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Contents welcome
campaign news
Welcome 2 an update on campaign and parliamentary work

Conservative Government would ensure the state

PDS makes an impact at the matches financial contributions made by individuals.

out now party conferences

The PDS made a real impact at this year’s party
conferences. During the conference season, the
This policy announcement resulted in the fringe event
being featured in The Guardian.

On the main platform at the Labour conference, a key

PDS priority – specialist nurses – gained a political boost.
PDS Policy & Campaigns team met with around 20 Health Secretary Alan Johnson renewed his commitment
parliamentarians from all political parties, including to specialist nurses in his conference address.
Shake Well The Complete those working on their party’s manifestos.

life as a
The PDS is now working closely with the MPs and Peers
Before Use Carer’s Guide
The meetings resulted in pledges of support on key we met and will be encouraging them to use every

About the PDS 3 by Tom Isaacs

Taken from the instructions on a

by Bridget McCall Parkinson’s issues and will strengthen our opportunities
to influence government on issues such as access to
“If you provide practical and emotional
opportunity in Parliament to discuss the needs of people
with Parkinson’s.

carton of orange juice, the book’s
title not only sets the tone for the
narrative but succinctly captures
Tom’s capacity to laugh at himself and at his Parkinson’s,
drawing humour from misery, light from dark if you will.
Not surprisingly there are shaking jokes aplenty.
The book is relentlessly upbeat. Many of us with
Parkinson’s feel diminished by our illness, at least partly
resigned to lives less wonderful than they might otherwise
have been. Not so Tom Isaacs, by his own admission
an incurable optimist. Despite being diagnosed at 27,
this is a man somehow defined, elevated even, by his
research and
grandparent
deep brain stimulation in Wales, raising standards in
support to a relative or friend who
care homes and the availability of specialist nurses.
needs help because they are ill, aged
or disabled, then you are aWe will be working to make sure these pledges are
carer
turned into
and this book is for you” – so starts the introduction to actions.
this book, which aims to provide a practical Atguide
the to
three conferences, the PDS was a member of the
the main issues which commonly affect carers and to In the last issue, we heard from Joan Williams who wrote about her feelings
Health Hotel – a collaboration of over 30 health-related
highlight useful resources. This it achieves with clarity.
It is indeed a complete guide.
organisations. We joined forces with Help the Aged, Long about becoming a grandparent for the first time. Many of you were inspired to
Term Conditions Alliance, Alzheimer’s Society and Help
the Hospices
The book does not set out to tell you how to care, but how to stage fringe events. The events, ‘New
share your experiences of this special relationship…
to access the support and help required to ensure
needs of the carer, as well as those of the patient,
the
Demographics,
challenges
New Health Service’, focused on the
are met.for the NHS in caring for an ageing population
and asked delegates whether their party’s policies will
Topics range from ‘Finances’ to ‘Caring at a distance’
As Lois Wyse said: “If I had known how wonderful it
would be to have grandchildren, I’d have had them
born to my two daughters in 1999, 2002, 2003 and
2004, arrived when they did so that I could spend

Spotlight on
Parkinson’s. Isaacs is not just fighting his condition but
determined to give it a good hiding.

We often think of Parkinson’s as a journey and this book

describes several journeys. On one level, it is a very real
development meet the needs of older people.
and include areas such as ‘Emotional, psychological
and spiritual impact’ and ‘Stopping caring’, subjects
At the Labour event, Health Minister Ivan Lewis
which are often overlooked in the desire to fiunderlined
nd practicalthe Government’s commitment to a more
solutions to caring. Each topic is dealt with in a separate
a roundup of news and developments in Parkinson’s research personalised health service, which values the quality of
first.” I was diagnosed with Parkinson’s seven years
ago, and recently became a grandfather. I find it very
motivating, not least because it is good to know
that I have a useful role to play in looking after our
quality time with them before I become too debilitated.

My youngest daughter has two boys; nine and five,

and my eldest daughter has two girls; six and three.
They are growing up knowing that nan has Parkinson’s
chapter and includes relevant personal experiences granddaughter, despite my Parkinson’s.
and courageous journey, all 4,500 miles of it, on foot, the overall patient experience. He also mentioned the and, as far as they are concerned, I have always been
of carers, which I found very helpful and enlightening.
raising £400,000 for the Parkinson’s Disease Society. need to tackle issues relating to skills and the turnover of There are also direct benefits. For example, my wife slow and can’t do lots of things other people take for
Subjects covered are well indexedusefor easysystems
reference.
Pesticides and
In another sense, it is an inner journey of understanding,
model to gain a greater understanding of the
care staff. Geraldine Peacock, former Head of the Charity and I get exercise doing the hokey-cokey to entertain granted. Mostly they accept my limitations but, like me,

occupational therapy
6
mechanisms by which pesticides may influence nerve cell
of coming to terms with a chronic and still incurable Reading this book, one feels that here is an author who
Commission, who has Parkinson’s, also spoke about her her, and doing that for five minutes would exhaust sometimes they get frustrated with me when I am slow
death in Parkinson’s. In particular, it will attempt to mimic
Parkinson’s disease
parenting
illness. Finally, it is the journey of relationships – with really understands the needs of carers, and has been
own able
experiences of living with the condition. even an able-bodied person! or can’t help them. We overcome my problems together
the doses of the chemicals that people would be expected
beloved parents (his helplessness at his father’s death to draw on years of experience to present the information in and laugh at the way Parkinson’s affects me, i.e. when I
to be exposedAttothe and will monitor their
Conservative event,long-term
Shadoweffects.
Health Minister Although I can’t always hold her, it is very satisfying
is especially moving), and with a Research
special woman who one small volume. The style of writing is readable and jargon jerk suddenly for instance and it makes them jump! They
has indicated that the incidence of Stephen O’Brien committed his party to reforming to get a smile or other reaction from her, and she even
can see through the shakes to the person within. free, with technical terminology defi ned andfurther
However, explained.
studies are required in order to identify Health Minister Ivan Lewis underlines the Government’s commitment to a have learnt from a very young age to be considerate,
Parkinson’s disease is slightly higher in people the way long-term care is paid for, indicating that any more personalised health service appreciates my singing, unlike everyone else. Having
the specific chemicals involved. To date, there is no caring and compassionate, which I think are endearing

