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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
grandparent
deep brain stimulation in Wales, raising standards in
carton of orange juice, the book’s support to a relative or friend who
care homes and the availability of specialist nurses.
title not only sets the tone for the needs help because they are ill, aged
narrative but succinctly captures 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.
Tom’s capacity to laugh at himself and at his Parkinson’s,
drawing humour from misery, light from dark if you will. this book, which aims to provide a practical Atguide
the to
three conferences, the PDS was a member of the
Not surprisingly there are shaking jokes aplenty. 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.
The book is relentlessly upbeat. Many of us with
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
Parkinson’s feel diminished by our illness, at least partly 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…
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
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.
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
www.parkinsons.org.uk Parkinson’s
grandchildren,
Children
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
PDS Fellowship awards 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
The PDS has started a new grants-awarding scheme, 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
known as Career Development Awards, as part of its • Understanding some of the mental health Over the last 18 months, the campaign has involved people. The Society also provides advice for both parents
continuing commitment to increase the number of complications seen in people with Parkinson’s – lobbying Government ministers and parliamentarians, and children on talking about Parkinson’s
people involved in Parkinson’s research. Dr Iracema Leroi, University of Manchester £238,768
securing influence through the media, submitting and the main symptoms and effects. Giving
The purpose of this new scheme is to support individuals over 36 months. evidence to two Parliamentary committees and children information and time to prepare for the
who wish to specialise in Parkinson’s research, either through • Understanding how unconscious learning happenscontributing
and to the Human Fertilisation and Embryology future and what is happening now can reduce
a career development award know as the Senior Research determining whether it can be altered – Dr LeonoraAuthority’s own consultation on this issue. anxiety and stress.
Fellowship, designed for those wishing to establish their own 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
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.
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.
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.
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.
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
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.
A new path during the Falklands War. He had 49% burns, which
left physical and psychological scars.
My husband, who has had Parkinson’s for 27 years, If you have any concerns, it is important to speak to
goes into respite care on a rolling programme. When your GP or physiotherapist. The latter may recommend
he comes home, I go through his bags, washing hydrotherapy or local water exercise classes.
Your support is crucial. Without our members, we Please also send me details on:
simply wouldn’t be able to offer such a wide range of
support and information.
Parkinson’s and the work of the PDS
People like you join the Parkinson’s Leaving a legacy to the PDS
Disease Society
Fundraising activities
Membership costs just £4 a year (£15 for
overseas). To request more information on
becoming a member of the Parkinson’s Disease If you do not wish to be contacted by post please tick this box
Society, please complete the form opposite If you do not wish to be contacted by telephone please
and return this to: tick this box
Freepost RLYJ-UJHU-EKHJ
Parkinson’s Disease Society
Slough SL3 0EN
Monday–Friday, 9.30am–9pm
Then why not join Saturday, 9.30am–5.30pm
(except Bank Holidays)
us as a member? email: enquiries@parkinsons.org.uk