statement or withhold information for the purposes of obtaining a certificate of motor insurance. Want to know more? • See the PDS booklet Driving and Parkinson’s (code B064). • the National Key Scheme for disabled toilets • public transport – disabled access and concessionary fare schemes • wheelchairs • sources of further advice 76 .

The Royal Association for Disability and Rehabilitation (RADAR) produces a guide to non-local travel. • Tourism for All – a voluntary organisation that helps disabled and older people by enhancing their ability to travel and holiday in the UK and abroad. children and their carers at five accessible centres in the UK. rail. sea. Where can I get advice on holidays that are suitable for someone with Parkinson’s? Holidays are important for most people.g. although more planning may be required. Sources of further information and advice include the following: • RADAR publishes A Guide for Disabled People – Holidays in Britain and Ireland. available from the PDS at a cost of £10 including postage. and members may be able to recommend places where they have stayed or give you tips. • Vitalise – a voluntary organisation that provides breaks for disabled adults. It also publish guides to other UK and European breaks. 77 . which focuses particularly on links between different methods of travel – e. road. enjoy leisure pursuits and see new places. Having Parkinson’s shouldn’t change this. • PDS branches – some run their own holidays. and air. allowing us to take time out to recharge our batteries. There and Back.

In the early 1980s. tremor. such as ecstasy. As a result. Research into this possibility is continuing. The programme examined the role that serotonin may play in the development of Parkinson’s and whether benign components of ecstasy could be isolated to develop new treatments for Parkinson’s. with its many powerful psychological effects. confusion and depression) from many medications. a young man with Parkinson’s. the drug is known to affect the chemical messenger (neurotransmitter) serotonin. would be especially dangerous. many people ask whether cannabis may also be helpful for Parkinson’s. unrealistic thought processes and impaired concentration. the symptoms of his Parkinson’s disappeared. but some illegal drugs are known to cause drug-induced parkinsonism. confusion. Research by scientists in Manchester found 78 . have acute undesirable effects. Although ecstasy could never be used as a treatment for any illness because of its harmful side effects.What effects do illegal drugs have on Parkinson’s? Information is limited. People with Parkinson’s can have a greater risk of psychological side effects (such as hallucinations. some drug addicts in the USA took a synthetic heroin derivative known as MPTP and developed drug-induced parkinsonism. In recent years there have also been reports that cannabis helps people with multiple sclerosis. In February 2001. Drugs such as ecstasy. Many illegal drugs. who found that when he occasionally took ecstasy. including euphoria. This programme examined the experiences of Tim Lawrence. the BBC Horizon documentary ‘Ecstasy and Agony’ was broadcast in the UK. another neurological condition.

that a cannabis-like drug could be useful in some people for reducing some forms of levodopa-induced dyskinesias (involuntary movements). like ecstasy. including visa requirements. The following tips could help ensure as trouble-free a trip as possible: • Obtain comprehensive information about the country you are visiting. there are likely to be mood-altering effects in many people that they would not find conducive to leading a normal life. Any potential problems can usually be overcome with careful planning in advance. This 79 . Advice is also available from several sources. Do you have any tips for travelling abroad when you have Parkinson’s? Many people with Parkinson’s travel overseas on holiday or for business. Cannabis. • Check the health service arrangements for the country you are visiting and whether there is a reciprocal NHS agreement. and research is continuing. Want to know more? • See the PDS information sheet Ecstasy and Parkinson’s (code FS47). There is no reason why the condition should stop you travelling. It doesn’t work for everyone and while it can be useful for motor symptoms. shows a way forward for the development of more useful drugs. local customs and regulations regarding taking particular types of medication into the country (some require import licences). the drug itself is unlikely to be widely used as a medical treatment. However.

• Plan your journey well and get help from tour operators. It is also helpful to learn how to say. “I have Parkinson’s disease” in the local language in case you experience difficulties. people with Parkinson’s have reported that some operate quotas on the numbers of disabled people a single aeroplane may carry. • If you are flying. • Take a letter from your doctor stating that you have Parkinson’s and detailing the medication you are taking. However.uk. They may be able to advise you on services to help disabled people in their country.gov.can be checked on the travel advice section of the Department of Health’s website – www. 80 . • Take the contact details of any local Parkinson’s organisation with you and consider contacting them. Keep it in your hand luggage and take extra with you just in case. • Carry your medication in a correctly labelled container as issued by the pharmacist. especially to cover any medical treatment you may need. check what arrangements are required if you need to use syringes or other sharp objects to take your medication en route. provided that they know in advance that you have Parkinson’s and require assistance. as well as any other appropriate information about your medical care. It may not be available in the country you are visiting. • Ask your doctor for advice on how to take your medication to account for any change of time zones. airlines and travel companies. Most of them are willing to help. Ensure that you take all the necessary forms with you.dh. It’s best to check in advance! • Make sure that you have adequate insurance for your visit.

An occupational therapist can advise further on creative activities – either as a new activity or to overcome problems that you are experiencing with existing interests. 81 . poetry and photography. which includes a scan of her brain.Want to know more? • See the PDS information sheet International Travel and Parkinson’s (code FS28). from which the tips above have been taken. • The book Six Days. fulfilment. These provide pleasure. social interaction. What creative activities can I do? Many people with Parkinson’s enjoy creative activities – including writing. writer and poet who had Parkinson’s – to recognise the creative efforts and talents of people with Parkinson’s in art. music and art. who has had Parkinson’s for many years and recently produced a large ‘Creation’ window for Chester Cathedral. This also contains a list of organisations and resources that can provide you with further advice. when done in groups. We run the Mervyn Peake Awards – an annual competition developed in memory of the famous illustrator. by Painton Cowan. Want to know more? • The PDS booklet Complementary Therapies and Parkinson’s (code B102) includes information on creative therapies. discusses the work of stained glass artist Rosalind Grimshaw. an outlet for emotional expression and. The PDS has worked hard to promote creativity in people with Parkinson’s.