news
The book is inspiring and has somewhowonderful If you are caring
reported exposure to pesticides. This for a family member
follows or friend with a granddaughter has also encouraged us to take up a
qualities that I hope they will retain forever.
descriptive passages, especially aoflarge-scale
the unspoiltstudy Parkinson’s
to examine
Scottish possible any other chronicevidence
(orlinks thatthis
condition), fruitbook
or vegetables
will that have been exposed
A diagnosis
new hobby – we bought a digital camcorder to keep of
a Parkinson’s can cause anxiety and uncertainty about the
between
coast. Best of all, the book introduces chronic,
us to low-dosebe
a fabulous
a welcome
exposure
to pesticides
6 are associated
and invaluable addition to your bookshelf.
to pesticides
with an increased
www.parkinsons.org.uk risk
Parkinson’s. It is still uncertain what causes Parkinson’s
of
pds helpline: 0808 800 0303 enquiries@parkinsons.org.uk record of her growing up. Jayne Baxter, Grantham
future, especially if it comes early in life and you are raising a family.
and Parkinson’s,
supporting cast – you can’t help but warm to Wild at the Harvard School of Public
Unfortunately, the information about Enduring
disease and it isPower of many factors may play a role.
likely that Steve Evans, by email Social worker Sarah ********************************************************************
Barter looks at the issues and the help that may
Rover, Mr Beef and all the many Health (HSPH).
others who share this Attorney (on page 44) is out of date,
Someaspeople
Lasting mayPower
have a genetic susceptibility to the
marvellous trip. And you wouldn’tThe
want to miss Eric 140,000 of Attorney superseded
over EPA in October
be available to you.
******************************************************************** Before any of my three children were married, I
study included people, monitored condition,2007.
which, when combined with other developed Parkinson’s. When one of my daughters
the Psychotic Pheasant now would you? period, and determined the risk of developing Bill. So a big thanks to all Imembers who contributed
was diagnosed with Parkinson’s on 6 March 2002 aged
a 14-year
the condition over this time. Because
environmental
Reviewed by Jenny Harland, whose husband agents
has (such as pesticides), may make
the study involved a these people more likely to develop Parkinson’s.
PDS celebrates research to this campaign! 47. Once I got over the initial shock, it took me a long
told me she was pregnant I was thrilled, but as time
Reviewed by Jon Stamford Parkinson’s went on I developed very negative attitudes to the
large cross-section of the community, the link to the effect
Source: Ascherio A, Chen H, Weisskopf MG, et al. Pesticide exposure
Bill campaign success time to learn to pace myself and I found it very hard to
If you wrote to your MP on this issue but have not Talking it through coming birth. My concerns were that Research
I would hasnotshown
be that children are sometimes
RRP £16.99 To order, please call
of020 7929 7656
pesticides RRP £7.99
across the population ISBN
is made 978-0-85969-995-2
more clearly. come to terms with not being able to do things as quickly

Interview with
and risk for Parkinson’s disease. Annals of Neurology. 26 June 2006. yet let us know, please call 020 7932 1325 or email able to play the full role of a grandmother,embarrassed to talk to their friends about Parkinson’s, or feel
to baby-sit,
Previous studies have been mainly carried out in rural Following a sustained campaign by the PDS, alongside as I used to be able to. I soon decided that I needed
Talking about an illness istonever an baby
easy or pleasant
campaigns@parkinsons.org.uk. This will help us to lift the safely embarrassed
and all the other if their parent has obvious symptoms. However,
things which
areas,pds
whichhelpline:
has made0808
it difficult to be positive and ‘keep smiling’ became my motto. I
30 www.parkinsons.org.uk 800to 0303
discount enquiries@parkinsons.org.uk
other other research and patient organisations, the future of monitor the success of our campaign. experience and talking toI your
would children
dearlyabout
love to your these
do. It got to the fearsthat
stage are often
I overcome with time. If your child is at
factors which may have influenced the development an important new area of stem cell research has been christened the Parkinson’s ‘My lodger’ownand mycan
health left be
hand even harder. Children will instead
know that
dreaded the birth, of beingschool
thankfulor college,
that I it may be helpful to talk to a teacher or
of Parkinson’s. ‘Frank’ (because my left side is affected and, when it is
something is wrong and was it is important
secured. In June, MPs voted in favour of proposals in going to to be honest
share with
in something lecturer
so about what
wonderful. Whenis happening to ensure that extra support
bad, my movements are jerky like Frankenstein!).
them once a diagnosis isJoshua definite,was
rather thannothing
waitinghad
for prepared
While the HSPH study provided information about the the Human Fertilisation and Embryology Bill allowing born, and reassurance
me for the can be made available to your child.
scientists to continue developing techniques using a ‘right time’
It is hard at times, but I think fate intervened in to
mytelllife
them.feeling of such joy when I visited my daughter and she
incidence of Parkinson’s in a specific population, the

Sharon Goodyer 8 environmental agency, DEFRA, has announced the funding

of a three-year study, at a cost of over £900,000, that will
mixed human/animal eggs.

