Living with Parkinson's disease isn't easy. If you live alone, it can
be all the more challenging. Like many young people with Parkinson's,
I was living on my own when I was diagnosed. As the illness
progressed, I found myself having to deal with issues that never
occurred to me when I was able-bodied. How do you deal with the
physical, emotional and social implications of the disease while
living on your own? Perhaps what I have learned can help you.

1. Do a realistic self-appraisal

Because we are all affected differently by this illness, it is
important that we periodically do a realistic self-appraisal. We need
to consider exactly where we are at any point in time so that we can
make our lives as stress free as possible. Issues to consider
include: What are my symptoms? How do they affect the quality of my
life? Am I coping? What adjustments do I need to make?

I lived on my own for eight years. I functioned well initially as my
symptoms were all controlled by medication. After a few years the
illness progressed and the drugs became less effective. My symptoms
included tremor, dyskinesia, freezing and "off" periods. As they
increased in severity they affected my life in different ways. The
way my "off" time manifested itself constantly changed. At first it
meant that I was a little slow and after 7 or 8 years, being "off"
literally meant being unable to move. I dealt with this by planning
my day accordingly. I had to maintain a flexible schedule and work
around each window of opportunity presented by my "on" periods. I
knew that when I came on I would get around 1 or 2 hours before
going "off", so I would do my shopping, cleaning and other activities
during this time. I also knew that I would benefit from the "sleep
effect" which meant I was able to move for about half an hour after
waking up. During this time, I would shower and do some household
tasks. I would also keep medication next to my bed so that I didn't
have to go to anther room to get it.

2. Don't be afraid to ask for help

In our society we are taught to be independent and self-reliant. I
was reluctant to ask anyone for help initially and viewed it as a
matter or pride. This changed when someone gave me a different
perspective. He said that I should allow people to have the gift of
giving. I found people genuinely felt good about helping me through
tough times. I know that I would have wanted to help had the roles
been reversed. My friends often volunteered to drive me to
appointments. One friend would even do my food shopping whenever she
went to the supermarket.

Having someone to call in case of an emergency is important too. On
more than one occasion I would call a friend to rescue me when my
drugs wore off unexpectedly and I got stuck. In addition to family
and friends, it may be helpful to keep the numbers of your neighbors
handy.

3. Seek out professional service providers

When dealing with chronic illness, it is easy to neglect basic
household chores. When I was "off" for example, the last thing that
would go through my mind was to vacuum. Fortunately, there are many
service providers that specialize in helping people at home. Besides
hiring cleaners, who came once a week, I used the help of a woman
from a Sydney-based company called Get Organised. As the name
implies, her specialty was to go to people's homes and businesses and
provide assistance where needed. Given that I eventually had to work
from home, her service was much appreciated. She organized all my
files, paid my credit card bills, rearranged my closets, and even did
the dishes. I had also heard of food companies that bring meals every
day. These services, while very worthwhile, also proved to be
expensive.

4. Modify your equipment

As my tremor and rigidity became more pronounced, I had difficulty
holding cups without spilling. My mother had a good solution for
this. She bought a big drinking cup that had a lid and a straw. I
used this for all my liquid consumption whether it was soup, coffee
or water. I spoke with a person who added bulky grips to his
silverware and writing utensils. Another person rearranged her
cabinets in her pantry so that she could have easy access. She also
installed handles on her bathtub to provide stability.

5. Be kind to yourself

It is easy to get frustrated when you live alone with Parkinson's.
Try and maintain a positive attitude where possible. You know you
will have rough days so there no point beating yourself up. Accepting
that you have the illness without judgment will go a long way toward
coping. I would get extremely anxious and frustrated when I
went "off." All this would do was waste energy. I found that my "off"
periods seemed to pass over more quickly if I was relaxed. There are
ways to work on your state of mind. I saw a psychiatrist after my
initial diagnosis and worked with a life coach as well.

Part of being kind to myself also involved acknowledging that I
couldn't live on my own anymore. By the time I was 35, I needed full-
time care. I was no longer coping with basic chores and was living
like a hermit. Despite all my efforts to live independently, my
quality of life was suffering too much. Fortunately I was able to
move in with my parents. For this, I am grateful. I realize that for
many people, moving in with a loved one or friend may not be an
option. Even so, it is important to remember that there are always
options for dealing with this disease. As treatments for Parkinson's
continue to improve and we come closer to finding a cure, the future
looks bright for all of us living with PD.

By Richard Lurie