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Anybody, Any Age A G U I DE FOR PEOPL E WITH YOU N G- ON SE T PAR K I N SON ’ S


Anybody, Any Age Anybody, Any Age | A G U I D E F O R P E O P L E W I T H Y O U N G - O N S E T P A R K I N S O N ’ S

A G U I D E F O R P E O P L E W I T H YO U N G - O N S E T PA R K I N S O N ’ S

CONTENTS foreword by John Walker

2

foreword by Bruce Cutfield

2

introduction

3

chapter 1

what is parkinson’s?

4

chapter 2

drugs and surgery

8

chapter 3

staying independent and taking control

11

chapter 4

emotions

16

chapter 5

related symptoms

21

chapter 6

partners, families and friends

25

chapter 7

intimacy

30

chapter 8

being, and becoming, a parent

33

chapter 9

employment and finances

37

chapter 10

living on your own

44

chapter 11

life and leisure

47

chapter 12

resources and support

52

thanks

ISBN 10: 0-473-11680-4 ISBN 13: 978-0-473-11680-4

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Foreword Anybody, Any Age | A G U I D E F O R P E O P L E W I T H Y O U N G - O N S E T P A R K I N S O N ’ S

2 I was 44 when I was told that I had Parkinson’s. Like

When I was first diagnosed with Parkinson’s at

others quoted in this book I have run the gauntlet of

42 it was difficult to find other people who could

emotions and share the disbelief and anger experience

understand what I, my wife Chris and our children were

by many. I am frustrated that despite the excellent work

experiencing. In response to this we worked with other

of researchers worldwide I and my family still have to

younger members of Parkinsons New Zealand to start

live with Parkinson’s everyday. It is important to not let

UPBEAT - a special interest group for younger people

Parkinson’s dictate how we live our lives and to remain

living with Parkinson’s.

positive. While we wait impatiently for a cure this

UPBEAT’s mission is to ‘improve the quality of life of

booklet Anybody, Any Age can be an invaluable

people with early onset Parkinson’s and their families

resource not only for those of us with Parkinson’s but

by sharing information, experiences and strategies

also for our families.

through interpersonal communication and support, until there is a cure.’

Parkinsons New Zealand and I hope that you find this

This booklet aims to help meet this mission and it is

booklet helpful and wish New Zealanders of all ages the

my hope that you find it both informative and helpful.

best in their journey with Parkinson’s.

If you are a member of Parkinsons New Zealand with young-onset Parkinson’s I would urge you to join UPBEAT and benefit as we have from sharing, support, information and friendship.

John Walker New Zealand Olympian Bruce Cutfield Vice-Chairperson Parkinsons New Zealand Founder of UPBEAT


Introduction Anybody, Any Age | A G U I D E F O R P E O P L E W I T H Y O U N G - O N S E T P A R K I N S O N ’ S

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who the booklet is for

further information

This booklet has been written to provide information to

This booklet does not go in depth into medical

people who are diagnosed with Parkinson’s before aged

diagnosis, the causes of Parkinson’s and drug treatment.

60. Studies show that 15% percent of people diagnosed

If you want more information on these, Parkinsons NZ

1

with Parkinson’s are aged under 50 .

has a comprehensive library of material available.

The booklet has been put together by Parkinsons

Other sources of information and support are given at

New Zealand (Parkinsons NZ) working with people with

the end of this booklet.

young-onset Parkinson’s, Parkinsons NZ Field Officers and health professionals. It sets out to: Q

answer the common questions that people with young-onset Parkinson’s have

Q

provide a general guide for people with young-onset Parkinson’s

Q

share the experiences of other people with youngonset Parkinson’s to provide a personal perspective on living with Parkinson’s.

Everyone’s experience of Parkinson’s will be different. Each person will have his or her own way of dealing with the condition – what works for one person will not necessarily work for another.

1

Quinn N (editor), ‘Parkinsonism’, Balliere’s Clinical Neurology,

Balliere Tindall, 1997, ISBN 0 7020 2309 4.


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4

What is Parkinson’s?


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Anybody, Any Age Age | | A A G AR RK K II N N SS O ON N ’’ SS Anybody, Any GU U II D D EE FF O OR R P P EE O OP P LL EE W W II TT H H Y YO OU UN NG G -- O ON N SS EE TT P PA

David, diagnosed age 52 I had been suffering for 18 months with what was thought to be Chronic Fatigue Syndrome, any exertion disabling me for days. Towards the end of this time I developed a sore back, and a lack of movement in my left arm. My GP suspected Parkinson’s which was confirmed by a local physician. He was very negative about my future. Like many people, I thought Parkinson’s only affected the elderly. Never the less I was relieved to know that my sickness had a name and could be controlled by medication. As we left the clinic it was straight down to the library to find out what we faced, we joined the local Parkinson’s division and booked a neurologist. Information is Power! Soon after that Upbeat was started and we attended the first weekend seminar. I was shocked, at first, by the condition of some of the delegates. Yet as the weekend progressed I came to admire them and knew that whatever Parkinson’s threw at me, I would be able to cope.

about Parkinson’s Parkinson’s Disease is sometimes called a “Movement Disorder”. This is because one of the key parts of the brain that is affected is a system that controls movement. In this system, two chemical messengers, dopamine and acetylcholine, work in balance to transmit messages between nerve cells and muscles. In people with Parkinson’s this balance is upset because some of the dopamine-producing cells are lost. When about 80% of dopamine has been lost, the symptoms of Parkinson’s appear and the level of dopamine will continue to fall over many years. This can cause difficulties such as: Q

tremor

Q

stiffness

Q

slowness of movement.

The reason for this loss of dopamine in the brains of people with Parkinson’s is currently unknown. It is not usually thought to be directly inherited although some research has suggested that some people may inherit a genetic susceptibility, which, combined with other factors, may make them more likely to develop Parkinson’s. Research is also concentrating on the role that environmental factors may play as possible causes. Other parts of the brain may also be affected in Parkinson’s Disease, differently in different people. This can lead to symptoms with emotions, thinking, and other aspects of physical function besides movement.


Anybody, Any Age | A G U I D E F O R P E O P L E W I T H Y O U N G - O N S E T P A R K I N S O N ’ S

6 There are other, rarer conditions similar to Parkinson’s,

sometimes when people have had Parkinson’s for a very

such as Multiple System Atrophy (MSA) and Progressive

long time and/or are at an advanced age, their general

Supranuclear Palsy (PSP), which are grouped with

physical condition may make it harder for them to fight

Parkinson’s under the ‘umbrella term’ parkinsonism.

other illnesses or injuries.

If you have one of these conditions, Parkinsons NZ can provide help and information.

getting the diagnosis There are currently no laboratory tests that can be

progression of Parkinson’s

done to diagnose Parkinson’s. Diagnosis is usually

Parkinson’s symptoms usually begin slowly, develop

made clinically with the doctor relying on medical

gradually and in no particular order. Everyone with

examination, symptoms and medical history. Blood

Parkinson’s is different and may have a different

tests and scans may be given, but these are generally

collection of symptoms. Response to treatment will also

used to rule out other conditions which may present

vary from person to person. The nature and severity

with similar symptoms.

of symptoms and the rate at which the condition progresses will also be individual.

Parkinson’s is often seen as a condition that affects only older people. So younger people with Parkinson’s

how will I be affected in 5 to 10 years time?

can find it hard to get an accurate diagnosis. However, the young onset diagnosis of celebrities such as actor

This is probably the most common question asked, but

Michael J Fox and Olympian John Walker and the

it is not possible to give a concrete answer because of

awareness raising work of Parkinsons NZ, has helped

the individuality of the condition. Symptoms may take

to improve recognition.

years to progress to a point where they cause major difficulties and many of these symptoms can be treated.

Anyone who suspects they may have Parkinson’s should

Advances in treatments for Parkinson’s have lead to

ask their GP for a referral to a specialist who deals with

a much better quality of life than was possible a few

Parkinson’s, usually a neurologist (a specialist doctor

years ago.

who treats conditions affecting the brain, spine and peripheral nervous system).