This research holds significant potential for scientists

to gain a greater understanding of Parkinson’s, and
ultimately to develop more effective treatments. The Bill
18
and truly believe that my four beautiful

www.parkinsons.org.uk Parkinson’s
grandchildren,
Children

PDS Fellowship awards
The PDS has started a new grants-awarding scheme,
known as Career Development Awards, as part of its
continuing commitment to increase the number of
people involved in Parkinson’s research.
The purpose of this new scheme is to support individuals
who wish to specialise in Parkinson’s research, either through
a career development award know as the Senior Research
Fellowship, designed for those wishing to establish their own
is a crucial
pds helpline: 0808 influence
got me to sit in a chair and gave Joshua to me to nurse.
can feel excluded and isolated unless they are
included in discussions. Their access to information about
on how enquiries@parkinsons.org.uk
800 0303 they cope with
news of a parent’s illness. If children have a name for the
Help for you
If your symptoms become worse, it is useful to know what
support may be available to both you and your child from
the statutory agencies. It is the duty of adults’ services
updates existing laws, bringing research involving mixed illness, it can reduce the fear and anxiety and make the
those undertaking relevant research training. The awards
are advertised once a year. Of the 10 applications human/animal embryos under the same rigorous ethical condition seem less frightening. departments within social services to support disabled
and regulatory framework that already exists for human
received this year, the following were approved for funding parents in their parenting role. Under the auspices of the
The Parkinson’s Disease Society (PDS) produces a leaflet Community Care Act 1990, a person who is experiencing
at the July meeting of the PDS Board of Trustees: embryonic research.
and books that are specifically for children and young problems with meeting their own personal care needs must
• Understanding some of the mental health Over the last 18 months, the campaign has involved people. The Society also provides advice for both parents
complications seen in people with Parkinson’s – lobbying Government ministers and parliamentarians, and children on talking about Parkinson’s
Dr Iracema Leroi, University of Manchester £238,768
securing influence through the media, submitting and the main symptoms and effects. Giving
over 36 months. evidence to two Parliamentary committees and children information and time to prepare for the
• Understanding how unconscious learning happenscontributing
and to the Human Fertilisation and Embryology future and what is happening now can reduce
determining whether it can be altered – Dr LeonoraAuthority’s own consultation on this issue. anxiety and stress.
Wilkinson, Institute of Neurology, London £103,366 over

Gambling 10
PDS members also played an important role in this It is important to reassure your child that
research group, or a Training Fellowship, which is aimed at 24 months.
success by writing to their local MPs, urging them to Parkinson’s is not contagious and that you
support this important area of research in votes on the PDS staff and supporters make their voices heard at Westminster do not have it because of something that
8 you or your child did. If you feel that
you do not have enough information
about Parkinson’s, the PDS produces
Support the Parkinson’s Disease Society’s research

Illustration by Rosalind Richards

a wealth of resources and publications.
programme by taking ‘The next step’ The DVD Being There is available for the
newly diagnosed and provides information
To help raise vital funds for research into Parkinson’s, we have set up ‘The next step’, an initiative and advice on Parkinson’s and its
that enables people to donate money directly to our research programme. symptoms.

By agreeing to make either a monthly or annual gift, you’ll be playing a vital role in driving our
research forward so that we can continue to make crucial breakthroughs. 22
You can download a Direct Debit form at www.parkinsons.org.uk or call 0845 434 8883.

Health and wellbeing 12 05/06/2007 15:23:02

Welcome to this taster issue of The Parkinson, the Parkinson’s

My favourite things 14
Disease Society’s (PDS) membership magazine. We hope you enjoy
reading it and will be joining as a member, which will entitle you to four
Join us! 15 issues a year – jam-packed with news and advice, and stories
and letters from other people affected by Parkinson’s.
Each issue features the latest news on research taking place
all around the world, as well as PDS-funded studies, and on
campaigns to improve Parkinson’s services and influence policy
makers in England, Northern Ireland, Scotland and Wales.

We take a look at the issues that affect people living with Parkinson’s,
with expert advice on coping with the emotional, as well as the
physical effects the condition can have on people’s lives. We
hear from people who have been living with Parkinson’s for some time
and others who have been recently diagnosed, sharing
the highs
© Parkinson’s Disease Society
and lows and tips for getting the most out of life.
of the United Kingdom, 2008
Charity registered in England and Wales The Parkinson is a great way to connect with other people
No. 258197 and in Scotland No. SCO37554.
affected by Parkinson’s and share experiences. If you’d like
A company limited by guarantee,
Registered No. 948776 (London) to join us and receive this quarterly magazine – and enjoy the other
Registered Office 215 Vauxhall
Bridge Road, London SW1V 1EJ benefits that being a member of the PDS has to offer – please call
Tel 020 7931 8080
Fax 020 7233 9908
0844 225 3790 or turn to the back page for more information.
PDS Helpline (free) 0808 800 0303
email enquiries@parkinsons.org.uk
website www.parkinsons.org.uk We look forward to welcoming you!
 about the PDS
Research
The PDS is a world leader in Parkinson’s research. Every year, thanks to our
supporters, we invest millions of pounds in research into the cause, prevention
and cure of Parkinson’s – as well as looking at ways to improve treatments and
the lives of those with the condition.

Advice and information

We provide information on all aspects of Parkinson’s, including drug treatments,
therapies, rights and benefits. We have a confidential freephone Helpline, a range of
information resources and regional teams to provide support and advice, wherever
you live in the UK. You can also visit our website at www.parkinsons.org.uk

Driving change
The PDS works hard to influence decision makers at government and local levels
to ensure that policies and services reflect the needs of people affected by
Parkinson’s. We also provide education to health and social care professionals
to increase their understanding of this complex condition.