82 . The most beneficial type seems to be music with a regular beat and a tune that is familiar or that has some emotional significance. which run musicbased courses. preliminary studies suggest that the effects can also continue afterwards. tremor and speech problems. it might help with physical activities. involuntary movements. such as Drake Music Project and Excel 2000. and that they tire less easily when moving to music. The benefits are most obvious during the therapy sessions. such as walking and upper limb movements. For people with Parkinson’s. Some find that listening to strong rhythmic music or a metronome can sometimes improve their walking and help them overcome freezing episodes. Others find that they are still able to dance. even if walking is difficult. However. Want to know more? • The PDS booklet Complementary Therapies and Parkinson’s (code B102) has more information on music therapy and organisations. Music therapy is the use of music by trained professionals as a treatment for certain physical and mental illnesses. Music therapists often work with these problems with other therapists. • Your local PDS branch may run exercise groups to music or be able to advise you further on local activities. The music can be used to improve mobility and speech and to enable people to relax or to express feelings and ideas. including physiotherapists and speech and language therapists. A musical background is not needed to enjoy music therapy.Could music therapy help me? Music seems to play an important part in the lives of many people with Parkinson’s.

How would creative writing help me? Writing can help you discover and explore your thoughts and is also an opportunity to be creative. fresh air. creativity and an interest that you can share with many others. Some people find using a computer easier than writing by hand. The form the writing takes might include sharing your experiences with others in letters. I love gardening but am beginning to find some aspects difficult to manage. You don’t have to share it with anyone unless you want to. stories or songs. There are also two voluntary organisations that provide information and support to gardeners with disabilities: Thrive and the Gardening for the Disabled Trust. How you write and what you write is up to you. where people can share what they have written. The PDS online forum has a creative corner. 83 . Want to know more? • See the PDS information sheet Writing and Publishing (code FS76). or creating poems. emails or internet blogs. but many people obtain inspiration from joining a writing group or taking a writing course. An occupational therapist can advise you on techniques and equipment that will make the particular problems you are experiencing easier to manage. What help is available? There are many benefits of gardening – exercise.

Who can help? Some people find having a pet a great comfort. Pets have even been shown to relieve stress and lower blood pressure. Remember. but I worry about what would happen to it if I went into hospital or could no longer live at home. • Buy plug plants rather than seeds if you find the fine finger movements needed too difficult to manage. The Cinnamon Trust is an organisation that aims to help people over 60 years or terminally ill people stay together with their pets for as long as possible. • Gardening is a very popular pastime that brings people together. If you find something impossible. friends. making them feel less isolated. With the help of over 4. PDS branch or local garden club members.Some general tips • Take advantage of the many tools and pieces of equipment available that have been specifically designed to help gardeners who have disabilities. neighbours. 84 . though. It is natural to be concerned about what would happen to your pet if you had to go into hospital or move to sheltered housing or a care home. • Raised flower beds can help people who have trouble bending. or community volunteers may be more than happy to help you. • Paths can be widened to give you more room to manoeuvre.500 volunteers. that some can get underfoot and all pets involve a commitment. I get a lot of comfort from my pet.

the services they offer include dog walking for people with limited mobility and pet fostering. but the following animal welfare organisations may be able to advise further or have local schemes that can offer help: • The National Animal Welfare Trust (has an emergency pet care scheme for members) • The RSPCA • Cats Protection • The Blue Cross • The Pet Fostering Service Scotland (provides an emergency care service for anyone of any age living in Scotland who has to go into hospital or respite care and is temporarily unable to look after their pet) There may also be an animal lover in the local branch or YPN group who might be willing to help. 85 . The Trust is unfortunately not in a position to help those under 60 years. Want to know more? • Help the Aged has a useful information sheet on pets.

He read it aloud and passed it to his colleague. They like to be called ‘sir’. even your shoes have to be scanned. Even before I was diagnosed. “I have a medical condition. y’hear. who was diagnosed with Parkinson’s in 2007 at the age of 49 I hate flying. Just as I opened my mouth to say so.” I said producing my Parkinson’s Alert Card. There was much whispering before one looked at my flapping arm and asked me ‘Are you taking drugs?’ The queue behind me suddenly hushed. After all. these people carry guns! After a seven-hour flight to Washington.My life with Parkinson’s by Jon Stamford. selfpreservation took over. “No sir. He called his supervisor. especially if the movie is good. You have a nice day. I seemed to have a way of looking guilty. Don’t get me wrong – I have nothing against flying itself. Well. it’s worse. Now that I stumble and shake. They stared unblinking at me for an age it seemed. US Arrivals is the worst of all. I thought. I stood shaking while trying my best nonchalant look as the officer scrutinised my passport – and me. His colleague read it aloud. On many flights. I have learnt not to wear tight lace-up shoes after taking a fumbling eternity to remove my shoes in front of a queue of grumbling Benidorm-bound tourists. No. my medication is certainly a drug so the answer would technically be yes.” 86 .” “Do you have documentation of that?” “Yes sir. I love take off and landing and quite like the bit in between. it’s all the departure and arrivals stuff I dislike. The silence was broken by a loud thump as he stamped my passport and smiled.” I said. “Welcome to the US.

