Living with a chronic illness like Parkinson's disease (PD) brings
many challenges, including how to keep information collected on the
disease and treatments organized. Getting organized is not unlike
your Parkinson's treatment regimen—you need to find the right fit for
you. Just as one filing system may work for one person and not
another, your unique combination of medications and therapies may
work for you but not someone else.

"There are many ways to organize without having to rely on the
alphabet," says Mary'n Hallock, Organization/Productivity Consultant
of Divine Order Professional Organizing in St. Paul, Minn. "Find
something that already works for you, like an artsy belt rack or a
beautiful basket that holds your mail. Analyze why it helps you
organize. Look for simple ways to organize that fit who you are."

What's the Best Approach to Organizing?
Moving from chaos to calm can take time, and most important, the way
in which you get organized has to fit your style and feel right so
you can stick with it. A good way to start is by identifying specific
areas you want to improve. For example, you might have stacks of
medical bills scattered across your kitchen counter. A filing system
can help you reclaim workspace. Or maybe tracking your appointments
and medication schedule feels overwhelming. Working with paper or
electronic organizers can bring peace of mind. Once you have a task
or area in mind, learn about and experiment with different options
until you find systems that work for you.

Organizing Information About Parkinson's
When you are living with Parkinson's or caring for someone who has
PD, you come into contact with a lot of information about the
disease. Researching the latest treatment options and news can yield
plenty of helpful resources…but then what?

Printed Information
When dealing with printed information like brochures, newsletters and
magazine or newspaper articles, first think of a broad category for
filing, then drill down to a more specific category. For example, if
you find an article addressing how new medications show promise in
treating PD, you might first create a hanging file folder
called "Research" and then put the article in a folder called "New
Therapies."

"Try filing based on how you would find something again," says
Hallock. "And remember, you can change your mind. If you think you
will only have one article on a certain topic, you can just put it in
the `Research: Miscellaneous' file, then move it later on if you
collect more related articles."

Electronic Information
Everyone has favorite Web sites and important e-mails they want to
reference later on. Maybe you even like to save your chat dialogs. As
you work with electronic files, don't underestimate the power of
folders. Periodically check on your Favorites or Bookmarks and group
one or two Web sites into a folder and delete sites you no longer
use. That way you won't have to do a lot of work all at once, and you
can stay on top of Web resources. The same goes for e-mail and other
files you save. Use folders to group like items—correspondence, news,
images, etc. At the end of the year, you can group all folders
together into one folder for the year, then start again.

If you like to enhance your filing—paper-based and electronic—with
software tools, some options include Smead's Arrange™ File
Organization System and Monticello Corporation's Paper Tiger.

Storage Options
With printed information, three-ring binders, notebooks, file folders
and accordion folders provide many organizing options. Store papers
in a file cabinet or smaller file boxes and keep them in a home
office space, a hall closet or a specific spot in your basement. If
you need to access these files often, make sure they are handy. You
can also archive older information for several years and—if it seems
appropriate—eventually get rid of it. Check your local office supply
store for more storage ideas.

Organizing Treatment Information and Records
Long-term medical care and treatment can mean many bills, receipts
and other important documents. Tracking the details is vitally
important to your overall health—physical, emotional and even
financial.

Health Journals
Keeping a health journal is one step you can take to monitor your
health and enhance communication with your medical providers. Some
people find it helpful to track symptoms in a journal or on a
calendar. Rating the severity of your symptoms and side effects on a
simple scale of zero to 10 and the time of day you experience them
can help spot and track trends. Other information you may choose to
include:

Doctor visits
Dates and results of health screenings, tests and procedures
Dates of major illnesses and surgeries
Medications—name, dosage, time-of-day you take it, etc.
Journaling is personal and you there are no rules for what to write.
Feel free to include emotions, exercise or sleep habits, allergies,
and any reaction or event you find important. Focus simply on
organizing information chronologically.

Medications
It's always smart to keep track of medication to avoid any adverse
reactions that may occur by missing or mixing drugs. Keep a current
list with:

Prescription name, dose, directions and prescribing doctor
Date on which you began and ended using the medication
Purpose of the medication and any notes on dose change or reason for
stopping
Over-the-counter drugs or supplements and the dosages
You also may find it helpful to keep a diary or log of your
medication schedule, either as part of a health journal or calendar,
or as a separate document. When discussing treatment plans with your
health care providers, this information can be key to staying healthy.