Local support
The PDS’s branches and support groups are at the heart of the Society’s work.
There are now more than 330 groups, set up and run by volunteers to provide
mutual support and friendship for people affected by Parkinson’s
throughout the UK.

Funded entirely by voluntary donations

You can help us support more people and find a cure for Parkinson’s by making a
donation, leaving a gift to the Society in your will, organising your own fundraising
event or taking part in local fundraising activities. For more information, call
020 7931 8080.

The Society’s mission is the conquest of Parkinson’s disease and the alleviation of the 3
distress it causes, through research, education, welfare and communication.
 spotlight on
occupational therapy
Each day, people take part in a wide variety of tasks, activities, and family,
work and leisure roles. Occupational therapy (OT) seeks to reduce the
impact of health problems on day-to-day life by helping people to remain
independent, maintain their interests and adapt to changes in their abilities.

OT and Parkinson’s What happens when someone is

For people with Parkinson’s, simple tasks and daily
activities that could be done automatically before can
become slower and more difficult to carry out. OT (also
short for ‘occupational therapist’) can help improve the
effectiveness of carrying out everyday tasks that are
generally taken for granted, but may have become
more awkward because of having Parkinson’s.
OT aims to help you to overcome the effects of your
symptoms in your day-to-day life. It can help you
continue to keep in control of tasks such as fastening
buttons and dealing with clothing, as well as eating and
drinking. It can also help people cope better with work
and leisure activities, including handwriting, managing
paperwork and organising familiar routines. In addition,
OT can help if problems occur with walking, especially
in busy places, or with getting in and out of bed, moving
in bed, using steps and stairs, and maintaining balance.
OT in the home
OTs can advise about minor home adaptations, where
needed, such as the installation of grab rails and hand rails
by steps and stairs. An OT may also be able to organise
the supply of some basic items of equipment on free loan
(for example, to help you get in and out of bed). Some
OTs (usually those based in the social services section of
the local council), can advise about more expensive home
adaptations, such as stair lifts, or accessible bathroom
facilities, like the installation of a level floor shower.
referred to an OT?
During the first meeting, an OT will collect details of
the person’s home circumstances, family roles and
responsibilities, and the types of day-to-day activities
that they need and want to do. This is usually done by
talking to the person with Parkinson’s and, if agreed by
them, with family or friends. The OT may ask to observe
performance of actions causing difficulties and will also
consider the impact of other health issues if Parkinson’s
is not the only problem.
The OT will be aiming to assess and identify the
person’s main priorities for improvements and find out
where difficulties occur. Then, in collaboration with the
person who is being assessed, an individually tailored
action plan will be devised, including goals to be
addressed over a course of one or more sessions.
Sometimes, OT services are delivered to people in their
own homes. In other areas of the UK, appointments to see
an OT may be available at a local hospital or healthcare
clinic. For people with long-term conditions such as
Parkinson’s, a comprehensive OT service could include a
course of rehabilitation sessions and, if needed, assistance
in selecting and organising home adaptations.
The main ways an OT can help
Solving problems – working together to find easier
ways of doing particular tasks. Sometimes, an OT may

4 www.parkinsons.org.uk PDS Helpline: 0808 800 0303 enquiries@parkinsons.org.uk

 spotlight on occupational therapy
teach how a different method can be used to help
someone do a difficult task more easily. Advice about
using gadgets, equipment and new technologies may
be given where suitable. Suggestions may sometimes
be made about practical changes, such as re-organising
the furniture at home to allow easier movement around
an awkward area. In other situations, an OT may advise
about using a suitable service or other form of support.
Equipment, such as reclining chairs, should not be
purchased without the advice of an OT, even if the person
selling the equipment claims to have knowledge of the
needs of people with Parkinson’s. The PDS has heard from
many people who have spent a lot of money on unsuitable
equipment/furniture.
Independent information and advice is also available
from the Disabled Living Foundation. To find out more,
visit www.dlf.org.uk or call 0845 130 9177.
Providing information and support – OTs can help people
to make choices, by providing information and explanations
about the various resources, services and benefits that are
available to help maintain family life, and work and leisure
interests. Advice can be given about issues such as driving
and accessing other forms of transport, or how to get
practical assistance to allow someone to continue to meet
work or family commitments.
Other information provided may include details of how
to get help when using trains and airports, or how to
apply for a Blue Badge parking permit. OTs can also
advise on coping strategies to help with Parkinson’s
symptoms such as fatigue, handwriting changes and
communication difficulties.
How do I find an OT?
To request an OT service, you may contact your local
social services directly, who will then arrange for an
OT to visit you at home. Alternatively, you can ask your
Parkinson’s specialist or GP to refer you.
Referral should be to an OT with knowledge of
Parkinson’s, if one is available. Where referral is made to
a general, non-specialist OT, it is helpful to ensure that
they are aware of the less evident Parkinson’s symptoms,
such as tiring quickly with activity, balance problems,
and the tendency for symptoms and abilities to fluctuate
during the course of the day.
Advice and intervention provided by NHS health and
social services OTs in the UK is free of charge, as is
a range of basic items of equipment and some minor
home adaptations to aid independence and safety.
However, major home adaptations like the installation
of a level floor shower etc, are subject to means testing.
Written by Ana Aragon, who is an OT with a special
interest in Parkinson’s with over 11 years experience
of working with people living with the condition.
Taken from the summer 2008 issue of The Parkinson
 interview with:
sharon goodyer
Looking at Sharon Goodyer, you’d probably describe
her as a youthful 56 – stylish, eloquent and successful
– so why do people sometimes mistake her for a 90
year old on the phone? “My voice went completely,”
Sharon explains. “I woke up with no voice at all – there
was nothing.” But that hasn’t stopped Sharon from
building a business that is growing in size and public
recognition by the week.
Sharon was diagnosed with Parkinson’s seven years
ago. At the time, she was dedicating all of her energy
to single-handedly raising her two teenage children
while inspiring pupils at the secondary school where
she taught. Teaching was a source of great fulfilment
to Sharon: “It never, ever occurred to me that I
wouldn’t be doing that until well into my sixties,”
she reminisces.
On discovering a tremor in her left arm, she decided to
ignore it, assuming it would go away over time. As the
months went by, Sharon consulted her GP, who assured
her it was her nerves and prescribed valium. But Sharon
had a feeling there was more to it than that. Almost
two years after she had noticed her first symptom, a
neurologist gave her the diagnosis that she had always
expected in her “heart of hearts”.
Sharon’s thoughts immediately ran to her children and
whether to share the news she had received. Fearing it
would affect their relationship, she kept it to herself for
six months. But then the time came to speak to them.
Sharon decided not give the condition a name … but it
was soon obvious that she didn’t need to: “They both
immediately hit the internet and came back and said
‘we think you’ve got Parkinson’s disease’. You can’t
protect your children from anything nowadays as they
look it up straight away,” she laughs. Sharon has no
regrets about speaking to her children when she did:
“They are stunning,” she asserts proudly.
 interview with: sharon goodyer
Also standing by her at this time was her new partner, Martin. Sharon is full
of admiration for his unflinching support: “It was very brave of him. It was
a very new relationship and he could have quite easily have walked away
and he chose not to”. Little did Sharon know back then that he was soon
to become her partner in business as well as life.