Where can I get advice? Many people with Parkinson’s and their families worry about money. So try to obtain as much information and advice on the options or support that may be available to you – now and at a later date.Work and money I am worried about my financial future. Even if you don’t feel you need any assistance at the moment. If you are older. planning for the future is crucial. 87 . you may have paid off your mortgage and no longer be working. raising your family and saving for a pension. but may be worried about how you are going to cope on your pension. If you are a younger person. the stage you are at in your life and how Parkinson’s affects you. Financial assistance may be available through welfare benefits or other sources if you meet specific criteria. However. There is no doubt that disability or illness can impact significantly on finances. this is a complicated area on which you need expert advice. The concerns you are likely to have and the help available will depend on your specific circumstances and resources. your main concerns may be earning a living. paying the mortgage.

including help with filling in forms. Talk to your bank about the problems you have – they should be able to offer alternative arrangements. The recently introduced Chip and PIN technology that has reduced the number of cheques that most people write may help you. To find out more. • PDS Information and Support Workers can provide one-to-one benefits advice. An occupational therapist can advise on ways of improving your handwriting. • Organisations that can provide you with expert advice include the Department for Work and Pensions. This might include using a rubber signature stamp. Citizens Advice. The difficulty may be writing the signature at all and/ or writing it with any consistency. if you live in a UK country where this is acceptable.Want to know more? • The PDS has a range of rights and benefits information sheets. but some people find they have trouble entering their PIN number because of unsteady hands and lack of co-ordination. What can I do? Writing signatures on cheques and other official documents is a very common problem. contact the PDS Helpline. which can lead to signatures being queried in shops or by the bank. available via the Helpline and by email. has a dedicated Benefits and Employment Adviser who can answer questions and provide advice on this subject. Age Concern and local authority welfare rights offices I have handwriting problems and am having problems making my signature consistent on cheques etc. 88 . • The PDS advisory service. or a card with a photo on it.

such as reducing the hours you work. an occupational therapist can carry out an assessment and advise on practical solutions. Sometimes changes need to be made to make work easier.Want to know more? • See the PDS information sheet Handwriting and Parkinson’s (code FS23). 89 . it is vitally important to establish satisfactory treatments with your specialist. may need to consider alternatives. some jobs are more compatible with Parkinson’s than others. Before making any decisions you should do the following: • Gather as much information and expert advice as you can about your particular circumstances. Will I be able to keep working? This is a common concern. some people continue to work for many years. for example. so people who are in jobs requiring high levels of physical stamina and fast reactions. or having Parkinson’s may prompt you to take a different approach to work. Although many people with Parkinson’s do carry on working after their diagnosis. changing career or taking early retirement. how easy this is to do depends on the type of job you have and how the condition affects you. fulfilment. If you need or wish to remain in work. If the work situation creates practical problems. however. personal satisfaction and social interaction. Work is an important part of many people’s lives – it can provide a sense of purpose. Inevitably. including continuing employment and the options available to you. With careful management. • Discuss your situation with your current employer and see what support is available from them – many people with Parkinson’s have found their employer to be sympathetic and keen to help.

transferring you to another post or another place of work. allocating some of your work to someone else.• Obtain advice from the Disability Services Team at your local Jobcentre Plus office. The Act requires the employer to make a ‘reasonable adjustment’ to the person’s employment or working environment. staff association or professional body. including employment. It is unlawful for an employer.gov. being flexible about your hours – allowing you to have different core working hours and to be away from the office for rehabilitation. Your local Jobcentre should be listed in the phone directory or on the Jobcentre Plus website www. using a reader or interpreter. They can also advise your employer. which has substantial and long-term effects on a person’s ability to carry out normal day-to-day activities’. they should be able to provide you with support and advice. Examples given are: making adjustments to the premises. assessment or treatment. making instructions and manuals more accessible. using modified equipment. of any size. They cover discrimination against people who have a disability or have had a disability in the past – defined as ‘a physical or mental impairment. What can my employer do to help me? The Disability Discrimination Acts 1995 and 2005 protect you from discrimination. being supervised. If your 90 . Financial assistance through the Access to Work scheme may also be available to help you meet the costs of travel to work and to purchase equipment that you need to stay in work. This might include any adaptations or retraining that is available. retrain or obtain employment.jobcentreplus. to discriminate against disabled people in several areas.uk • If you belong to a trade union. providing training.

adjustments should begin at the recruitment stage. You do not have to pay for any part of a reasonable adjustment. Your employer can get support from the Government Access to Work scheme. practical and financial considerations involved first. it is worth talking to employers and professional or trade organisations to establish the most favourable terms and timing. Some firms encourage their employees to attend courses on preparing for retirement and some local further education colleges also run pre-retirement courses. staff association or professional body. carefully consider the emotional. • Contact the Department for Work and Pensions or the Equality and Human Rights Commission for more information. Even when people are happy with their decision to retire early. 91 . • Seek advice from your trade union. What advice is available to help me with this process? If you decide to stop working. Want to know more? • The organisations and services listed above should be able to advise further. operated by your local Jobcentre Plus. Don’t rush into a decision – give the treatment time to settle down. I have decided to stop working. Want to know more? • See the PDS’s Employment Guide (code B103).prospective employer is made aware of your disability.

a smile and a smirk help me. I know. I now realise that your family and your friends keep you positive. and laughing at Parkinson’s is the best medicine. I also receive Incapacity Benefit and Disability Living Allowance. which gives me a monthly income until I am 60. being silly. I took out a critical illness policy. I would see the sea in all its different moods every day. look after you and make you forget that you have Parkinson’s. At the moment I’m designing a website for a tiny book publisher. When I taught In Porthcawl. taking photographs and designing websites. That’s how my life is now: on the ebb.My life with Parkinson’s by Alun Morgan. I stopped working in 2001. I am lucky because I have my teacher’s pension. colourful. get round the classroom. 92 . The only positive statement I can make about my Parkinson’s and school is I was unable to write school reports (joy of joys!). calm. When I worked (as Head of Information and Communication Technology) with Parkinson’s. yet make time for my monkey puzzle trees. which is half of my final salary. inviting and relentless. part of which pays for my mobility car. and write neatly. who was diagnosed with Parkinson’s in 1999 at the age of 49 I was a teacher for 27 years. but a joke. Talking to people living with Parkinson’s helps you put it into perspective. I am now heavily involved with the PDS. I found it increasingly difficult to control my mouse. A year before diagnosis. crying doesn’t get you anywhere. the last two with the knowledge that I had Parkinson’s disease. stormy.