Parkinson’s by itself does not directly cause people to die. With current treatments, life expectancy for someone with Parkinson’s is fairly normal. However,


real lives Anybody, Any Age | A G U I D E F O R P E O P L E W I T H Y O U N G - O N S E T P A R K I N S O N ’ S

John, diagnosed aged 53

after diagnosis Once you are diagnosed with Parkinson’s: Q

let yourself adjust; don’t make major decisions about your life until you have had time to accept the diagnosis and seek advice

Q

get the most from your GP, specialist and other health professionals involved in your care.

It is a good idea to be prepared with a list of questions when you visit any of these professionals so you can work with them to find the best way to live with your condition. Parkinsons NZ recommends that everyone with Parkinson’s should be under the care of a neurologist or other doctor with a special interest in Parkinson’s. Q If

you have not been referred to a specialist, ask your

GP to refer you. Many neurologists work with Parkinsons NZ Field Officers who provide support to people with Parkinson’s and their families and act as a link to other services in the hospital and community. Contact details for all Field Officers are available on our website www.parkinsons.org.nz or by phoning 0800 473 463.

I told Michael, my 13 year old son, when I came out of the specialist’s office and we had a sombre drive back from Auckland to New Plymouth. My GP had identified the symptoms as Parkinson’s so I was somewhat prepared for the specialist’s confirmation. I naturally told the rest of my immediate family but we kept it quiet for a couple of years. I had to come to terms with the reality of Parkinson’s. I went through the usual “why me” and “how on earth did I get this” stage – went to bed early, avoided social occasions and was less confident. After a couple of years, I came to accept my situation and feel grateful that I didn’t have a worse affliction. I gave up my mid-day rests, stayed up later, drank more wine and decided to enjoy life and do the things I had vaguely planned for my 60s. I went to the Chatham Islands, walked the Inca Trail, went to Sydney to see The Lion King and next year I’m stopping work for a year and my wife and I are going to do an around the world trip, visiting some interesting places like Samarkand in Central Asia. I have decided that I am going to lead a full life and Parkinson’s just has to fit in.

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8

Drugs & Surgery


Anybody, Any Age | A G U I D E F O R P E O P L E W I T H Y O U N G - O N S E T P A R K I N S O N ’ S

9 Although there is at present no cure for Parkinson’s,

If you are uncertain about the advice you receive,

many treatments are available to help control the

especially about decisions concerning initiating drug

symptoms and maintain a good quality of life. This

treatments, you may want to ask for more time to make

chapter outlines medical treatments offered by doctors.

up your mind, or find out more.

drugs

There are also many medical treatments for the

For younger people with moderate symptoms,

non-movement symptoms of Parkinson’s, including

your doctor may advise against prescribing drugs

antidepressants, antipsychotics, anxiolytics and

immediately, and will instead recommend a healthy

cognition-enhancing medications. GPs and specialists

lifestyle with exercise and relaxation as an interim

often review and prescribe these in tandem.

measure. Younger people live with Parkinson’s for

Broadly speaking, side effects of movement disorder

many years, and the side effects of some drugs can

medications may be problematic for our mental health

cause difficulties in the long term. These may include

when we have Parkinson’s – and vice versa. Both

involuntary movements (‘dyskinesias’) and fluctuations

groups of medicine may also affect other aspects of our

in mobility (described as ‘on/off’) when taking levodopa.

physical health. This means that we need to be alert to the big picture and not just the movement symptoms.

For these reasons, your doctor may try to use levodopa sparingly when treating symptoms in the younger

If you would like further information about Parkinson’s

person with Parkinson’s, particularly in the early

medication Parkinsons NZ have a booklet The Drug

stages. Dopamine agonists on their own may be

Treatment of Parkinson’s - ask your Field Officer for a

used in preference to levodopa. Anticholinergics and

copy or contact National Office.

amantadine may also be prescribed. In many cases levodopa will be the most effective drug and most specialists will recommend taking the lowest dose possible, to try to minimise the risk of side effects. However, decisions about treatment options need to take into account how Parkinson’s is affecting you and your personal circumstances, including your current priorities and needs. If you have any questions about your Parkinson’s drug regimen see your GP or neurologist.


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surgery Surgical techniques to treat Parkinson’s have been highly publicised in the last few years. Many people want to know if surgery is a suitable alternative to drug treatment. Prior to the introduction of drugs such as levodopa in the late 1960s, operations were used more widely to treat Parkinson’s, but were then largely abandoned, when it was found that levodopa treatment was initially much more effective. However, problems of motor fluctuations and drug-induced involuntary movements (‘dyskinesias’) began to emerge with longterm levodopa treatment. In recent years, there has been a revival of interest in surgical techniques and operations do take place today. Greater knowledge of how the brain works, technological advances and more precise surgical techniques have all fuelled developments, and further research continues. Surgery does not cure Parkinson’s, but can offer relief from some of the symptoms and certain side effects of drugs in some people. However, in general, surgery is really for those who have had the condition for some time and whose symptoms are poorly controlled with drugs. Even among this group, surgery will not be suitable for everyone. It can have both positive and negative effects upon the non-movement symptoms of Parkinson’s such as those involving our thinking or feelings.


Anybody, Any Age | A G U I D E F O R P E O P L E W I T H Y O U N G - O N S E T P A R K I N S O N ’ S

3 Staying independant and taking control 11


Anybody, Any Age | A G U I D E F O R P E O P L E W I T H Y O U N G - O N S E T P A R K I N S O N ’ S

12 Drugs are the cornerstone of treatment for the move-

HOW TO GET REFERRED

ment symptoms of Parkinson’s, but other therapies

Usually through a GP, neurologist or Parkinson NZ

also play a vital role in managing the condition. Getting

Field Officer.

early advice about these is important as they can help you maintain independence. Some of the professionals

occupational therapy

mentioned will have a special interest in neurological

WHAT IT DOES

conditions, including Parkinson’s. Parkinsons NZ has

Focuses on maintaining independence. Therapists can

more information available on the therapies below

assess your home or work situation and recommend

and many of our divisions run exercise classes.

ways of making activities and tasks easier. They can also advise on leisure activities and driving.

Over time you will build relationships with several health professionals, the key is to seek out professionals

HOW TO GET REFERRED

who you trust and this will help you take control.

Usually through your GP, neurologist or Parkinsons NZ Field Officer.

physiotherapy WHAT IT DOES

counselling

Uses physical treatment and exercises to maintain loose

Counsellors offer support to you and your family and

joints and muscles to improve co-ordination, posture

can help you deal with the diagnosis and work through

and breathing. Regular exercise is really important in

potential emotional and practical problems. The aim

helping manage Parkinson’s.

of counselling is to establish a therapeutic relationship based on understanding, warmth, genuine concern, and

HOW TO GET REFERRED

respect. This allows the individual to vent emotions,

Usually through a GP, neurologist or Parkinsons NZ

voice concerns, and sort out thoughts and feelings

Field Officer.

about specific matters.

speech and language therapy

HOW TO GET REFERRED

WHAT IT DOES

Usually through your GP, neurologist or Parkinsons NZ

Focuses on all aspects of communication, including

Field Officer.

speech, facial expression, body language. This therapy also aids with swallowing problems.


real lives Anybody, Any Age | A G U I D E F O R P E O P L E W I T H Y O U N G - O N S E T P A R K I N S O N ’ S

Scott, diagnosed aged 37

psychology WHAT THEY DO Clinical psychologists are trained in the diagnosis and management of psychological problems including anxiety and depression and utilise a range of approaches to assist the individual, one of which is prescribing medication for depression and anxiety. HOW TO GET REFERRED Usually through your GP, neurologist or Parkinsons NZ Field Officer.

dietician WHAT THEY DO A dietician can help you to ensure that you are getting a balanced diet. Eating a well balanced, healthy diet can benefit anyone, but for people with Parkinson’s it takes on an added emphasis. Your diet should include a variety of foods from all four food groups: grain products, vegetables and fruit, dairy products and proteins like meat and eggs. In addition, the type of food and the time it is eaten could change how some medications work. For example, protein may slow the action of levodopa. Drinking plenty of water is very important, and it is a good idea to keep alcohol consumption in moderation. HOW TO GET REFERRED Usually through your GP, neurologist or Parkinsons NZ Field Officer.