In the early days, Sharon continued to teach, though this was becoming
more and more difficult. As of the beginning of 2000, her voice had been
affected so she could speak in little more than a whisper, and she was
also starting to have problems with her balance. Considering, as well,
how worn out she felt from her tremor, Sharon decided, with regret, that
teaching was no longer going to be possible.

After leaving the world of education behind, Sharon turned her hand to baking
cakes and bread, alongside her daughter Catherine, for the market stall
that Martin was running at the time. And it wasn’t long before they started
to realise the potential in their business: “We knew there was a gap in the
market for a really good value, old fashioned sponge cake that was revamped
for today’s tastes”. So with this mission in mind, they set about perfecting
a recipe, and with great success … in the space of two years, Sharon had
gone from baking in her home kitchen to setting up The Cake Bake Company,
which now supplies cake to stores and supermarkets across the country.

“
I’ve still got loads to offer but I can’t offer it

”
in someone else’s structure. I have to be able to
control it myself.
Helping to run a successful business not only provides Sharon with the
intellectual challenge she relishes but also enables her to take things at her
own pace – Sharon can take a break or even go home if she is finding things
difficult. And there are other advantages: “When you’ve got Parkinson’s, you
sometimes wake up in the middle of the night and when you’re awake, you’re
awake. You can lie there and fret or, when the factory is running 24 hours, I can
get up and come to work”. She is grateful to all her colleagues for accepting
her idiosyncrasies and not making a fuss: “The team supports me – they just
take me for who I am. The only demands are the ones I put on myself”.

A few months ago, things became even more exciting at The Cake Bake
Company when they received a phone call asking if they could bake giant sponge
cakes for a new Skoda advert. Everyone rose to the challenge to produce most
of the food that was used to make a 100% edible car. So this is where we leave
Sharon’s journey, as her company and determination continue to grow and grow.

To find out more about the making of the Skoda advert, visit
www.thecakebakecompany.co.uk

Taken from the autumn 2007 issue of The Parkinson

www.parkinsons.org.uk PDS Helpline: 0808 800 0303 enquiries@parkinsons.org.uk 7

 gambling
Obsessive gambling is a rare but potentially destructive side effect of
some Parkinson’s medications. We look at the cause, related symptoms
and what can be done to help.

Drug treatments and gambling How does this happen?

Pathological gambling is defined as a failure to resist
gambling impulses despite severe personal or family
consequences. With the advent of e-gambling, wagers
or bets can now be placed from a computer without
leaving the home, often with disastrous consequences.
Dopamine, as well as helping to regulate movement,
balance and walking, also plays a central role in the
behavioural reward system. This includes the ‘thrill’ of
gambling behaviour, which can result in this relatively
rare disorder.

It is thought that ICD can affect people

there may be a “I am a gambling victim of dopamine agonist on dopamine agonist
connection between therapy, and there is
medication. From being a trusted wife
some Parkinson’s evidence that suggests
medications and an and mother, I became addicted to internet that treatment with
increase in gambling gambling and ran up large debts on credit other anti-Parkinson’s
and/or other forms of cards and loans. It was so easy to get credit. drugs, including
compulsive behaviour. monoamine oxidase
However, scientific “My medication has now been changed but B inhibitors, may
studies have shown I still have a lot of accrued debt to deal with. also result in the
this to be a relatively development of the
This has affected my relationship with my
rare side effect and it is disorder.
important to note that whole family and I cannot see me being free
of this millstone for many years to come.” ICD is most likely
compulsive gambling
to occur in people
appears to be
diagnosed with
reversible if the drug is
Parkinson’s under the age of 50. It is also thought
removed or changed.
that there are additional factors that influence whether
While initial studies suggested that 4% of people with someone will go on to develop behavioural problems
Parkinson’s will develop impulse control disorder (ICD) – people who have had a history of problems such
during the course of their treatment, it is thought that the as alcohol or drug dependence, prior to starting their
number of those affected has been underestimated. Parkinson’s treatment, will be more susceptible to ICD.
This is likely to be a result of people being reluctant to
discuss it with their consultant. Indeed, many may not even
realise that there is a connection between changes in their
Is gambling the only symptom?
behaviour and their medication. Also, because gambling People with ICD may show an increase in spending,
has become more accessible than before, there may be alcohol consumption or compulsive eating. There
more people affected by compulsive gambling than has can be an overlap with other obsessive-compulsive
been suggested in the published research studies. disorders and an increase in risk-taking behaviour