If the answer you seek is not contained in 93 . especially when you are newly diagnosed. This may include resources on: • the nature of Parkinson’s. The PDS is an obvious place to start. Having too much information all at once. its treatment and management • the services available to help you • self-help strategies • useful organisations • family support • research • personal stories from other people with the condition The kind of information you want or need will depend on your particular needs. We have a wealth of information materials – booklets. audiovisual materials and more – on many aspects of Parkinson’s and associated subjects.Self-help How do I find information to help me? Finding the right information to meet your specific needs is a vital ingredient in coping successfully with Parkinson’s. information sheets. which will probably change over time. can sometimes be overwhelming – but knowing where to get reliable information when you want it is very important.

which are listed in the ‘Resources’ section at the end of this booklet.uk 94 . including your PDS Information and Support Worker.co. If your query is about local facilities.nhsdirect.uk • Northern Ireland www. our regional services. you can contact our Helpline staff.healthandcareni.uk • Scotland www. The National Health Service (NHS) has 24-hour. local branches and YPN groups.nhs.nhsdirect. who will be happy to talk to you about your specific queries and concerns.uk • Wales www.n-i.these.nhs.uk/ For more information on how the NHS works: • England www. They will also signpost you to any appropriate organisations or resources.uk • Northern Ireland www.nhs. NHS24 on 08454 242424.nhs24. websites and useful organisations that other people with Parkinson’s have found helpful.co.nhs. In England and Wales this is NHS Direct on 0845 4647. nurse-led telephone information services on health services and conditions. should be able to advise you further.wales. and in Scotland. There are also many books. The following websites also provide information on health conditions and the services available in the different UK countries: • England www.

gov.nhs. Contact your local social services department for information about the help that is available from them in your local area.gov.show. pharmacists and dentists.uk • Wales www.nhs.scot. GP surgery or hospital should be able to provide you with contact details for your local PALS. which aim to: • provide help and information on local healthcare services and support agencies • offer practical advice to help resolve difficulties that people have when using any NHS services or if they don’t know how to access them • give users a say in their own care and how their local services operate • advise about the NHS complaints system.wales. including local Independent Complaint Advocacy Services (ICAS). such as GPs.gg/ccm/navigation/health---social-services/ • Jersey www.je/HealthWell Primary care services. which can support people making a formal complaint Your local primary care trust. are managed by primary care trusts.gov. The telephone number should be in your local directory or available from your GP surgery. 95 . These all have Patient Advice and Liaison Services (PALS).• Scotland www. PALS or Citizens Advice Bureau.uk • Isle of Man www.im/dhss/health/ • Guernsey www.

claims – especially about complementary therapies. As wonderful as it is to have so much information at your fingertips. and contact details? Does it subscribe to any codes of practice such as HON (www.uk)? • How current is the information? Is there a date provided so you can ensure that the information is up to date? • What sort of language is used? Is the information balanced and unbiased or is it sensational and emotional? • What is the purpose of the information? Is it aimed at simply providing you with information or does the purpose seem to be to encourage you to buy a product or 96 .ch) or DISCERN (www. How do you determine what is reliable information and what needs to be taken with large pinches of salt? It would help to consider the following: • Who produced the information and why? Does the website clearly state: its aims and objectives.discern. there are many others that contain questionable material or make dubious.How do I work out what is accurate? Health and science articles are extremely popular media items that are readily available in the newspapers and on TV.org. but persuasive. Although excellent resources exist. who produces the information.hon. charity number (where appropriate). radio and the Internet. with details of their expertise and qualifications. this availability has created a new problem.

Personal (sometimes called anecdotal) experience can be very valuable. double-blinded randomised controlled trials are the gold standard. They should also be published in peer-reviewed journals (i. check with your doctor that there are no contraindications between this and any treatments that you are already receiving. where the quality of the research has been assessed before publication). • Check anything you are concerned about with your doctor If you want to try a complementary therapy. • Is the information from the UK or abroad? Information from other countries can be very interesting. does it seem biased in favour of their merchandise? • What evidence is it based on and does it clearly state this? For scientific research. but may not be relevant to the UK.co. Remember that medical conditions often affect people differently. especially in providing opportunities for exchanging ideas and providing mutual support.e. 97 . so your experience may be very different from someone else’s. It is important that websites make it clear when information is based solely on this. • The BMA’s Best Treatments website aims to provide evidencebased information to lay people – see www.uk (subscription charge applies). a fact sheet published by the British Medical Association (BMA). Want to know more? • See Health Information: Finding Reliable Sources on the Internet. Drug names and other details may also differ. but should not be used by itself as ‘proof’ that a product works.besttreatments.service? Is the website sponsored by particular commercial organisations? If so.