I found that no matter how hard I tried to ‘cheer up’ I wasn’t coping that well. I talked through things often with my wonderfully supportive circle of friends but still felt awfully low. Eventually I got over my prejudices against and fear of what I thought was only for the mad, bad or sad and saw a professional. Well what a difference now that the ‘black dog’ is no longer hanging over me. My advice is go and talk to someone as soon as you can.

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real lives Anybody, Any Age Age | | A A G AR RK K II N N SS O ON N ’’ SS Anybody, Any GU U II D D EE FF O OR R P P EE O OP P LL EE W W II TT H H Y YO OU UN NG G -- O ON N SS EE TT P PA

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Malcolm, diagnosed aged 40 Two or three years after I was diagnosed with Parkinson’s I developed some problems with urinary continence. A friend suggested trying reflexology which involved massaging the feet. I decided to give it a go and enjoyed the experience. The therapist showed me how to use a foot roller which I used to activate the reflexes on the soles of my feet and my bladder points to improve muscle tone in my bladder. I am pleased to report that all symptoms disappeared after one month and I have remained symptom free for 15 years.

complementary therapies Complementary therapies are non-medical treatments which may be used in addition to conventional medicine. Many people with Parkinson’s find these approaches beneficial for postural control, fitness, relaxation and personal development. Those used for relaxation have been found to be particularly helpful as stress makes the symptoms of Parkinson’s worse. Techniques used include: Q acupuncture Q Alexander

Technique

Q aromatherapy Q Bowen

therapy

Q massage Q reflexology Qtai

chi

Qyoga

There is very little scientific evidence to say whether these therapies are beneficial, although the experience of many people with Parkinson’s is positive. However, what works for one person may not work for another. It may be a case of trying a range of therapies to see if there is something that suits your particular needs. However, some therapies can be expensive.


real lives Anybody, Any Age | A G U I D E F O R P E O P L E W I T H Y O U N G - O N S E T P A R K I N S O N ’ S

Diana, diagnosed aged 44 Parkinsons NZ recommends that people interested in trying complementary therapies should consult their doctor to ensure that the complementary approach in question is suitable. This is particularly true of any herbal medicines which may interact with Parkinson’s drugs. It is also important that people find a qualified therapist. GP surgeries can often provide a list of local practitioners. Parkinsons NZ has information on some of the techniques used by people living with Parkinson’s.

I tried homeopathy, but felt no different. I now have a massage every week and that has made a huge difference. I don’t cramp so often and the pain I used to get in my legs and arms is non existent.

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Emotions


real lives feelings at diagnosis Anybody, Any Age | A G U I D E F O R P E O P L E W I T H Y O U N G - O N S E T P A R K I N S O N ’ S

Pippa, diagnosed aged 25 The impact of a Parkinson’s diagnosis on a younger person may be most significant in regard to the psychological and emotional effects that they experience. As the condition begins at an earlier age, diagnosis comes at a time when many younger people are still leading very active lives, perhaps developing a chosen career, raising a family, or thinking about starting one. The period after diagnosis can often be a particularly difficult time. There can be many different and conflicting emotions. Many people feel devastated. Some feel relief that a name has been given to the problems that they have, particularly if they have had difficulty getting a diagnosis. Others try to cope by denying what is happening. Others hide it or have trouble telling their families or friends. Many people feel angry, anxious and depressed. Acknowledging these feelings and accepting the diagnosis is the first major step. It is an on-going process and for most people will take some time.

To be diagnosed at such a young age is extremely challenging. I did suffer a spell of depression which was very scary, I am able to deal with that quite well now. People do still look/stare at me sometimes wondering why I’m so slow doing some things.

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real lives life after diagnosis Anybody, Any Age Age | | A A G AR RK K II N N SS O ON N ’’ SS Anybody, Any GU U II D D EE FF O OR R P P EE O OP P LL EE W W II TT H H Y YO OU UN NG G -- O ON N SS EE TT P PA

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Diana, diagnosed aged 44 We didn’t cope at first. Both tried not to worry the other about it. Both trying hard not to let it affect our life. This disease was going to happen some time in the future. I worked as hard as ever pretending nothing had changed. When I started to struggle with my health, my husband and I fought over getting a house cleaner. At this time I was working 40 to 45 hours a week. I guess the cleaner was the realisation that the disease was kicking in. In summary I crashed completely and was forced to give work up. We now both accept the future as it comes. We accept we can still do most things but in a slightly different way. We now are much closer than we were and the key to our success is communication. Looking back if only we shared our feelings earlier a lot of grief may have been avoided.

Although it may not always be easy, particularly around the time of diagnosis, most people say that developing as positive an attitude as possible towards their Parkinson’s can make an enormous difference to how they live their lives. However, this does take time. Accepting the diagnosis is often the first step towards finding your own way of coping with Parkinson’s. Remember too that even people who have managed to develop a positive attitude towards having Parkinson’s, will admit that some days they find this difficult to maintain. Everyone will have good and bad times.


real lives finding support Anybody, Any Age | A G U I D E F O R P E O P L E W I T H Y O U N G - O N S E T P A R K I N S O N ’ S

John, diagnosed aged 53 Talking to someone about how you feel and about your situation may help you to acknowledge the emotions you have; find ways of expressing them and identify solutions to help overcome any difficulties you have. If you are finding it difficult to cope, it is particularly important to find some support for yourself before the situation reaches crisis point. Many younger people with Parkinson’s are able to cope more easily with the practical day-to-day issues, having found ways of managing the emotional effects that the diagnosis has had on them. If you are the partner, relative, or friend of someone with Parkinson’s, you may need support too. Who you talk to depends on your personal circumstances, the difficulties you have, and who you feel most comfortable with. This may be a partner, relative or friend. You may find it helpful to talk to other people with Parkinson’s. This is one of the main functions of Parkinsons NZ support groups. Parkinsons NZ’s divisions throughout the country run regular support group meetings and educational seminars. UPBEAT is a special interest group specifically for people diagnosed with Parkinson’s before age 60. They have a quarterly newsletter, occasional meetings throughout the country and a bulletin board on the Parkinsons NZ website. There are also other websites with e-mail facilities where younger people can share their experiences. This can be useful if you do not want face-to-face contact, but still need support.

My support, initially and enduringly, came from my wife Ngaire. My four children, young adults who are very much self focused and making their way in the world, took the news that I had Parkinson’s in their stride – almost as though I has just caught a cold. This hurts a bit but I guess that’s their way of dealing with the situation. I like getting together with the Upbeat group but find that getting together with non-Parkies does more for my spirit and optimism.

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Anybody, Any Age | A G U I D E F O R P E O P L E W I T H Y O U N G - O N S E T P A R K I N S O N ’ S

20 There are also many professionals who can provide

It is important to obtain as much information about

help. These include Parkinsons NZ Field Officers, GPs,

Parkinson’s as possible to ensure that your expectations

counsellors, and psychologists. If you are looking for

are as realistic as possible. It is also important to

help with practical problems, then professionals such

discuss these with your partner, family, friends and the

as occupational therapists, physiotherapists and speech

professionals involved in your care.

and language therapists can offer support. See chapter 3 ‘Staying independent and taking control’ for more information on their roles and how to access them.

changing relationships/ family dynamics Changes to relationships are common when someone has Parkinson’s and can occur at any stage of the condition. These changes may affect relationships with partners, siblings, children, or friends.

reaction to diagnosis As stated above, reactions to diagnosis vary a great deal. For some people, having a name for what they have comes as a relief. They may have been unwell for several years and are relieved to know, finally, what the problem is. Others will be devastated. Individual expectations of the condition are just as varied. Some people are very fearful and assume that they will become very disabled very quickly; others expect only minimal effects. The person with Parkinson’s and their partner/family may have different expectations, and this can lead to conflict.