8 www.parkinsons.org.uk PDS Helpline: 0808 800 0303 enquiries@parkinsons.org.uk


and/or gambling. A person with ICD may also
experience hypersexuality. Abnormal behaviour
usually occurs in the ‘on’ phase of Parkinson’s.
What can be done to help?
It is important to realise that this behaviour is abnormal
and a person experiencing it should seek help from a
Parkinson’s nurse, neurologist or hospital physician. If
your next appointment is some months away, ask for
it to be brought forward. This can be done by either
contacting a Parkinson’s nurse or a GP.
Treatment strategies can involve reducing the daily dose
of Parkinson’s medication, undertaking psychotherapy
and also considering whether other types of medication
should be introduced. When left unchecked, this condition
can lead to a great deal of misery in terms of financial
and relationship problems. Therefore, as with all side
effects, it is vital to seek help as soon as possible. If you
do experience any side effects you should discuss them
immediately with your doctor or a Parkinson’s nurse.
If you have accrued unmanageable debts through
gambling, contact National Debtline, a national
telephone helpline for people with debt problems in
England, Wales and Scotland. The service is free,
confidential and independent. National Debtline can
discuss your debt problems and the options available
to you. The specialist advice that they give over
the telephone is backed up with written self-help
materials that they can send out to you for free. If your
circumstances meet certain criteria, they can, if you are
interested, assist in setting up a Debt Management Plan
for you, free of charge. The helpline number is
gambling
0808 808 4000 or, for more information, visit
www.nationaldebtline.co.uk
The PDS takes the link between gambling and
Parkinson’s medication very seriously and works hard
to raise the issue among healthcare professionals. An
article on the subject, written by Dr Kieran Breen, Director
of Research and Development at the PDS and Mel
Phillips, Helpline Nurse, was featured in the professional
publication Geriatric Medicine (this can also be found in
the Professionals section on our website). The more
aware healthcare professionals are of the problem, the
more they will be able to educate people with Parkinson’s
and their families of the potential effects, recognise changes
in behaviour and treat the problem effectively.
The Society, through consultation with members about
important areas of research, has identified ICD as a key
area for future studies. In particular, we want to identify
more accurately who may be susceptible to developing
ICD and how it can be treated. Therefore, the PDS’s
Research & Development Directorate is currently
working closely with a group of researchers to develop
such a study, which will increase our understanding of
the problem and how best to address it.
The PDS Helpline receives regular enquires from
people with Parkinson’s who are concerned about their
medication. We would urge anyone who is anxious
about their medication or its side effects to speak to
a doctor or a Parkinson’s nurse as soon as possible,
or call the PDS Helpline on 0808 800 0303.
The PDS information sheet Gambling and Parkinson’s
(code FS84) is available at the PDS website and to
order from Sharward Services.
Taken from the autumn 2007 issue
of The Parkinson
 health and wellbeing
Handwriting
By physiotherapist
Bhanu Ramaswamy
As Parkinson’s disease
affects activities dependent
on control and co-ordination
of movement, problems with
handwriting often occur.
Being able to write is important, not only from the
general ability to make lists, take notes, correspond
etc, but, legally, problems can arise from alterations
in handwriting.
you get to the end of the line, and the pace at which
words can be put down on paper is slowed. As the
Parkinson’s progresses, you might find that your hand
also shakes too much to hold a pen and write clearly.
The script is often described as spidery or more of a
scrawl in character, and is noted to slope more than
normal. Writing ability has been recorded as getting worse:
• when medication is running, or has run, low
• when there are no helpful markers on a page, such as
lines, to act as a visual guide
• at times when concentration has lapsed, for example
when someone is in a rush or doing more than one
thing at a time

A person’s signature is likely to alter as they age, • when there is a lot to write and the hand tires
but, with Parkinson’s, your writing can differ
not only over a period of time, but possibly
also during the course of a day. This creates
difficulties with legal documentation, such
as signing a letter or cheque. It has been
known for a Will and Testament signed by a
person with Parkinson’s to be contested on
the grounds that the signature is different
from an earlier specimen signature. In
one research trial comparing almost 200
handwriting specimens of Parkinson patients
and age-matched controls, the findings
indicated that some of the handwriting
changes resembled forgery.

With Parkinson’s, your writing usually

becomes smaller in size – known as
micrographia (see example, right). This is
thought to happen as a result of combined
wrist muscle stiffness (rigidity) and
decreased movement range (amplitude) at
the wrist. As a result, although the letters
may be of normal size at the start of a
sentence, your hand will become less and
less free to write with its normal flourish as Example of handwriting affected by Parkinson’s – actual size

