Here are some thoughts adapted inspired by Dr. Bernie Siegel's
book, Love, Medicine and Miracles adapted for the Parkinson
patient.
Don Berns
THE PARKINSONS CHALLENGE
"Becoming an ExPap"
(Exceptional Parkinson's Patient)
Some Thoughts/Suggestions/Ideas
compiled by Dr. Don Berns(not medical doctor)
-13 plus yr. member of the Park Club
I.Advantages
A.Eat all you want without gaining weight
B.The best parking spots are always available after obtaining
handicapped parking placard
C.Lots of time to think, pray, reflect
D.Learn flexibility, patience, discipline, empathy
E.Lower blood pressure
F.Incidence of cancer is lower
II.Attitudes
A.Take Control of your life in all areas where possible.
B.Be a victor not a victim. Realize you are a special person
called to meet a special challenge. Learning to meet challenges
can help every other area of our life to go better.
C.Positive Attitude
D.Opportunity to try new things
E.Do what you can when you can. What you can't do save for another
time.
F.Avoid whenever possible time pressures/deadlines
G.Take control for your own treatment. Plan your therapy.
H.Educate yourself. Become an expert in Parkinsons.
I.Educate your friends/family. They need your help in coping.
J.Communicate with Care-giver
K.Allow yourself one minute a day to feel sorry for yourself.
No More!
L.Sense of Humor--laughter releases healing endorphins
ATTITUDE by Charles Swindoll
"The longer I live, the more I realize the impact of attitude on
life. Attitude, to me, is more important than facts. It is more
important than the past, than education, than what other people think or
say or do. It is more important than appearance, giftedness, or skill.
It will make or break a company, a church, a home.
We have a choice every day regarding the attitude we embrace for
that day. We cannot change our past. . . we cannot change the fact that
people will act in a certain way. We cannot change the inevitable. The
only thing we can do is play on the one string we have, and that is our
attitude. . . I am convinced that life is 10% what happens to me, and
90% how I react to it. And so it is with you---we are in charge of our
attitudes."
III.Communication Devices
A.Remote control speaker telephone with operator headset available
through Pacific Telephone's T.D.D. program. For info call
1-800-422-4418
B.Use tape recorders, computers, intercoms
C.Radio Shack power house system for controlling house lights and
appliances from remote locations e.g. from bedside.
D.Doctors
1.Find the most knowledgeable doctor re Parkinsons in your
area.
2.Invite him/her to team up with you.
3.Ask questions. Lots of them
4.Take responsibility for your treatment.
5.Remember you are paying the doctor to work for you. Work
hard to develop a good working relationship with this most
important employee.
IV.Education
A.Ignorance/denial only works for a short while
B.Once you have Parkinson's you might as well find out how to make
the best of it
C.It is important to educate others close to you (perhaps more
important) as well as yourself. People are largely uninformed or
worse yet, misinformed about Parkinsons. When sharing for the
first time with a friend you may find it helpful to ask, "What do
you know about Parkinsons Disease?"
D.Some resources
1. U.P.F. newsletter from the
United Parkinson Foundation
360 W. Superior St.
Chicago, IL 60610
312-664-2344
2. Parkinsons Bulletin Board for computer users
805-934-4950 Computer.Settings 8,N,1 2400 baud
3.PEP (Parkinsons Education Program) Exchange
3900 Birch St. #105
Newport Beach, CA 92660
4.Young Parkinsons Support Network
1041 Foxwood Drive
Santa Maria, CA 93455
5.California Parkinson's Foundation
2444 Moorpark Ave. Suite 316
San Jose, CA 95128
408-998-2722
6.Guides to better management of Parkinson's disease
PROPATH
P.O. Box 123
East Brunswick, N.J. 08816
V.Exercise
A.Choose sports/activities that are possible - not frustrating
B.Exercise daily both brain and body
VI.Medications
A.Pill holder
B.Pill timers (Radio Shack- comb. countdown timer/holder)
C.When traveling carry double supplies of meds in different
locations
D.Ask care giver to carry extra meds when going out.
E.Extra meds at office
F.Small portable water bottles you can carry with you to take
pills on schedule in case there is no handy access to water
G.Constant fine tuning process
1.Keep charts
2.Note what works & what does not
3.Be broad in your analysis noting such things as food, sleep,
stress, empty/full stomach, combination off meds
4.Delay (start up time) rate and decay (lasting time) rate
H.Understand possible side effects
1.Fillers in meds increase flatulence (farts)
2.Some cause mental confusion
3.As much as possible distinguish between med side effects and
Parkinsons
I.Eat a cracker before first dose in morning to get gastric juices
going speed up absorption of sinemet in small intestine.
J.Sinemet C.R.
1.Work faster broken in half first
2.May be combined w/ reg. Sinemet for helping start-up
VII.Practical Aids/Tips
A.To reduce the annoyance of drooling
The Yellow Chamois $10 + sales tax, +$1 ship/handling
Continental Exhibitors
P.O.Box 2017
Walnut Creek, CA 91788-2017
B.Do not bleach white underwear if taking Sinemet. The bleach
reacts with urine traces and permanently discolors.
C.Consider Medic Alert ID which will provide basic medical
information to an attending physician in case of an accident.
For info phone 1-800-ID-ALERT
VIII.Some Suggestions
A.Anticipate needs during the day and prepare for them during
times of maximum mobility.
B.Learn to do things in terms of priorities so that the most
important or necessities get done first.
C.Maximize rest times through use of audio/video tapes, special
radio or TV programs
1.Portable TV/VCR in bedroom
2.Walkman with preset station buttons
D.Try new things that you have never done before. Learn/read
about new topics/subjects so that you have a sense of
achievement/accomplishment.
E.Sleep
1.Satin sheets, lightweight thermal covers, electric
blankets
2.Satin slippery pajamas
3.Convenient nightstand to hold meds, glass of water,
other necessities
4.Communication devices by bedside-- bells, intercom,
Radio Shack Power system switches
IX.Social
A.Push yourself to maintain social contacts.
B.Resist the temptation to become a social recluse
C.Anticipate questions such as "How are you?" Think about
appropriate answers.
X.Support Groups
A.People with whom you can share concerns, helps according to
age and stage of Parkinsons
B.Discover the joy in sharing from your own experience in ways
that help others