Anybody, Any Age | A G U I D E F O R P E O P L E W I T H Y O U N G - O N S E T P A R K I N S O N ’ S

5 Related symptoms 21


Anybody, Any Age | A G U I D E F O R P E O P L E W I T H Y O U N G - O N S E T P A R K I N S O N ’ S

22 People with Parkinson’s disease may also experience a

Some people also find that they can learn to combat

variety of other symptoms which can be managed with

anxiety through learning psychological techniques

care and some techniques.

such as cognitive behavioural therapy and relaxation methods.

communication Parkinson’s can affect all types of communication

social isolation

– verbal, written, facial expression and body language.

Feelings of loss of social standing within the family

These can have an enormous effect on relationships, for

group and work place can lead to a reduced sense of

example loss of facial expression can be misinterpreted

self-worth and reluctance to socialise, particularly if

as disinterest or depression. Parkinsons NZ suggest

younger people feel their symptoms stand out and are

that anyone with communication difficulties contact

embarrassed by them.

a speech and language therapist for further advice

It is important to try to maintain existing relationships.

and support or ask someone to contact the therapist

You could make new friends by joining a social club or

for them. See chapter 3, ‘Staying independent and taking

sports group. If you would like to meet other younger

control’ for more details.

people with Parkinson’s ask your Field Officer about our UPBEAT group. Field Officers are happy to educate

anxiety

family members, friends and employers.

Anxiety can be a common symptom of Parkinson’s. People can find themselves becoming worried by

depression

things that wouldn’t previously have upset them.

Depression is very common in Parkinson’s, and can be

Some anxiety may be a reaction to the challenges

a problem for people who are newly diagnosed and still

of living with Parkinson’s for example, someone who

coming to terms with the condition. It is estimated that

trips on the stairs once may become anxious when

as many as half of people with Parkinson’s may suffer

faced with steps for fear of tripping again. This can

from depression at some point during their illness.

become a real problem if they then start avoiding

The good news is that depression, once recognised,

stairs. Panic symptoms can also be a problem,

can usually be treated quite effectively by counselling,

especially during times when movements are very

medication, or both. Talk to your GP, psychologist or

difficult, perhaps related to medication wearing

counsellor about options for dealing with depression.

off. Like depression, anxiety can be allayed by medications and/or counselling.


real lives Anybody, Any Age | A G U I D E F O R P E O P L E W I T H Y O U N G - O N S E T P A R K I N S O N ’ S

Graham, diagnosed aged 51

fatigue Physical and mental fatigue can also be common in Parkinson’s and can occur at any time. Many activities which were previously automatic now require conscious effort, and so after feeling quite fit and able one day, people can feel too tired to do much the following day. Fluctuations in a person’s mobility can occur throughout the day and are often related to the timing and dosage of medication. A person may feel more energetic and able to handle certain tasks at specific times of the day. Fatigue may also mimic apathy. Talk to your GP or neurologist about ways to combat fatigue.

apathy There is a growing recognition that people with Parkinson’s can experience apathy with or without depression. Apathy is a state characterised by a loss of motivation, loss of interest, and loss of effortful behaviour. Apathy can create a neutral mood and a sense of indifference to consequences. It is important that family members of a person with Parkinson’s who is experiencing apathy understand that it is a characteristic of the condition and not someone being lazy or difficult. There are a number of techniques that can be learnt for helping deal with apathy including making agreements e.g. we will go for a walk everyday at 9am. Please talk to your GP, psychologist and/or your specialist if you are experiencing apathy.

On bad days I tend to play a lot of rock and roll and jazz, as loud as I can without upsetting people. I force myself to get out of bed, have a shower and get dressed. I work out a menu for a good evening meal, do any necessary shopping and start preparing it early, so if I’m having a slow day with not much movement, I can still finish in time.

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mood swings Mood swings can occur as a result of fluctuations in dopamine levels within the brain and may be linked to the timing of drugs. Changes in mood can be very dramatic – when the medication is working, the person can feel relaxed and positive about their situation. When the medication is not working, feelings of anxiety and pessimism can dominate.

coping with these changes Talking it through honestly with your partner, family or friends without trying to apportion blame is very important. Work together to express your feelings and try to find solutions together that everyone is happy with. A degree of flexibility and compromise on all parts may be necessary. You may also need to decide on your priorities and change activities that are not so important so you can concentrate your energies on the ones that you most value. If you are finding it difficult to resolve issues, seek outside help. Professionals, such as occupational therapists, Parkinsons NZ Field Officers, counsellors, and psychologists may be able to offer support and advice. Talking to other young people who have experienced similar problems may also be very helpful. Parkinsons NZ has more detailed information available on these topics.


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Barbara, whose husband Mark was diagnosed aged 45 As a partner to someone who has Parkinson’s it has changed how we thought we would spend our retirement years together. It has also meant making adjustments to our current situation although we do our best to continue with our lives as normally as possible. I personally find it helps to take time out to do my art and crafts.

changing roles within a relationship When someone has Parkinson’s there may be changes in relationships and roles within partnerships or families, with people taking on different responsibilities or even reversing their roles. For example your partner may have to take over tasks like doing the garden or taking the children to sports. These periods of change can be difficult for all concerned. Partners and family members can feel pressured by these changes, and the person with Parkinson’s can miss roles they had or feel that they no longer have a role. This can lead to feelings of hostility, resentment, guilt, loss, and powerlessness within the relationship. Parkinson’s does not just affect the person with Parkinson’s. If you are a partner, a family member, or friend, you will live with Parkinson’s too. How you are affected will depend on many individual circumstances, including the type of relationship you have with that person. Sometimes the term ‘carer’ is used to describe someone who is providing support to a person due to the effects of a condition, illness or disability. Some people do not like this term to describe the support they give. Being a carer can mean different things; this may range from providing emotional support, to more practical help and personal care.


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27 It is quite normal for a carer to feel many of the same

Advice from other carers

feelings already mentioned as being common for the person with Parkinson’s. These may include difficulty

ACCEPT YOUR FEELINGS AND TALK ABOUT WHAT

accepting the diagnosis, fear about the future, anxiety,

YOU ARE DOING

depression, fatigue and confusion about the change

Talking about how you feel and what you are doing will

in your role in your relationship. It is common to

make things easier. Talk to the person with Parkinson’s,

experience guilt as you can feel that you should be

but also to others, such as family, friends and other

supporting the person with Parkinson’s rather than

people in a similar situation. You may also want to

worrying about how the condition will change your

consider talking to your Parkinsons NZ Field Officer,

life. It can be particularly difficult when you and the

a counsellor or GP.

person with Parkinson’s are at different stages in coming to terms with the diagnosis. You may wish to

MAKE IT CLEAR WHAT YOU WOULD LIKE TO DO

face any difficulties and gather all the information

Make it clear what you are and are not willing to do.

you need to help you get on with life, while they could

This prevents unrealistic expectations and resentment

still be in denial about the diagnosis. This can lead to

building up.

feelings of helplessness and frustration with the person you support.

ENCOURAGE INDEPENDENCE Try not to take over, and offer support rather than

Alternatively, they may be the one looking for

inundating people with advice and practical help.

information while you feel unready, leaving you feeling overwhelmed and guilty.

DIVISION OF LABOUR Sometimes roles within the relationship may need to

Whatever support you provide, you should try to

be adapted but work can still be shared, so that neither

consider your own needs and make sure you have

person carries all the responsibility.

appropriate support. LOOK AFTER YOURSELF AND KEEP TIME FOR YOURSELF Make sure you do not neglect your own health. Do accept support from other people. Try to keep your social life as normal as possible, and do the things you enjoy doing. Do plan breaks and holidays and take time out for yourself.


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Anna, whose mother Akke was diagnosed in her early 40’s GET SUPPORT BEFORE DIFFICULTIES ARISE AND

My Mum was diagnosed with PD from before I can remember, so it was kind of “normal” to me as a school age child. Probably a sign of the times - but we never really spoke about it at home and by the time I was a teenager and needed more answers my Mum’s speech was quite affected. Consequently I grew up not really knowing my Mum and sadly she passed away when I was 22 and living overseas. So, my advice to parents with PD (including myself!), is to talk about it with your kids, be open and encourage questions. But not focus on it – don’t let the PD define you. Hopefully they grow up knowing they have fun, real parents.

