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COPE WITH HOPE
Nina Brown
When I was diagnosed with Parkinson’s disease over fourteen
years ago, I realized that living with a “progressive”
disease was going to require continuing adjustments and
accommodations through the years and that the word “cope”
would hold new importance in my vocabulary. I also
recognized that the decision as to how I would cope was
mine, as it is yours. I chose to focus on the positive. I
was not wrong 14 years ago. Life is certainly more
difficult for me now, but whatever the circumstances, I
still feel a smile and a positive attitude make it easier to
face the future. I’m not suggesting a “don’t worry, be
happy” attitude; but life should be looked at as an
adventure to be lived rather than a problem to be solved.
Perhaps some of the following suggestions will be helpful.
Concentrate on the positive. You may not have the
ability
to change what is happening to you, but you can change how
you relate to it. People generally find what they expect to
find. If you expect to feel bad, your body won’t disappoint
you. You will feel bad. If you expect to feel good,
there’s a greater possibility you will feel good. Also
examine the stories you tell yourself (and others) about
your illness. It is easier for family and friends to offer
support to someone with an optimistic attitude.
Parkinson’s has been described as a “yo-yo” disorder…one
hour up, the next down; one day good, the next bad. It
helps to remember that one bad day is only one bad day. It
does not constitute a trend. Assume tomorrow will be
better. Your mind can help heal your body when bolstered by
hope and expectation according to studies on the “placebo
response.” Better symptom control lies not only with pills
or surgery, but with ourselves as well.
Acceptance. Parkinson’s is just something I have…like
brown eyes; so I refuse being referred to as a “patient”
unless I’m in a doctor’s office. Acceptance does not mean
you need consider yourself “sick.” Unlike having a headache
though, Parkinson’s can be difficult to hide. It’s easier
not to try. Be open with others. I have found that people
are interested in learning about the disease and are
appreciative that you shared the information. Rather than
think of Parkinson’s as a problem, consider it a situation,
a challenge, an opportunity. You will be less anxious, less
frustrated and less stressed, which will result in fewer
symptoms.
Become informed. Knowledge is the first positive
step
toward being in control. Be responsible for your own health
care. You know your body best. It’s vitally important to
read everything you can find! Visit your library, request
to be put on mailing lists for newsletters and medical
updates, use the Internet and attend lectures. You’ll
better understand why symptoms occur which will allow you to
know what questions to ask and how to properly describe the
problem when you see your physician. Find a doctor who has
knowledge and experience in treating people with
Parkinson’s. One who is interested, patient, understanding,
cooperative and willing to take the time to work with you.
Your pharmacist is another good resource for information.
Join a support group for valuable, shared, personal advice
and support.
Set achievable goals. You may need to set new and
more
achievable goals because of the limitations Parkinson’s has
placed on you. It’s important to learn to pace yourself.
When adapting to a less active schedule, there is a tendency
to overdo when you feel good. After a busy period, schedule
activities that don’t require a lot of energy. Have an
alternative in case your symptoms require you to cancel a
planned event. Planning ahead gives you the flexibility to
accomplish things when you feel good. For instance, you can
shop in advance for birthday and anniversary presents.
Address cards ahead of time.
Keep a sense of humor. Laugh at yourself. A
laugh a day
is more important than an apple in keeping the doctor away.
When a chuckle would feel good, go to the closest drug store
or card shop and tickle your funny bone by reading greeting
cards. A laugh is much better for your immune system than
getting angry or frustrated.
Simplify your life. Learn to say “no” without feeling
guilty. Find easier ways to do things. Determine your
priorities. Eliminate the unnecessary.
? Call stores to make sure they have the item you need.
? Shop during off-hours to avoid crowds and lines.
? Get a disabled parking permit.
? Use stores that deliver or have drive-up facilities.
? Use a cordless telephone; keep a telephone by your bed;
consider an automatic dialer and/or a speaker phone.
? Always carry extra medication with you. Get a sports
bottle to have water for taking pills.
? Keep a written schedule of your medication. Buy a pill
container that has a weeks worth of dividers. This saves
time and identifies if you’ve taken a particular dose.
? Get a timer to remind you when medication is due.
? Use stick-on labels or a pre-inked rubber stamp when you
need to write your name or fill out forms.
Keep active. Exercise, both mental and physical, is
essential in maintaining your lifestyle. It prevents your
muscles from deteriorating, strengthens them, reduces
tension and rigidity, improves your ability to rest and
sleep and enhances other bodily functions. Walking is one
of the best exercises. Choose activities that let you play.
Take dancing lessons or enjoy some of the less strenuous
sports such as golf, tai chi, bowling, horseshoes or
swimming. The more active you are, the longer it will be
before you need physical, occupational or speech therapy.
Exercise can be fun and HAPS offers many of these options.
It’s also important to keep active socially. Don’t allow
yourself to become isolated. Participate in our support
groups to meet new people, develop new friendships and help
avoid depression. Instead of focusing on yourself, help
someone in need. It will get your mind off of yourself and
you’ll remember how much you have to be thankful for.
Have faith and never give up hope. Reflect on the
wonderful attitude of Charles Murray who wrote to the
Parkinson’s list on the internet: “The way I look at it,
living with PD is a bit like venturing into the Himalayas
while most of our brothers and sisters travel less rugged
slopes. We can grumble about how steep and hazardous the
climb…preoccupied with the expense of our climbing gear, the
physical exhaustion and the fear as the slopes turn into
shear walls of granite. Or, we can live in the moment and
focus on appreciating the spectacular beauty found only in
such imposing terrain. No one can take this choice from
us.”
Have faith that with all the research being done, the hope
of finding a cure appears closer than ever. Actively
working to help” find the cure” (by being an advocate) helps
give me courage and energy. I invite you to join me in
working toward that day.