Living
with Parkinson's
This
excellent publication is provided with permission of the
European Parkinson's Disease Association.
Click here to access this pdf document 
One of the key things to remember is that most people with
Parkinson’s disease continue to live long and rewarding
lives.
Living with Parkinson’s does require continual re-adjustment
as the disease slowly progresses through to severe disability.
Depending on the level of impairment, daily activities such
as getting dressed, driving and eating may become more challenging.
Roles within the family, in the community and at work may
need to be redefined. An individual’s sense of who
they are can also be challenged if the disease adversely
affects intimate relationships. Medical treatment can help
control symptoms and improve function but it requires careful
management to minimise potential side effects.
Family
Family responsibilities can be daunting enough without the
addition of a chronic and ultimately disabling disease.
Parents need physical strength and stamina to keep up with
an energetic young family and participate in all their activities.
Having children can also help you to focus on the here-and-now.
They provide a powerful motivation to stay active and as
well as possible.
The typically slow progression of Parkinson’s disease
means most people with it will not miss out on full participation
in and enjoyment of family life. Relationships, roles and
responsibilities within the family may subtly change as
the disease progresses but there is sufficient time for
that adaptation.
Children should be included in much of the discussion about
Parkinson’s disease and its impact. They are more
likely to cope better themselves when they are kept appropriately
informed. Ultimately they may become one of the main sources
of support for a parent with Parkinson’s disease so
having them on the team early is to be encouraged.
Work
A diagnosis of Parkinson’s disease does not mean the
end of participation in the workforce. Depending on the
nature of the work, mild symptoms such as a slight tremor
in the non-dominant hand may not affect your employment
at all. Given that our sense of identity and self-esteem
is often strongly associated with our work role and ability
to produce an income, it is indeed preferable to remain
in the workforce for as long as practical.
There are a number of issues to consider and strategies
you can adopt in order to maximise your ability to work
safely and productively while also living with Parkinson’s
disease.
When symptoms start causing problems in the workplace, it
may be time to start on medication, or have your current
medications reviewed and adjusted. See your doctor for advice
on more effective symptom control. Surgical treatment options
may also be discussed in younger people.
Disclosure
Telling your employer that you have Parkinson’s disease
depends on you - your relationship with your employer and
colleagues, the nature and extent of your symptoms. Often
there is a reluctance to disclose for fear of negative attitudes,
loss of entitlements or promotion opportunities and even
job loss.
However it is illegal in Australia for employers to discriminate
against employees or potential employees on the grounds
of disability. There are also potential benefits from being
open and honest with your employer, including the opportunity
to take advantage of flexible work practices or job redesign.
Job modification
Relatively simple adjustments in the workplace such as the
installation of a handrail may make a huge difference for
people with Parkinson’s disease. Depending on their
job and their most problematic symptoms, other people may
benefit from the removal of specific tasks such as those
requiring fine motor skills and coordination or heavy lifting.
Flexible work practices such as regular breaks, reduced
hours or working from home may also be helpful to accommodate
fluctuating symptoms. Talk to your workplace health and
safety officer or human resources staff. If they can’t
help, they will be able to access external advice.
Early retirement
If it is impossible to continue in your present job, check
with employment agencies about other options. They have
a responsibility to assist people with disabilities. Whatever
the outcome, remain active. Try to find other purposeful
activities that utilise your skills and keep you interested
and busy.
Sexual relationships are a normal, healthy part of adult
life and having Parkinson’s disease should not deter
people from continuing to enjoy intimate activities. However
it is worth understanding that the disease can impact on
people in different ways and some adjustments may need to
be made.
Some people find their sex drive has all but disappeared
since their diagnosis of Parkinson’s disease. This
can be a result of the worry and stress associated with
any new circumstances and may gradually settle down as people
learn to accept and cope better with the diagnosis. Fatigue
is also a well-known cause of loss of interest in sex.
Prioritising some time when you are rested and relaxed and
symptoms are well controlled can help maintain an intimate
relationship.
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.
Parkinson’s disease can also interfere with sexual
activity at an emotional level. People with the disease
may not feel sexually attractive as their self-esteem may
have taken a battering or they may be depressed. There may
also be new issues arising in long-standing relationship
especially as the disease progresses and one partner takes
on a caring role for the other. It is therefore important
to keep the lines of communication open. Talk to your partner
about how you are feeling, how they are coping and what
can be done to rejuvenate the relationship.
Don’t worry that sex may be too strenuous or exacerbate
symptoms in people with Parkinson’s disease. Physical
activity is almost always a good thing. And a healthy sex
life is likely to be a great comfort and a distraction from
other day-to-day problems.
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.
Driving
A driver’s license is a symbol of independence in
our society and for that reason alone, most people want
to retain the ability to drive for as long as possible.
The desire to be independent and to maintain a current lifestyle
has to be balanced against good sense and judgement when
it comes to the likely impact of Parkinson’s disease
on an individual’s ability to drive safely.
Your doctor has a key responsibility in the assessment of
fitness to drive and will help you decide when your disease
has progressed to a stage where an unconditional license
is no longer appropriate. Physical symptoms that restrict
your movement or uncontrolled involuntary movements can
obviously interfere with your ability to control a vehicle.
However mental clarity and judgement, which can be affected
by either the disease or medications, are also critical
factors in on-road safety.
Source: This article is provided courtesy of Parkinson’s
NSW.