REACH CRISIS POINT There are a number of professionals who can support you including counsellors, your GP and your Parkinsons NZ Field Officer. It is better to seek their advice to know what help they can provide, even if you feel at that moment in time that you do not need it. PLAN THINGS TOGETHER Try not to let Parkinson’s dominate everything. Try to keep doing the things you enjoy doing, even if this means doing them differently. TRY TO KEEP YOUR SENSE OF HUMOUR Many people say that keeping their sense of humour has helped enormously, and keeps things in perspective.

children and young people providing support Sometimes, children can also become involved in supporting their parent with Parkinson’s, either on their own or along with other members of the family. Children involved in this way may be called ‘young carers’. Although many children may not be directly involved in providing help, the effects of having a parent with Parkinson’s may mean that they need support.


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29 Within the community, there are a number of professionals who could offer you support and advice. These include your child’s school or Parkinson’s NZ Field Officer, or organisations such as Carers NZ who are working to provide resources for young carers, visit www.carersnz.org.nz


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Intimacy


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Fran, diagnosed aged 47 Yikes!, how does one feel sexy and attractive when I’m stumbling ‘round the room with my end-ofthe-day uneven gait, or losing my balance when I’m stepping out of my jeans!!!! Or fighting the blanket to allow me to roll over! Not a good look. But what can a girl do…. You just have to laugh it off and KNOW that you are special. So he can feel my tremor through the bed…. Is that Parkinson’s or is it quivering with anticipation. If we can’t change the situation, then we can change the thinking.

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 than the main causes of problems in the sex lives of people with Parkinson’s are the same as those that affect the general population. Tiredness, stress, financial worries, concerns about the future, worries about self image, lack of communication affects us all and can impact on our sex lives. There may also be new issues arising in long-standing relationships especially as the disease progresses and one partner

Self esteem is important, and you have to believe that you’re still sexy and attractive. So I take a little extra time to make sure I look the best I can, (including what I wear during the day, and always what I wear next to my skin ~ if you know what I mean!!)), a little extra pampering so that I feel the best that I can. Okay, so I have some bodily impairments, but I’ll do everything that I can to be the best with the rest of me. It’s extremely wonderful that my husband tells me special things like: you’re looking pretty attractive, or he thinks I’m sexy. Does wonders for a girl’s self confidence.

takes on a caring role for the other. However, other causes are more directly related to Parkinson’s, notably difficulties with movement and fatigue. The types of problems that people can experience include: a lack of interest in and desire for sex; lack of arousal; and difficulties with the act itself, including achieving orgasm. A few people experience an increased desire for sex (because of taking levodopa) but this is rare. Surveys have shown that problems are more likely when it is the man who has Parkinson’s. Parkinson’s disease may have a direct, adverse effect on erectile function in some men. People can be reluctant to talk about their sex life with their doctor but it is an important subject that can make a significant difference to your quality of life. Erectile dysfunction may be treated by specific medications or may be remedied by adjustments to the anti-Parkinson’s medications.


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should problems occur

single people

As with the general population, the most important

Some of the most likely causes of problems affecting

point is to talk about any problems, as soon as they

sex lives are common to everyone, not just those

emerge. Communication of feelings, especially any

with Parkinson’s. Everyone has some concerns about

worries or concerns, is vital to any good relationship. For

themselves that may impact on their sex lives.

some people, better communication may be all that’s needed to resolve their problems. However, it is vital to

What you tell prospective sexual partners, and when,

communicate early and not allow things to deteriorate.

depends entirely on what you feel is right for you. However, going on what others have said, honesty

Others may experience physical problems. There are

seems to be the best policy.

a number of ways to tackle these, including taking different approaches to sex, such as having sex at

part of life

different times of day, or trying different positions, or

Above all, communicate. Your approach to sex may

perhaps taking a different attitude as to who initiates

be slightly different with Parkinson’s, but Parkinson’s

sex and how. All such approaches can help significantly.

itself should not stand in the way of an enjoyable and fulfilling sex life.

If talking together and new approaches don’t work then there are further options. Your GP is a good place to turn for help initially. He/she should be able to refer you to another source of help such as sexual and relationship counselling or psychotherapy. This can be difficult, but try not to be embarrassed; these professionals are used to dealing with such concerns. You won’t be the first to ask! Remember sexual problems can arise completely independently of Parkinson’s disease. Ageing, menopause and other illnesses such as cardiovascular disease or prostate problems can all impact on sexual interest and activity. Check with your doctor if there are ongoing problems that need to be investigated.


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Catherine, whose dad Ian was diagnosed aged 44 I was about 14 years old when my parents sat me down and told me that Dad had been diagnosed with Parkinson’s Disease. My first thoughts were… but he looks ok, and didn’t all Dads snooze on the sofa in the evenings? I remember not understanding what Parkinson’s was, it isn’t until someone you know has it that you begin to learn and hear about it. I recall not ‘wanting to’ and not knowing ‘what to’ tell friends at school. I also wondered about Mum and how she would cope as Dad deteriorated over the years - dare I say it? But I also feared that he may die earlier in life with having this disease. I remember feeling sad for Dad that he had such a bad card dealt to him, he didn’t deserve this, and angry that my intelligent, well respected Father, who had a good job, had got this horrible disease and why was it not someone else who had less to give? Dad was only early 40’s, how would he spend his days now? It wasn’t fair (still isn’t). I also had concerns about how Mum and Dad would be financially in later years with Dad’s illness forcing him to take early retirement. My Dad amazes me how he keeps as positive as he does. I still hope that a clever scientist will come up with a cure.

talking to your children about Parkinson’s Many people with young-onset 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. After diagnosis, one of the main concerns for younger people with Parkinson’s is what they are going to tell their children. It can be difficult to decide whether or not to tell children about the illness and if you decide to, how much to tell them. SOME POINTS TO REMEMBER: Q the

condition should not be hidden from children,

as they may worry more about what they don’t know than what they do, and reach their own conclusions Q the explanation should be simple and age appropriate Q children

need to feel they have some control about

how much and when they receive information Q children

need to be reassured that it is extremely

unlikely that they will develop Parkinson’s Q be

realistic with them.


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Fran, diagnosed aged 47

becoming parents 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, many men with Parkinson’s have fathered children since being diagnosed with Parkinson’s. WHAT ABOUT THE EFFECTS OF PARKINSON’S AND THE DRUGS USED TO TREAT IT ON PREGNANCY IN SOMEONE WITH PARKINSON’S? There are few reports available regarding the safety of Parkinson’s drugs in pregnancy. Research has not shown significant harmful effects of most Parkinson’s medications (levodopa and dopamine agonists), despite their ability to cross the placenta. Amantadine and selegiline, however, are quite toxic. Little is known about how pregnancy affects the symptoms of women with Parkinson’s. Breast-feeding is another area where little is known. Each case needs to be considered on an individual basis by the person with Parkinson’s and their medical team. Parkinsons NZ has some information on pregnancy in Parkinson’s which we can send to anyone with an interest in this area. If you are pregnant, or considering having a child, Parkinsons NZ may be able to put you in contact with other women who have had children since being diagnosed with Parkinson’s.

I told my daughter first, she was 24 and living at home for a while. She sat on my bed and said well what is it? The reality struck me, so I said well actually it’s an incurable progressive brain disease. Then we held each other and helped each other to cry. She’s so positive, she said “you’ll be alright mum, you have awesome people looking out for you.” And she’s right. Next I told my son, 21 at the time; I had to tell him over the phone as I didn’t want him to find out second-hand. When he came round to visit he said “I haven’t got anyone to talk to about you”, so I told him we could talk all he liked… but instead we held each other and helped each other to cry. Tears are very healing.