By receiving money in lieu of social care services.• See I don’t know what to believe … making sense of science stories produced by Sense About Science. It focuses on debunking scientific inaccuracy. written by Ben Goldacre.org • ‘Bad Science’ is an entertaining weekly column. Payments could go towards respite care or caring support.net • Patient UK. 98 .badscience. a doctor working in the NHS.co.senseaboutscience. and are able to make their own decisions about how their care is delivered. maintaining a healthy lifestyle and contact details for many voluntary organisations.uk Is there a way in which I can take more control of the care I receive? Direct payments are cash payments made by local authorities to people who have been assessed as having a need for community services. an independent charitable trust promoting good science and evidence in public debates. hospitals and pharmacies. for example. It also enables people to find and compare services in their area. published in the Guardian newspaper. NHS Choices is a website that provides information about medical conditions and signposts to further support. The amount of the direct payment will depend on the assessed person’s means. provides a wealth of information on health conditions.patient. quackery and pseudoscience. See www. people have greater choice and control over their lives. including GP surgeries. See www. See www. an evidence-based website.

Want to know more? • Contact your local council social services department for more information about direct payments.uk to find out more about NHS Choices. The benefits include: • feeling confident and in control of your life • aiming to manage your condition and its treatment in partnership with healthcare professionals • communicating effectively with professionals and being willing to share responsibility on treatment 99 . leading to an improved quality of life”. which shows that people living with chronic illnesses are often in the best position to know what they need to manage the condition they have. What is the Expert Patients Programme? The Expert Patients Programme (EPP) is an NHS-based training initiative that recognises the importance of patient empowerment. who are able to take more control over their health by understanding and managing their conditions. The definition of an ‘expert patient’ is “people living with a longterm health condition. this can make a considerable impact on the management of their condition and their quality of life.nhs. • Visit www. The programme is based on research from the UK and the USA over the past 20 years. If they are given the necessary self-management skills. it aims to help people to develop new skills to enable them to manage their condition on a daily basis. Set up in April 2002 for people who live with long-term chronic conditions.

• being realistic about the impact of your condition on yourself and your family • using the skills and knowledge you have to lead a full life To become an ‘expert patient’. often based on ancient systems. reflexology. Although there is limited research information available about the benefits. relaxation. the Alexander technique. anecdotally many people report that they help them with postural control. What are complementary therapies and how can they help? Complementary therapies are non-conventional health treatments.expertpatients. fitness. such as Parkinson’s. homeopathy. Pilates. herbal medicine. Want to know more? • See the EPP website at www. creative therapies (involving art. chiropractic. social interaction and personal development. which may be used in addition to conventional medicine. dance or drama). osteopathy. conductive education. as stress can make the symptoms of Parkinson’s worse. music. Complementary therapies are particularly popular among people who have long-term conditions. Ayurveda. Examples include acupuncture. aromatherapy. which is led by someone who lives with a long-term condition themselves.uk or telephone 020 7922 7860. Relaxation therapies have been found to be particularly helpful. 100 .nhs. tai chi and yoga. you take a six-week course (two and a half hours a week).

self-help strategies are as important as the support you receive from medical treatments and health and social care disciplines. discuss this further with your doctor to ensure that the therapy is suitable for you. Some of the strategies that have worked for other people with Parkinson’s include the following: • Maintain a positive attitude and managing stress. Remember. If you are thinking of trying complementary therapy. This is particularly important if you want to use herbal medicines. What self-help strategies will help me cope with Parkinson’s? When you are living with a long-term condition such as Parkinson’s. • Think about what can be done rather than what cannot. particularly at diagnosis stage or when Parkinson’s is particularly challenging.Complementary therapies should always be used in addition to conventional medicine not instead of it. that this can take time and will probably fluctuate depending on how difficult you are finding Parkinson’s and what else is going on in your life. which can be contraindicated with or interfere with anti-Parkinson’s medication. 101 . Although it may not always be easy. most people with Parkinson’s say that developing as positive an attitude as possible towards their condition makes an enormous difference to how they lead their lives. however. Want to know more? • See the PDS booklet Complementary Therapies and Parkinson’s (code B102). This is a very individual thing – what works for one person will not work for another. You should also make sure that the therapist you use is properly trained and affiliated to a recognised regulating professional body.

Keeping active and maintaining your interests Make sure that Parkinson’s doesn’t become the sole focus of your life. art. Don’t give up if you find a much-loved activity more difficult. music – can be enjoyable and provide a way of expressing their feelings about their life and having Parkinson’s. Doing something creative Many people find that expressing themselves through creative therapies – such as writing. so using relaxation techniques. • Keep a sense of perspective and your sense of humour. it is important that you seek help before your situation reaches a crisis point. This will help 102 . Ensure that you do plenty of exercise and continue to enjoy the hobbies or interests you had before you were diagnosed and/or develop new ones. Educating yourself about Parkinson’s and meeting others in a similar position Ways to do this include reading PDS resources and books and attending talks at your local PDS branch or YPN group. Stress can make the symptoms of Parkinson’s worse.• View problems as challenges rather than as something insurmountable. Breaking them down into smaller stages can often help. who should be able to refer you to other services that can support you. Discuss how you are feeling with your doctor or PDNS. An occupational therapist may be able to suggest ways of making things easier to manage – this may be by adjusting the way you do something or by using pieces of equipment. If you are dealing with difficult emotions or are depressed. can be beneficial. including some complementary therapies.

which in turn will help you to make informed decisions about your care. However.you understand more about your condition and treatment. 103 . Want to know more? • Living with a Long-term Illness: the facts by Frankie Campling and Michael Sharpe focuses on self-help and maintaining a positive attitude when you have a long-term health condition. Meeting other people with Parkinson’s and their families through local PDS branches or YPN groups helps many people to feel less alone and to make new friends with whom they can share experiences and ideas. Helping others Many people say that they gain a lot of satisfaction from helping others with Parkinson’s through raising awareness the condition. don’t compare your situation or treatment with someone elses as everyone experiences Parkinson’s differently. working as a volunteer for local PDS branches or YPN groups and fundraising. Contact the PDS for more information on how you can help.