10 www.parkinsons.org.uk PDS Helpline: 0808 800 0303 enquiries@parkinsons.org.uk


For those with micrographia, being on medication is likely
to improve the size of the letters. In those who notice that
it takes longer to write, but whose writing size remains the
same, medication may help to speed the process of writing.
Nowadays, word processors or dictaphones can be
useful ways of messaging without the need to write.
If you do want to write though, as with other movement
problems, there are some things that can be done to
improve the quality of your writing.
• Try and sit at a well-lit, stable surface so you are in a
good position to write.
• You need to pay attention and concentrate on what
you are writing, so, if necessary, move away from
distractions or switch off the TV or radio.
• If you are not keen to use lined paper, then place a thick
lined sheet behind a plain piece, so the lines can act as
a visual guide to keep your words straight on the paper.
A new path
Denise Robertson,
author and adviser,
thinks about life’s
twists and turns.
When we’re young, the future
seems to stretch smoothly
ahead. If we work hard, play
by the rules and do no harm, life will be rosy. As for
illness or disability, that happens in other peoples’
lives, not ours. Sadly that perfect scenario only fits
one in a million. Most of us find our road full of twists
and turns with the odd roadblock thrown in for good
measure.
When this occurs, it can feel like the end of the world.
In fact, those twists, those roadblocks, can be a
chance to pause and get our breath. Illness or injury
is one such twist and a prime example of what can
come from it is Simon Weston, horrifically injured
when Sir Galahad was hit by an Argentine missile
www.parkinsons.org.uk PDS Helpline: 0808 800 0303
health and wellbeing
• Think ‘BIG’ as you write, and take time to form each
letter aiming to the line above each time the stroke of
a letter slants upwards.
• You can buy a pen grip, or wrap a thick rubber band
around the pen’s barrel, to make the pen thicker and
easier to hold.
• As soon as your writing starts to falter, stop and take
a deep breath to relax. Some find it helpful to stretch
their arms and fingers before they start again. If you are
writing a lot, you may need to do this several times.
You can always ask an occupational therapist for
more information. Also, see the PDS information sheet
Handwriting and Parkinson’s (code FS23) as it also
contains information and solutions about cheque writing,
and what you do if you can no longer sign your name.
Taken from the summer 2008 issue of The Parkinson
during the Falklands War. He had 49% burns, which
left physical and psychological scars.
He could have been forgiven for thinking, at the age of
21, that his life held nothing but existing on a meagre
pension and hiding his scarred face from the world.
Instead he has become a national hero, founding the
magnificent Weston Spirit, a charity that promotes the
personal and social development of socially excluded
and disaffected young people.
If he had not been caught up in the horror of war,
he would now be an ordinary guy, going out with
his mates on a Friday night, grumbling about the
Government and doing not much else. Misfortune
made him change tack and the result has been
glorious. So if life has presented you with a roadblock
lately, don’t try crashing through it. There is a way
round and if you search you’ll find it. No, you won’t be
able to do all the things you did. You may have to take
a different road to the one you intended but who is to
say it does not lead to a better destination?
Taken from the autumn 2007 issue of The Parkinson
enquiries@parkinsons.org.uk 11
 over to you
Speaking from experience
My sister sent me an email telling me that one of her
friends had just been diagnosed with Parkinson’s and
asked if there was any advice I could give her. This
was my reply:
I know this is devastating news but this is not the
end of you. If ever there was a good time to get
Parkinson’s, it is now when there is so much research
being done on trying to find a cure and to make the
drug treatment more effective. When I was diagnosed
20 years ago, the drugs and side effects caused me a
lot of problems and made me quite ill, but nowadays
they have been refined and are more user friendly.
Everyone has their own version of Parkinson’s and you
must not think that you will end up like someone you
meet who is in a bad way.
Try to find something positive to come out of this. If
you have to leave work, still keep busy. I know it may
seem easy for me to say, but you’ll get the strength to
cope. I don’t allow myself to think about the future in a
negative way – the main thing is that you are still here.
Find your talents and surprise yourself with what you
can do. Listen to your body – rest when you need
to and don’t feel guilty about not doing household
chores. Take your medication on time and keep a diary
of how you feel until you get established on a suitable
drug regime. Stress can affect your Parkinson’s and I
always feel worse if I get too hungry.
No one knows what the future holds but stay positive
and may your God go with you.
Carol Wilson, Washington, Tyne and Wear
Bags of ideas
My husband, who has had Parkinson’s for 27 years,
goes into respite care on a rolling programme. When
he comes home, I go through his bags, washing
12 www.parkinsons.org.uk PDS Helpline: 0808 800 0303
what’s necessary etc. Then I put everything back in,
leaving them open. I put the bags on a shelf in the
wardrobe. Next time respite comes along, I don’t
have to think about and sort what he’s taking in.
Yes, he does take and wear the same things, all
named of course. I have found this way very helpful.
Pauline Pye, Stoke on Trent
Swimming problem
I thought I would write to tell you about an experience
I had on holiday recently.
Before my diagnosis, I was a strong swimmer and,
naturally, I thought I still was. One afternoon, I was in
the pool, swimming towards the deep end when, to
my horror, I found I was swallowing a considerable
amount of water and found myself sinking. I required
the help of my friend to get me out of difficulty. This
is not something I have experienced before. I wonder
how many more people have been affected in the
same way.
Since then, I have discussed this with other sufferers
and they say the same thing: that they too have
completely lost their strength for swimming.
I feel this could be a warning to other sufferers.
David Lewis, Yeovil.
As the symptoms of Parkinson’s are very individual and
can fluctuate, it is important to put safety first, even if
you haven’t experienced any problems with swimming
previously. It is advisable to stay within your depth and to
swim in a supervised environment. If there is a lifeguard
on duty, it would be worth explaining your condition to
them so they can keep a watchful eye on you.
If you have any concerns, it is important to speak to
your GP or physiotherapist. The latter may recommend
hydrotherapy or local water exercise classes.
enquiries@parkinsons.org.uk