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Nicole, diagnosed aged 26 I had given up on the idea of having children, after being diagnosed at 26 but at 30 years old I gave birth by C-section to a very healthy little boy. The last part of the pregnancy my PD hardly affected me. But you need more rest and lots of support being a mum and when dressing and changing my son it took a little longer. Sometimes others wanted to do it for me, but he was a good baby, you soon work out what works best for you and your child. Being a single mum and having Parkinson’s is hard but I would not change having my son.

one parent households Being a one parent household can be a challenge at the best of times, but with Parkinson’s it can be a real test. However, many people manage this situation well.


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9 Employment & finances 37


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employment - what about work?

Many people will be in full or part-time employment when they are diagnosed and will want to continue to

For many people work is not just about making a

work as long as possible. Your ability to stay in work

living. Your work forms a big part of your life and can

once diagnosed with Parkinson’s depends very much on

be fulfilling and enjoyable, as well as providing social

the type of work you do and how your symptoms affect

interaction. For many younger people with Parkinson’s,

you. It is very important that you obtain information

their condition does not stop them working. However,

about continuing in your employment and consider

at a later stage, you may want to make some changes

your options carefully before making any decisions.

that will make working easier for you, or you may want to take a different approach to work. If, in the future,

You may need to realistically evaluate your working

you feel you may have to stop working, you are likely

future. Ask yourself some tough questions, such as:

to need to consider a number of issues.

Can I do the job safely? Will it pose a risk to others? Will it worsen my symptoms? Every case is individual.

COMMONLY ASKED QUESTIONS ABOUT WORK ARE:

A good starting point is to talk openly and honestly with

Q I

your employer and your specialist.

have been diagnosed with Parkinson’s. Can I carry

on working? Q My

employer says that I am no longer able to do my

some answers

job because of the Parkinson’s. Are they right? Q Can

my company change my contract?

Q What

help is around to support me to stay in

employment? Q Can

I claim benefits and still work?

IF I AM DIAGNOSED WITH A LONG TERM ILLNESS - DO I HAVE TO TELL MY EMPLOYER? There isn’t a yes/no answer to this question – it depends on the circumstances of each case. Generally you would

Q What

can I claim if I have to finish work?

not be obliged to disclose this information unless you

Q What

happens to my pension?

think it will impact on your ability to perform your

do I pay my mortgage if I cannot work

work. Your employer may need to know of a long-

Q How

any longer? Q Can

my partner claim any benefits if I stop work?

Q What

about if I want to do some work and I am

on benefit? Q Can

I work when I am taking drugs?

term illness to help them fulfil their health and safety obligations towards you as an employee. The Employment Relations Act 2000 requires employers and employees to deal with each other in good faith, which means dealing with each other honestly and fairly, and with open communication.


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Mark, diagnosed aged 45 IF MY EMPLOYER SAYS I AM NO LONGER ABLE TO DO MY JOB BECAUSE OF MY ILLNESS WHAT RIGHTS DO I HAVE? Under the Human Rights Act, it is unlawful to discriminate on the grounds of disability in employment. If a person requires special services or facilities because of their illness, their employer may decline to provide them only if it is not reasonable to provide them. This means employers need to consider whether they can reasonably accommodate a person’s illness within their workplace before considering any other action. Reasonable accommodations could include modifying your current job as appropriate, or finding you a more suitable job within the organisation (under your existing terms and conditions of work). CAN MY COMPANY CHANGE MY CONTRACT? Your company cannot change your contract without your agreement.

I am fortunate to have worked with my current employer for many years and they have been very supportive of my condition. My workload has been adjusted and I am able to work from home one day per week. The changes have helped me with the adjustments I have had to make. It has been quite difficult for me to adjust to not being able to produce and cope with the amount of work that I have previously. This is an ongoing personal challenge that I still deal with.

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Kevin, whose wife Sandy was diagnosed aged 42 Financially things have been challenging. When it became clear I would need to stop work also we approached WINZ and at the time were given very helpful advice. We started on a disability allowance which the person we dealt with helped us maximise. We had been receiving some home help from ACC. WINZ assisted until we were eligible for a community services card when the Health system took over. Currently we receive a care package from Supportlinks. WINZ provides us with about half an Invalids Benefit. We are fortunate to be mortgage free.

current legislation/ dismissal Current legislation states that when dismissing an employee for problems related to persistent or prolonged illness, the employer must follow a process that is fair to the employee and it will depend entirely on the circumstances. The law does not require that an employer must hold open the employment of a sick employee indefinitely. However, as with other types of dismissal, the decision to terminate must be fair and reasonable, that is, the employer should be able to justify their reason to dismiss this employee. What will constitute a fair procedure will depend on the circumstances of the particular case, but an important part of this process (amongst other things) is the need to communicate clearly with the employee who is ill and let them know a reasonable time in advance (usually determined by the employer and dependant on the circumstances) that their employment may be in jeopardy. If an employee is dismissed for illness-related problems and the reason or process followed for the dismissal is not fair and reasonable, the employee can challenge the dismissal by raising a personal grievance. For further information on your employment rights contact the Department of Labour or your union/employee representative.


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real lives disability benefits

Jeanette, whose husband Malcolm was diagnosed aged 40

You may find that you need to change the number of hours you are working and are eligible for income support. For information on income support contact your local Work and Income office or visit their website at www.workandincome.govt.nz. Some of the support you may be entitled to includes disability allowance, special benefits top-up and invalid’s benefit. If you are not sure, ask your case manager. If you are not confident, take a friend that can ask the tough questions to ensure that you are getting what you are entitled to.

We did not qualify to receive any benefits from the government - we are one of the many that fall through the gaps. Fortunately we still have one income at present, but this could change at any time.

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Kevin, whose wife Sandy was diagnosed aged 42 We did have private health insurance when we were both in full-time work but when my wife had to stop work and I became part-time we found it prohibitively expensive. Although we started with a private neurologist I was able to get Sandy in to a Wellington Hospital neurologist.

how might parkinson’s affect me financially? FINANCES Many people find it extremely useful to spend time with a financial advisor (often a free service). Working out your current and potential future financial situation is important.

The public system can be slow and frustrating at times but generally has been helpful to us. You need to be your own advocate and be prepared to question opinions.

COMMON ISSUES Common issues faced by people diagnosed with Parkinson’s include health care costs, insurance, employment, disability benefits and legal matters. Your ability to handle legal and financial problems will be greatly improved if you have a good working relationship with your doctors and health care professionals, as they will be able to manage much of your ongoing medical care and be better able to assess your employment capabilities. These issues are substantial and very much depend on your own circumstances, so below we have outlined pointers which may help you to take steps to lessen their impact. HEALTH CARE COSTS Public health care – as a New Zealand Citizen you are entitled to receive health care from the public system, and depending on your financial circumstances, you may qualify for subsidised GP visits and drugs.


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43 The Ministry of Health website www.moh.govt.nz outlines who is eligible for health care services in the Health and Disability System section. If you want to know more about applying for a Community Services Card free phone 0800 999 000, or ask at your nearest Work and Income centre. INSURANCE - you may already have an existing private health insurance policy, life insurance policy or salary protection policy - you should protect whatever level of care you already have while also investigating other options. Ensure you read the ďŹ ne print on the policies. EMPLOYMENT Please see above. DISABILITY BENEFITS Please see above LEGAL MATTERS You may want to deal with these matters through your solicitor; they can assist in helping you establish an Enduring Power of Attorney, a Family Trust and other legal details. Public Trust may also be able to help, free phone 0800 371 471.


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10 Living on your own

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Lynn, diagnosed aged 49 Many people make a personal choice to live on their own, and with support, this does not have to change with Parkinson’s.

practical issues PHYSICAL DIFFICULTIES

It is very easy when you’re on your own to get frustrated with yourself when things go wrong, or you can’t do what you used to be able to do. Often I get bloody minded. After having difficulty getting on a downward escalator I went back to town the next day and practised on an escalator I used often until I could do it without hesitating.