YPN isn’t a group at all – it’s a collection of hugs that diffuse my condition. Hugs I want to keep receiving and start giving. Shared experience becomes specific. like me. I need to find specific people who. Kat. So here I am on a Saturday in a group (shudder) and one full of people who are ill (bigger shudder). This sets a precedent – the first group meeting I have attended voluntarily. but a whole new sleep pattern that one needs to adapt to. Then you need to share. So why do I suddenly need a group? I need contact. who has come with me. If I told my step-daughter.Personal experiences by Colleen Aird. If being involved means that my small contribution to their very big need helps to embrace another person with Parkinson’s. she would have some level of understanding. “I can’t sleep”. But if I tell a fellow person with Parkinson’s. including me. The easiest way is to seek out others with the same objective. The whole concept of being in a large group for meetings just doesn’t work for me. 104 . are young and have Parkinson’s. they would know that it’s not about the occasional restless night. Why do I need this contact? At first it was a reassurance thing – you suddenly get dumped with this condition and you need to benchmark it. who was diagnosed with Parkinson’s in 2005 at the age of 42 I have never been the type of person who does ‘groups’. then count me in.

Resources and contacts 100 Questions and Answers about Parkinson’s Disease Dr Abraham Lieberman with Marcia McCall (2003) ISBN 07637 0433 4 Living with a Long-term Illness: the facts Frankie Campling and Michael Sharpe (2006) ISBN 0 19 852882 5 Living with Parkinson’s Disease Bridget McCall (2006) ISBN 0 85969 957 9 Parkinson’s at Your Fingertips (3rd edition) Bridget McCall and Adrian Williams (2004) ISBN 1 85959 110 9 Parkinson’s Disease: A Guide to Treatments. Therapies and Controlling Symptoms David A Grimes (2004) ISBN 1 84119914 6 The New Parkinson’s Disease Handbook Dr Harvey Sagar (2002) ISBN 0 09 18813874 Parkinson’s Disease: A Guide for Patient and Family Drs Jacob Sage and Roger C Duvoisin (2001) ISBN 0 7817 2977 105 .

Blackwell Publishing (2006) ISBN 978 1405139762 106 . Resources and Treatment Barbara Blake-Krebs and Linda Herman (2002) ISBN 0 89793 340 7 Miscellaneous The Patient’s Internet Handbook Robert Kiley and Elizabeth Graham. Royal Society of Medicine (2001) ISBN 978 1853154980 How to read a paper: the basics of evidence-based medicine (3rd revised edition) Trisha Greenhalgh.Parkinson’s Disease: A Self-Help Guide for Patients and their Carers Dr Marjan Jahanshahi and Professor C David Marsden (1998) ISBN 0 285 63317 1 Personal accounts Health is Between Your Ears: Living with a Chronic Illness Svend Andersen (2002) ISBN 87 88130 49 5 Living Well with Parkinson’s Glenna Wotton Atwood (2005) ISBN 0471 282 235 Lucky Man Michael J Fox (2003) ISBN 0 091885671 Six Days: the story of the making of the Chester Cathedral Creation Window (created by Rosalind Grimshaw who has Parkinson’s) Painton Cowen (2003) ISBN 1 901970 33 7 When Parkinson’s Strikes Early: Voices. Choices.

www.ox. Patient UK is a useful online resource produced by Drs Tim and Beverley Kenny. If you live in Scotland. Based in the USA.uk. run by Stephen Barrett who is a retired doctor.patient.uk/bandolier Quackwatch is a non-profit organisation.nhsdirect.medicine. This evidence-based website provides a wealth of information on health conditions. www. and put the results forward as simple bullet points of those that worked and those that did not: a bandolier with bullets”.co.org 107 . myths. two English GPs. Northern Ireland and Wales.uk Bandolier is an independent journal and website about evidencebased healthcare written by Oxford scientists. fads. If you or a member of your family fall ill or you want some general information about health services or conditions. it has an international focus and attempts to “combat health-related frauds. On their website. maintaining and a healthy lifestyle. they say that “the impetus behind Bandolier was to find information about evidence of effectiveness (or lack of it). nurse-led telephone information service for advice.quackwatch. you can phone the 24-hour.ac. www.Websites NHS Direct is the NHS’s information service for patients in England. and contact details for many voluntary organisations. and fallacies”. Local rate charges apply. NHS24.nhs. www. there is a similar service.

uk PDS special interest groups SPRING (Special Parkinson’s Research Interest Group) PO Box 440 Horsham West Sussex RH13 0YE Tel: 01403 730 163 Email: secretary@spring.org.parkinsons.uk Younger Parkinson’s Network (YPN) PO Box 33209 London SW1V 1WH Helpline: 0808 800 0303 Email: enquiries@parkinsons.uk Age Concern – Aid Call Ltd Linhay House Linhay Business Park Ashburton Devon TQ13 7UP Tel: 0800 77 22 66 Email: info@aidcall-alarms.aidcall.co.co.yap-web.uk/ni Anxiety UK Zion Community Resource Centre 339 Stretford Road Hulme Manchester M15 4ZY Tel: 08444 775 774 www.aidcall.org.co.co.uk www.Useful contacts Sharward Services Ltd (PDS distribution house) Westerfield Business Centre Main Road Westerfield Ipswich Suffolk IP6 9AB Tel: 01473 212115 Fax: 01473 212114 Email: pds@sharward. parkinsons.abilitynet.net 108 .org.anxietyuk.org.org.uk Northern Ireland: Tel: 0808 100 45 45 www.uk www.uk Organisations AbilityNet PO Box 94 Warwick CV34 5WS Helpline: 0800 269545 (Freephone) www.uk http://spring.