If you no longer feel confident in the water, there are lots
of other activities you could try on dry land. Local leisure
centres and gyms offer various activities and classes
that may interest you. Remember to speak to your GP
before participating in any new exercise regime.
Hap-pea meal
Many people with Parkinson’s may have difficulty picking
up peas from their plate. Try partially crushing cooked
frozen peas, either with a hand held blender or potato
masher. I add a little mint sauce for serving peas with
roast lamb – delicious. Broad beans and sweetcorn can
be treated in a similar way. So much easier to cope with.
Fay Bawtree, by email
Stepping out
When walking becomes difficult, I imagine a football
in front of my left foot. To consciously attempt to kick
the imaginary football really does help with my stride.
It makes my left foot want to come forward and take
a near-normal step.
Also, this is difficult to explain and sounds strange, but
if I say to myself “right, left, right, left” when actually
pacing with the left foot first, my walking is actually
better. I explained this to the neurologist and suggested
to him that it is a mental effort to confuse my brain
into thinking the opposite of what it is actually doing.
He was intrigued and said he might suggest it to other
patients to see if they found the same.
Paul Durrant, Utrecht, Netherlands
Change for the better
As a reader of The Parkinson for many years, I have
noted numerous complaints about treatment in
hospitals concerning the administration of medication
associated with Parkinson’s.
I have been in hospital several times and experienced
the frustration of not getting my medication on time.
However, when I was rushed to hospital in August,
www.parkinsons.org.uk PDS Helpline: 0808 800 0303
over to you
I was pleasantly surprised by the changes that had
taken place since my last illness.
I wrote a letter to publicly thank the hospital staff
for their care and their commitment to administering
my Parkinson’s medication on time. I should also
like to draw the attention of others with Parkinson’s
to the fact that situations can change for the better
with the help of Parkinson’s Disease Nurse
Specialists and a continuous request for your
medication on time.
Robert Arnold, East Cowes
It’s a really good idea to write to the hospital if you
have experienced positive changes in their medicines
management. Acknowledgement of their efforts and a thank
you can really motivate staff to keep up the good work.
We also encourage people to let us know about any
good practice they have encountered. If a hospital
has particularly good processes in place, or if staff
on a ward have in-depth knowledge of the condition,
we can contact the hospital to find out more about
their practices and share this information with other
hospitals. You can contact us by calling 020 7932 1325
or emailing campaigns@parkinsons.org.uk
Man’s best friend?
Each day, I try to walk around the block for exercise
– progress is slow. One day in particular, Sheila said
‘take the dog with you!’ I think the dog resented
moving from a warm and comfortable spot to come
out with me. We started off on our mission, going flat
out, doing at least ten regulation ‘Parky’ shuffles per
minute. I could feel the g-forces building up but it was
not good enough for the dog. Tess decided after a
few minutes trial that progress was too slow, so she
turned and went home!
I am now looking for a friendly tortoise who would like
a walking companion!
Barry Honey, Annan, Dumfriesshire
Taken from various issues of The Parkinson
enquiries@parkinsons.org.uk 13
 my favourite things
a PDS member reflects on life’s pleasures

Terry Kavanagh My favourite holiday

was diagnosed
with Parkinson’s
over twenty
years ago and
lives with his
wife, Jean, in
Romford, Essex.
Terry has run
18 marathons,
raising close
to £55,000.
My favourite food
I love to go out to eat but I do not know if the loss of
my sense of smell has caused me to get fed up when
I am eating. I prefer to eat bits and pieces – lots of
shellfish, prawns, crab and spicy food. I do have one
favourite – I have a recipe for barbecued leg of lamb,
which has to be prepared the day before. It is the only
thing I do in the kitchen, apart from beans on toast or
opening a tin of soup.
My favourite sight
That would be the roundabout outside Buckingham
Palace because as I pass it, I know the finish line will
be in sight and I will have finished another London
Marathon, that my family will be there and there will
be a shower, massage, food and a pint, and a great
reception at Strand Palace Hotel from my friends in
the PDS, and I can swap stories with the other runners.
My favourite people
My wife and my family who have helped make the
problems of Parkinson’s seem not too important
and help me to lead a relatively normal life by
encouragement and the occasional kick up the
backside when I need it.
Disneyland in America. My eldest son, his wife and
two young boys have taken me and my wife to
Orlando three times, where we really have a great
time. We go on all the rides, something I was not so
keen on when I was younger. I particularly like the
water parks and the big water chutes. We then enjoy
a quiet day and an early night so we are able to go to
another park the next day, with me trying to prove I
can still keep up by going on the biggest rides.
My favourite place for a visit
My parents, sister and partner, and their children and
grandchildren live in a small town in Hampshire and
I like to go there. It is very friendly and everybody
knows everybody else. I can unwind run round the
block if I feel like it, go to one of the many pubs in
the town and always see someone I know. I miss my
father who died last year. He was still full of life and
looked younger than me but a third operation on his
knee was one too many. It is very pleasant to feel at
home in more than one place.
My final thoughts (up to now)
Through Parkinson’s, I have met many extraordinary
people who have, because of their courage and amazing
cheerfulness, enriched my life by their example.
I often wonder what would have happened to me had I
not been diagnosed over twenty years ago. I was made
redundant three years after that, when I was nearly fifty,
and could not get back into the City. I always blamed
Parkinson’s for that, but was there another reason?
Was I meant to do something else? To run marathons
for Parkinson’s … to meet all those extraordinary
people … to be of some small help to a few … to show
people that life with Parkinson’s can still be lived? If
I only helped one person to come to terms with their
condition, I will have achieved something worthwhile.

Taken from the summer 2008 issue of The Parkinson

14 www.parkinsons.org.uk PDS Helpline: 0808 800 0303 enquiries@parkinsons.org.uk

Are you living with Please send me information
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