There may be physical issues, which can often be overcome or made easier and safer through the supply of equipment or through adapting tasks in some way. Occupational therapists can advise on the appropriate-

If common sense tells me not to climb a ladder when I’m on my own I’ll try to be sensible and nab my first visitor to change the light bulb.

ness of equipment, and what may be available, and also about how to keep as independent as possible. FINANCES Living alone can be difficult financially, whether you are working or not. If you are working you still need to be aware of any benefits that may be available to you if you live alone. Contact your nearest Work and Income office to ensure that you know about all the benefits you are entitled to. EMOTIONAL ISSUES Physical issues are more visible, and sometimes easier to come to terms with than emotional ones. For some people who live alone, isolation, loneliness and depression can prove difficult to manage. Depression is very common, affecting many people with Parkinson’s. This issue is discussed in chapter 4 of this booklet.

What I find most difficult to cope with is the assumption that everyone has a live in carer. It is important to have outlets - a diary, a sense of humour, a network of supporters who are able to listen and to encourage. Find the techniques that work for you. Above all be positive.

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where to get support Q make

the most of your existing support:

your family and friends Q Parkinsons Q UPBEAT

NZ free phone 0800 463 473

support group for people with young-onset

Parkinson’s, free phone 0800 463 473 Q Parkinsons

NZ Field Officers

QGP Q counselling Q internet

services

support sites, including the Parkinsons NZ

site www.parkinsons.org.nz Q find

out about events/activities and support locally

through the library, the internet, local papers or Citizen Advice Bureaux. There are advantages of living on your own, including the fact that it forces you to keep active, be independent, and make more of an effort to go out and do things. You do not have to worry about being responsible for another person, and are your own free agent.


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11 Life & leisure 47


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Peter, diagnosed aged 49 We sold our farm two years ago and moved to town on a farmlet. I belong to a walking group and have just returned from five weeks in the UK. I also try to go fishing every so often although putting bait on to the hook can be a challenge with my tremor.

Below are some tips on lifestyle issues. As has already been said, no two people’s experience of Parkinson’s will be the same, and what works for one person may not work for another. Finding out what works for you may be a case of trial and error, and may also have to be adapted as situations change.

Driving Many people with Parkinson’s continue to drive for many years after diagnosis and it is unlikely that you will be prevented from driving in the early stages of Parkinson’s. However, you are required to disclose any known medical conditions to Land Transport NZ upon renewal of your licence or when a medical condition you have has affected your ability to drive within the last five years. If you hold commercial classes of licence, you should discuss this with your GP, as the standard for holding these classes is higher than driving private class vehicles. You may be required to present a medical certificate stating that you are safe to drive or explaining the conditions under which you can drive. This certificate can be obtained from your GP (ask for a Land Transport NZ medical certificate). You should make your GP aware if you hold commercial class licences or endorsements.


real lives Anybody, Any Age | A G U I D E F O R P E O P L E W I T H Y O U N G - O N S E T P A R K I N S O N ’ S

Ian, diagnosed aged 44 It is important to be aware of the effect your condition may have on your ability to drive safely. If you are in any doubt about your ability to drive, you should discuss this further with your GP. Sometimes adaptations can be made to cars to make it easier for people with disabilities to drive. Your occupational therapist may be able to advise you. You may also want to get professional assistance from a driving assessment service. This service can test your driving ability on the road, give advice on any adaptations you may need to drive safely and evaluate your muscle strength and range of movement, contact Enable New Zealand (free phone 0800 171 981) for your closest assessment centre. If you are taking medication, or your medication changes, get professional medical advice to ensure that your driving isn’t affected. It is also important to inform your insurance company of any change in your health that might affect your ability to drive.

It seems to me that one of the important things is to take something and do it extra well – be it making raspberry jam, playing table tennis, working with silk flowers or whatever. You’ve got to do something that restores your self confidence.

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socialising and leisure activities

SIMILARLY, DON’T USE PARKINSON’S AS AN EXCUSE NOT TO DO THINGS, TRY TO THINK POSITIVELY AND

Your social life does not have to dramatically change,

CONSIDER YOUR PRIORITIES

but you may need to think ahead a bit more.

Decide what the most important things in your life are

Think about what may help you to be able to manage

and concentrate your energies on these. This may mean

the situation better, such as:

you have to give up certain less important things or get

Q taking

your medication on time

help to do them, so that you can concentrate on what

Q would

a rest before you go out/have friends

you most want to do.

to visit help? Q how

are you going to get home, particularly if you

are likely to feel very tried at the end of the event? Q what

impact will the event have on your body

LIVE ONE DAY AT A TIME Try not to be discouraged if Parkinson’s slows you down or makes certain routine activities more difficult. Keep

– try to think about similar events, and how you

active and work at your own pace. Plan activities in

felt afterwards. Are there things you could have

advance so there is no pressure to hurry.

done differently? Q pace

yourself

DON’T TRY TO COPE ON YOUR OWN

Q how

can you adapt activities to suit your needs?

There are many people who can support you, including Parkinsons NZ and its special interest group UPBEAT.

everyday tips from younger people

It is very important to keep up your contacts to avoid becoming isolated. Websites and local support groups can put you in touch with other people to share

DON’T LET PARKINSON’S STOP YOU DOING THE

experiences and information. This can be particularly

THINGS YOU WANT TO DO

important if you live on your own. Even if you’re not

Where there are problems, there are often solutions.

ready to meet people, talking to others in a similar

It may simply mean you have to do things in a different

situation through a chat room might help, or just

way. Occupational therapists in particular can advise on

keeping up in touch with Parkinson’s news and

making activities of daily living easier and suggest ways

developments may help you to feel less isolated.

of continuing with interests such as hobbies, sport, etc.


real lives Anybody, Any Age | A G U I D E F O R P E O P L E W I T H Y O U N G - O N S E T P A R K I N S O N ’ S

Fran, diagnosed aged 47 ACKNOWLEDGE AND ACCEPT YOUR FEELINGS Don’t be afraid to talk to someone if you think it would help. Make time to talk with your family and friends, to share concerns and vent emotions to prevent build-up of frustration and emotion. TRY TO KEEP YOUR SENSE OF HUMOUR So many young people with Parkinson’s say that their sense of humour is what keeps them going.

Parkinson’s has really forced me to another life choice – and that’s sticking to exercise. Apart from time-out over a back injury; I walk, I dance (belly dancing is good for flexibility training, muscle isolation and control, and looks pretty nice too). In the warm months I do aqua exercise in the pool as I haven’t regained my co-ordination for swimming properly yet. My Neurological Rehab Physio set me a programme for use with a swiss/gym ball and wobble board to increase flexibility, stability, balance etc. And always stretching, moving, extending, pushing the boundaries. ‘Brain Gym’ is another fun and helpful thing to do. As for my garden, well I know I have to make changes, so I plan to turn some of it in to a mini obstacle circuit with rocks to clamber over and logs to step over. Exercise, fun and simulated wilderness all in one. I feel fantastic and ALIVE when I’ve exercised; exhilarated, energised and in control of my life.

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12 Resources and support

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53 Parkinsons NZ provides education, information

www.parkinsons.org.nz

and support for people living with Parkinson’s,

Our website provides further information about

their families, carers, and health professionals.

Parkinson’s, local Field Officer contact details, back copies of publications, fact sheets on a variety of topics,

THE WORK OF PARKINSONS NZ INCLUDES: Q information

and our library list.

and advice on all aspects of Parkinson’s

including drug treatments, surgery, therapies, social

UPBEAT

and health care rights, benefits, driving, employment

Founded in 2000, UPBEAT is a special interest group

etc;

for people with young onset Parkinson’s (those

Q a

national network of divisions, Field Officers and

diagnosed under the age of 60). The group has a regular

support groups, offering local information, support,

newsletter, occasional local meetings and seminars,

advice, exercise classes and social activities;

and a chat room via the Parkinsons NZ website.

Q a

wide range of publications for people with

Parkinson’s, families and carers, including books for

MEMBERSHIP

loan from our library;

Anyone with an interest in Parkinson’s can become

Q lobbying

for a better quality of life for people living

with Parkinson’s.

a member of Parkinsons New Zealand. We have over 5,000 members and Parkinsons NZ is this country’s main source of information about the condition.

PUBLICATIONS

The more members we have the louder our voice is

Parkinsons NZ produces two quarterly publications

to campaign for a better quality of life for all those

for its members – The Parkinsonian and UPBEAT.

affected by the condition.