uk British Association/College of Occupational Therapists 106–114 Borough High Street Southwark London SE1 1LB Tel: 020 7357 6480 www.The Blue Cross Shilton Road Burford Oxon OX18 4PF Tel: 01993 822 651 www.uk Carers UK 20 Great Dover Street London SE1 4LX CarersLine: 0808 808 7777 (Wednesday–Thursday 10am–12noon and 2pm–4pm) Tel: 020 7378 4999 www.uk British Association for Counselling and Psychotherapy 15 St John’s Business Park Lutterworth Leicester LE17 4HB Tel: 01455 883300 www.org.uk Care & Repair Cymru Norbury House Norbury Road Fairwater Cardiff CF5 3AS Tel: 029 20576 286 www.org 109 .careandrepair-england.bluecross.careandrepairscotland.org. org.org.cot.careandrepair.co.uk Care & Repair (England) The Renewal Trust Business Centre 3 Hawksworth Street Nottingham NG3 2EG Tel: 0115 950 6500 www.bacp.uk Care & Repair Forum Scotland 135 Buchanan Street Suite 2.uk British Medical Association BMA House Tavistock Square London WC1H 9JP Tel: 020 7387 4499 www.carersuk.5 Glasgow G1 2JA Tel: 0141 221 9879 www.co.org.bma.

org.gov.depressionalliance.uk Chartered Society of Physiotherapy 14 Beford Row London WC1R 4ED Tel: 020 7306 6666 www.uk Department for Work and Pensions Disability Benefit Centre 3 Olympic House.dlf.org.uk The Cinnamon Trust 10 Market Square Hayle Cornwall TR27 4HE Tel: 01736 757 900 www.org.co.org.learning-for-living.org Disabled Living Foundation 380–384 Harrow Road London W9 2HU Tel: 020 7289 6111 Helpline: 0845 130 9177 (Monday–Friday 10am–4pm) www.Cats Protection National Cat Centre Chelwood Gate Haywards Heath Sussex RH17 7TT Tel: 08702 099 099 www.uk Citizens Advice (address for National Association known as NACAB) Myddleton House 115–123 Pentonville Road London N1 9LZ Tel: 020 7833 2181 www.adviceguide.org.org.dwp.uk City & Guilds (Learning for Living course for carers) Tel: 01455 201020 www.csp.citizensadvice. Olympic Way Wembley HA9 ODL Helpline: 0800 882200 Textphone: 0800 243355 www.uk 110 .gov.uk Depression Alliance 212 Spitfire Studios 63–71 Collier Street London N1 9BE Tel: 0845 123 2320 www.uk Jobcentre Plus website: www.uk Internet advice guide: www.jobcentreplus.cats.cinnamon.

co.uk The Equality and Human Rights Commission 3 More London Riverside Tooley Street London SE1 2RG Tel: 0845 604 6610 Textphone: 0845 604 6620 www.equalityhumanrights.com Scotland: The Optima Building 58 Robertson Street Glasgow G2 8DU Tel: 0845 604 5510 Textphone: 0845 604 5520 Wales: Freepost RRLR-UEYB-UYZL Third Floor.first-steps.org.Disabled Parents Network 81 Melton Road West Bridgford Notts NG2 8EN Tel: 0300 3300 639 www. 89–93 Fonthill Road London N4 3JH Tel: 0800 018 4730 www.helptheaged.dppi.gardeningfordisabledtrust. org.uk Disability Pregnancy and Parenthood International National Centre for Disabled Parents Unit F9.disabledparentsnetwork. org.expertpatients.org Gardening for the Disabled Trust PO Box 285 Tunbridge Wells Kent TN2 9JD www.uk Northern Ireland: Ascot House Shaftesbury Square Belfast BT2 7DB Tel: 02890 230 666 111 .uk First Steps to Freedom Helpline: 0845 120 2916 www. 3 Callaghan Square Cardiff CF10 5BT Tel: 0845 604 8810 Textphone: 0845 604 8820 The Expert Patients Programme Tel: 020 7922 7860 www.uk Help the Aged 207–221 Pentonville Road London N1 9UZ Tel: 020 7278 1114 www.org.

uk National Animal Welfare Trust Tyler’s Way.nhs.co.nhs24.nhsdirect.com No Panic Helpline: 0808 808 0545 www.org.learndirect.motability.Scotland: 11 Granton Square Edinburgh EH5 1HX Tel: 0131 551 6331 Wales: 12 Cathedral Road Cardiff CF11 9LJ Tel: 02920 346 550 learndirect PO Box 900 Leicester LE1 6ER Tel: 0800 101 901 (Monday– Sunday 7am–11pm) www.uk NHS24 (Scotland) Tel: 08454 242424 www.wales.uk NHS Direct (Wales) Tel: 0845 4647 www.mind.co.uk MedicAlert 1 Bridge Wharf 156 Caledonian Road London N1 9UU Freephone: 0800 581420 www.uk NHS Direct (England and Northern Ireland) Tel: 0845 4647 Textphone: 0845 606 4647 www.nawt.uk Motability (Car Scheme) City Gate House 22 Southwark Bridge Road London SE1 9HB Tel: 0845 456 4566 www.org.nhs.nopanic. Watford-By-Pass Watford Herts WD25 8WT Tel: 020 8950 0177 www.org.uk 112 .nhsdirect.uk Mind 15–19 Broadway London E15 4BQ Tel: 020 8519 2122 Helpline: 08457 660163 www.medicalert.org.