Once you have a treatment plan in place, there are several ways you
can stay organized:

If you take pills daily, buy a plastic pillbox with compartments for
each day of the week. Fill it once a week to simplify your sorting
work.
Place any medical equipment you need on a daily basis in a small case
that goes with you everywhere.
Note medication times or dates in your calendar or electronic
organizer so you don't forget to take any drugs that require an
irregular or less repetitive schedule.
Bills and Receipts
Keeping medical bills and receipts organized is important. Though all
this paper can be confusing, there are some simple steps you can take
to add clarity.

First, separate your bills by service provider name. Put the oldest
bill on the bottom of the stack and the newest on top. Then start a
separate stack for Explanation of Benefits (EOB) forms. Arrange the
EOBs with oldest on the bottom and newest on the top. Now you are
ready to match up the provider statements with the insurance payment
EOB forms. Look for service dates and amounts to help you make
matches.

"Somewhere on every medical form or bill is a number," says
Hallock. "Try to gather all papers with the same ID number together,
then staple them together. Paper clips are fine for short-term
storage, but staples help pages stay together on a more permanent
basis."

Mary'n also recommends that when you talk to your insurance company
or a health care service provider that you keep the corresponding
bill or letter with you. Write down the name of the person you talk
to, the date and a quick recap of your discussion. Then if any
further questions or problems arise, you have a paper trail.

If you reference your bills and EOBs frequently, you may find it best
to store them chronologically in three-ring binders or accordion-
style folders. Regular file folders also are a good option. When it
comes to storing receipts, accordion-style folders or envelopes with
easy open and close clasps can keep smaller pieces of paper from
getting lost. Making copies of receipts might come in handy if you
use them to claim reimbursements from a health care flexible spending
account.

Organizing Contact Information
Your journey with PD will put you into contact with a wide variety of
doctors, therapists and fellow patients. Some people find a Rolodex®
to be the best solution for keeping up with contact names, phone
numbers and email addresses. There are many different styles of
binders and card files, so you can write contact information on small
cards or even store business cards.

Maybe a hand-written list of contacts is more your style. You can go
as elaborate or simple as you like, arranging the list
alphabetically, by category or any other way that works for you. Be
sure to update the list as necessary and make copies for family
members or caregivers.

If you like working with computers, electronic organizers might be a
good fit for you. Many handheld organizers, like Palms ™ or Pocket
PCs, offer a wide variety of features and prices to meet your needs.
These organizers are small, lightweight and offer peace of mind
knowing your data can be backed up on your computer as well as on the
handheld. And of course, electronic organizers also include a
calendar to help keep track of your schedule.

Organizing Schedules and Calendars
"Work with one calendar…only one," recommends Hallock. "Keep it
simple, keep it with you and back it up." With electronic organizers,
backing up data is easy. If you prefer a paper-based calendar or
organizer, periodically photocopy the upcoming month or several
months. Then you can recycle the backup pages once that period of
time has passed.

Need help remembering something that happens at a specific time? Many
electronic organizers, watches and cell phones have alarm features to
notify you when it's time to take your medication, call your doctor
or get to that appointment.

"People love to write appointments on little bits of paper, but they
are so easy to lose," says Mary'n. "Carry a little notebook where you
can jot down appointments, directions, ideas and more. Then transfer
the information safely into your calendar later."

A calendar is only as effective as you make it. Time management is
easier when you look at your calendar so you know what's on the
horizon. Check your schedule at the beginning of the week and at
night so you don't forget any important events.

Start Organizing Now
"One of the biggest mistakes people make when it comes to organizing
is putting it off," says Mary'n. "They put off organizing until they
are overwhelmed. But it doesn't have to be that way. Start now. Clean
out your e-mail for 15 minutes. Gather all your bills for 10 minutes.
Set a timer and stop when it goes off. Then reward yourself. As you
make progress and get rewards, you give your brain the message that
organizing is fun and you set yourself up to win."

As you work to organize your life, remember to start small and try
systems that fit your personality. If you need more help, you can
recruit a friend, family member or even a professional.
By Melissa Ward