In addition we have booklets and pamphlets covering a wide range of Parkinson’s related issues.

As a member, you will also be first to access up-to-date information from our quarterly magazine

LIBRARY

The Parkinsonian. You will be entitled to join one of

The Parkinsons NZ library has numerous books that

20 local divisions which provide advice on Parkinson’s,

members of the Society can borrow for a period of

home visits, educational seminars, exercise classes,

three weeks. For a full library list contact Parkinsons NZ

support groups and social activities. For further

or visit our website.

information on topics relating to Parkinson’s, lending library, fact sheets and details of local support contact Parkinsons NZ.


Anybody, Any Age | A G U I D E F O R P E O P L E W I T H Y O U N G - O N S E T P A R K I N S O N ’ S

54 FIELD OFFICER SERVICE

Young Parkinson’s

Parkinsons NZ divisions throughout the country offer

www.youngparkinsons.com is the personal site of

a Field Officer service. Our Field Officers can provide

Tom Berdine, diagnosed at 33, includes a chat room,

advice on Parkinson’s, home visits, referrals to other

information on Parkinson’s and ask a pharmacist

community health professionals, exercise classes,

question facility.

support group meetings. To find out more about the Field Officer service in your area contact our National

www.young-parkinsons.org.uk is the personal site of

Office or visit our website.

Chris Chapman, diagnosed at 37, the website includes information on Parkinson’s, Chris’s story, his coping

CONTACT DETAILS

strategy and a list of resources.

Parkinsons New Zealand P O Box 10 392

useful contacts

Wellington Freephone 0800 473 463

CARERS

Phone 04 472 2796

Carers NZ

Fax 04 472 2162

This organisation provides information for carers

Email info@parkinsons.org.nz

including a resource library, calendar of carer support

Website www.parkinsons.org.nz

groups, and a database of support service available throughout NZ.

overseas resources for young-onset Parkinson’s

www.carers.net.nz or phone 09 406 0412. Caring for Carers

YAPWEB (Young Parkinson’s Network)

A Christchurch based support group for carers. Their

www.yab-web.net is the UK Parkinson’s Disease Society’s

website includes a calendar of support group meetings,

website for young-onset people, includes chat room,

newsletters and fact sheets.

magazine articles and news on Parkinson’s.

www.caringforcarers.org.nz or phone 03 377 8426.

YOPA (Young Onset Parkinson’s Association) www.yopa.org is an American website for people with young-onset Parkinson’s, includes a chat room, message board, information on Parkinson’s and newsletters.


Anybody, Any Age | A G U I D E F O R P E O P L E W I T H Y O U N G - O N S E T P A R K I N S O N ’ S

55 COUNSELLORS/CLINICAL PSYCHOLOGISTS

MAORI HEALTH PROVIDERS

Ask your GP about counselling or clinical psychology

Ministry of Health website www.moh.govt.nz lists

services available in your area. Some local voluntary

Maori health providers in your area.

organisations offer counselling services for free or for a small charge.

PUBLIC TRUST For help with legal matters visit www.publictrust.co.nz,

DEPARTMENT OF LABOUR

or free phone 0800 371 471.

If you have employment issues or questions the Department of Labour is a good place to start.

RELATIONSHIPS

www.dol.govt.nz

Relationship Services provides relationship counselling for individuals and couples. The website lists local

DISABILITY SERVICES

contacts or check in your telephone book.

Weka – what everybody keeps asking about disability

www.relate.org.nz

information is New Zealand’s disability information web site, for people with disabilities, their families, whanau

WORK AND INCOME (FORMERLY WINZ)

and caregivers, health professionals and disability

The website www.workandincome.govt.nz details what

information providers. The site contains information

benefits you may be entitled to, try your local office,

about living with a disability, such as advocacy, law and

or free phone 0800 559 009. Always remember to ask

standards, financial issues, employment, equipment,

what else may be available for you.

housing and transport. www.weka.net.nz or free phone 0800 17 1981.

YOUR GP Your GP will be able to put you in touch with or refer

Enable New Zealand is a multi-service organisation

you, whether you are a younger person with Parkinson’s,

working to assist disabled people and their families/

a partner or child of someone with Parkinson’s, for

whanau/hapu, employers, health professionals and

appropriate support.

disability support organisations. www.enable.co.nz or free phone 0800 362 253.


Anybody, Any Age | A G U I D E F O R P E O P L E W I T H Y O U N G - O N S E T P A R K I N S O N ’ S

Thanks

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Anybody, Any Age | A G U I D E F O R P E O P L E W I T H Y O U N G - O N S E T P A R K I N S O N ’ S

57 Parkinsons New Zealand is extremely grateful to

Anybody, Any Age is based on 1 in 20,

all those people with young-onset Parkinson’s and

a Parkinson’s Disease Society UK publication.

their families who have contributed to this booklet, particularly our case studies, including:

Parkinsons New Zealand wishes to thank

Diana Adlam, Fran Allcock, Pippa Carvel,

the following for their generous support of this book:

Jeanette Clark, Malcolm Clark, Barbara Collis,

Q Gibson

Mark Collis, Bruce Cutfield, David de Barr, Gary Hattie,

Q Glaxo

Peter Jones, Nicole Macconaghie, Catherine McLeod,

Q Pub

Rusden, www.gibsonrusden.com

SmithKline

Charity

Ian McLeod, Scott Masters, Kevin Miles, Lynn Pollock, John Riley, Graham Rose, Anna Scott-Smith, Craig Stein, John Walker and Sandy Wright.

© Parkinsons New Zealand Published October 2006

Parkinsons New Zealand also wish to thank our Medical Advisory Panel and the health professionals who generously contributed to the booklet, including: Tim Anderson, Stephen Chalcroft, Alison Charleston, Matthew Croucher, Lindsay Haas, Kathy Jenkins, Lorraine MacDonald, Jon Simcock, Lorraine Singh and Barry Snow. Parkinsons New Zealand would also like to thank the staff who contributed to this booklet, including: Phillipa Arapoff, Kay Beck, Ally Clelland, Tricia Hastings, Pauline Hikairo, Julie Jones, Susie Jones, Deirdre O’Sullivan, Megan Scott, Liffet Stewart and Janet Wills.


Anybody, Any Age | A G U I D E F O R P E O P L E W I T H Y O U N G - O N S E T P A R K I N S O N ’ S

Notes

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Anybody, Any Age | A G U I D E F O R P E O P L E W I T H Y O U N G - O N S E T P A R K I N S O N ’ S

Notes 59


Anybody, Any Age | A G U I D E F O R P E O P L E W I T H Y O U N G - O N S E T P A R K I N S O N ’ S

Notes

60


Inside cover - UPBEAT members participating in Outward Bound activities in the Marlborough Sounds.


This booklet has been written for people

Parkinsons New Zealand

diagnosed with Parkinson’s in their 20’s, 30’s, 40’s

P O Box 10 392

and 50’s. We also hope that all New Zealanders

Wellington

living with and affected by Parkinson’s will find

Freephone 0800 473 463

this booklet a useful resource.

Phone 04 472 2796 Fax 04 472 2162

I’ve been diagnosed for two years now, and at times still find it hard to accept I have a degenerative disease, and on a bad day will feel sad that many of the more physical goals I had for the future are probably not achievable. But ultimately you have to incorporate it as part of yourself and move on. As they say – as one door closes, so another opens. You can only live each day; Parkinson’s has certainly taught me patience! Anna, diagnosed aged 36

Email info@parkinsons.org.nz Website www.parkinsons.org.nz

The health system is geared to assist older people with Parkinson’s. Young people with Parkinson’s are not provided for in the same way and have to be proactive in a lot of situations to obtain results. Craig, diagnosed aged 36

Published October 2006 © Parkinsons New Zealand ISBN 10: 0-473-11680-4 ISBN 13: 978-0-473-11680-4

Anybody, Any Age - a guide for people with young-onset Parkinson's  
Anybody, Any Age - a guide for people with young-onset Parkinson's  

A guide for people who are diagnosed with Parkinson’s before aged 60.

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