|Frequently asked questions
- What patients and carers most often want to know
“As a lay person you
don’t always know if your question is a sensible question or indeed what
questions to ask?”
the diagnosis of Parkinson’s disease (PD) is first made, patients and
their carers often have lots of questions.
these questions is the responsibility of all those involved with care,
not just that of doctors. The information provided should be accurate
and consistent. When uncertain of the answer to a question, it is the
professional’s responsibility to seek the relevant information and to
ensure that this is passed on.
patients and carers may be intimidated by professionals and find it
difficult to ask the questions that concern them, or to admit that they
may not understand your answers. Anticipating common questions (“A
lot of people ask about …”) and presenting the same information
in different ways may help.
most commonly asked by patients with PD and their carers include:
certain is the diagnosis? Are there any tests or investigations that
would make a difference? Would a brain scan help? Is there any point
in me getting a second opinion?
my problems typical of the condition? How do I compare with other
is the cause of my Parkinson’s disease? Is it inherited? Are my
children at risk?
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other symptoms might I expect to develop? Will my current symptoms
get worse? How long will this take? Will I die from Parkinson’s
are the different treatment options? What are the possible benefits
of each and what are the risks? How likely are they to help and how
likely are side effects? How long before I notice any benefit and
how long will it last?
I have to take drugs? What about complementary therapies? What about
there anything I can do myself to help my symptoms, or prevent them
getting worse? Is there anything that I should avoid doing? What
should I tell my family and friends?
can I get more information about Parkinson’s disease and its
is important that people are not overloaded with information when they
first present. Questions can be addressed gradually over the weeks
after diagnosis, prioritising the issues that are most important.
usually needs to be repeated several times to ensure full
understanding. Giving patients and carers relevant written information
to back up what is said, should be part of routine care.
The Parkinson’s Disease Society (tel 020
7931 8080) can provide
information about all aspects of PD and its management
Useful books include:
‘Parkinson’s At Your Finger Tips’, by
Marie Oxtoby and Adrian Williams, published in 2002 by Class
Publications, London. ISBN 1 872362 96 6