nhs.30am–4.uk Northern Ireland: www.opfs.nhs.oneparentfamilies.show.scot. Patient’s Association PO Box 935 Harrow Middlesex HA1 3YJ Tel: 020 8423 9111 Helpline: 0845 608 4455 www.org. 9.nhs.hscni.otip.oneparentfamilies.uk/ manchester One Parent Families Scotland 13 Gayfield Square Edinburgh EH1 3NX Tel: 0131 556 3899 Scotland Lone Parent Helpline: 0808 801 0323 (Monday–Friday.org.patients-association.uk The Pet Fostering Service.uk One Parent Families Manchester Room 2.org.uk Wales: www.net Scotland: www.uk 113 . Scotland Tel: 01877 331 496 www.2 Windrush Millenium Centre 70 Alexandra Road Moss side Manchester M16 7WD Tel: 0161 636 7564 www.Occupational Therapists in Independent Practice Tel: 0800 389 4873 www.30pm) www.org.wales.9am–5pm) www.uk Patient Advice and Liaison Services (PALS) Contact your local primary care trust.uk Primary care trusts In your local phone directory or via the following websites: England: www.org.uk One Parent Families/ Gingerbread 255 Kentish Town Road London NW5 2LX Tel: 020 7428 5400 Helpline: 0800 018 5026 (Monday–Friday.co.pfss.

radar.org PSP (Europe) Association PSP House 167 Watling Street West Towcester Northants NN12 6BX Tel: 01327 322410 www.uk Talisman Ltd (SOS Talisman) 21 Grays Corner Ley Street Ilford Essex IG2 7RQ Tel: 020 8554 5579 www.ac.uk (all enquiries) www.org.30pm) Email: office@msaweb.sostalisman.co.uk 114 .The Princess Royal Trust for Carers Unit 14 Bourne Court Southend Road Woodford Green Essex IG8 8HD Tel: 0844 800 4361 www.rspca.pspeur.msaweb.uk Sarah Matheson Trust Southbank House Black Prince Road London SE1 7SJ Tel: 0207 940 4666 (all enquiries) (Monday–Friday.org.30am–4.uk RSPCA Enquiries service Wilberforce Way Southwater Horsham West Sussex RH13 9RS Tel: 0300 1234 555 www. 9.rcpsych.co.uk Relate Premier House Carolina Court Lakeside Doncaster DN4 5RA Tel: 0300 100 1234 www.org.carers.uk Royal College of Psychiatrists 17 Belgrave Square London SW1X 8PG Tel: 020 7235 2351 www.co.relate.org RADAR 12 City Forum 250 City Road London EC1V 8AF Tel: 020 7250 3222 www.

vitalise.org.thrive.uk 115 .uk Vitalise 12 City Forum 250 City Road London EC1V 8AF Tel: 0845 345 1972 www.org.Thrive The Geoffrey Udall Centre Beech Hill Reading RG7 2AT Tel: 0118 988 5688 www.

Notes 116 .

........... • A carer for someone with Parkinson’s  I’ve been a carer for ______ years................  117 .... ............... we like to find out what readers think of publications......................... Are you? (please tick) • Someone with Parkinson’s  I have had Parkinson’s for _____ years........ 7 is very useful) 1 2 3 4 5 6 7 Which section did you find most helpful? ............. We would be extremely grateful if you would complete this form and return it to PDS National Office (contact details overleaf)...PDS Publications Response Form To ensure that the PDS is providing as good a service as possible...................... Thank you........ • A relative of someone with Parkinson’s  • A friend of someone with Parkinson’s  • A professional working with people with Parkinson’s  This booklet: Living with Parkinson’s Where did you get the publication from? (please tick) Sharward Services  Information day  PDS branch  Hospital  Doctor’s practice  Pharmacy/Chemist  PDS website  Other  How useful have you found the publication? (please circle a number: 1 is not very useful.................

.................................................................................................................... it will help us give a better service in future............ Many thanks for your help................................................................................................................ 118 .............................. Address: ............................... Parkinson’s Disease Society................................. Date of birth:.....................................................................................Which section did you find least helpful?................................Tel: .................................................... ........... .............. Are there any topics you felt should have been listed but weren’t? ............................. ........................... Email: .............................................. London SW1V 1EJ or fax to 020 7233 9908..................... You do not have to give your details below................................. Have you found the publication easy to read/use? Yes No Any other comments on this publication?............................. but if you do so.... Thank you for your help........ ................................................................................................................................................ 215 Vauxhall Bridge Road........................................................................................................... Is there another topic which you think the PDS should provide a booklet/information sheet on? ........ Are you a PDS member? (please circle) Yes No No Would you like information about PDS membership? Yes Please cut out your completed form and post it to: Publications Department.................................. Name: .. Postcode: ......

Information supplied will be used for monitoring services.The Parkinson’s Disease Society of the United Kingdom is registered under the Data Protection Act and all information you supply through the response form will be treated under the terms of the Act. . The PDS will hold this data on its own database and will not release it to any commercial organisation.

2008 Charity registered in England and Wales No. Registered No.uk website www. London SW1V 1EJ Tel 020 7931 8080 Fax 020 7233 9908 PDS Helpline (free) 0808 800 0303 Textphone: 0800 111 4204 (The Helpline is a confidential service.org.org.© Parkinson’s Disease Society of the United Kingdom. Calls are free from UK landlines and some mobile networks.) email enquiries@parkinsons. A company limited by guarantee. 258197 and in Scotland No.parkinsons.uk 120 Designed and produced by PDS Information Resources February 2009 Code B077 . 948776 (London) Registered Office 215 Vauxhall Bridge Road. SC037554.

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