February 18, 1998

Hi Everyone -

I joined the Parkinson Information Exchange on December 29th.  Reading
all of your messages everyday has been very helpful both information and
coping wise.

My name is Karen Bardo.  I am 44 years old and was diagnosed with
Parkinson’s Disease when I was 42 years and 10 months old.  I live in
Alna, Maine with my husband, Jon, and our Maine Coon cats, Sam and Jake,
(adopted from the local animal shelter).  I have worked for the
Wiscasset, Maine School Department for 15 years as the administrative
secretary for the Special Services Department.

Do any of you live in Lincoln County, Maine or do you know anyone who
has PD who does?  Also, do any of you have specific information
regarding the support groups in Brunswick and Portland?  Is there a
support group in Portland specifically for younger people with PD?

From August of 1988 to August of 1995 I was experiencing extreme stress
because of my job and blamed many of my physical problems on this.  In
April of 1996 I started looking for answers and was diagnosed with
Parkinson’s Disease on July 3, 1996.  First I went to a foot doctor who
sent me to a physiatrist who said there was nothing wrong with me.  Then
I went to my family physician who sent me to a neurologist who diagnosed
me.

In August of 1995 my left shoulder froze.  Other symptoms were twitching
and curling toes on my left foot, eating and brushing my teeth two
handed, small handwriting, jump starting my left hand with my right hand
in order to write, my left arm would twitch when typing, and it would
shake when answering the telephone at work.  I am left handed and all of
my problems have been pretty much on the left side.  In hindsight, I
think I was having symptoms of PD starting in 1991 if not before.

I feel very lucky to have found out what was wrong with me so quickly.
For me it was a relief to know what was wrong.  So far I have not been
in denial, experienced anger, or spent too much time questioning why me
but once in a while I experience gripping fear around what this disease
may take away from me.  Right from the start I have been very open with
family, friends, and coworkers about having PD.  I have a lot of people
in my life who care about me and whom are rooting for me.  Everyone has
their fingers crossed and are hoping for a cure.  It amazes me how many
people have told me stories (most of them positive) about family members
who have PD.

One of the factors that helps me deal with having PD is the dynamic
duo.  These two people are an inspiration to anyone.  One of them is my
husband’s sister.  She has cerebral palsy and walks with crutches.  Her
husband has a from of muscular dystrophy and uses a wheelchair.  These
two people lead very full lives despite their physical challenges.  They
both work full time (they get up at 4:00 a.m. in order to get to work on
time) and have a very busy social life.

Right now my biggest problems are internal tremors and problems with my
left foot.

I have felt the internal tremors (aching, tingling, burning sensations)
everywhere from the top of my head to the bottom of my feet.  They make
me feel like I am in the middle of an earthquake.  I have gotten very
used to these tremors and they are really not a problem except sometimes
they make me tired.

The problems with my left foot include gripping and curling toes, hot
sensations, strong internal tremors, prickly feelings like my foot fell
asleep and is trying to waking up, big toe folded over my other toes,
muscle spasms, toes feel like they are going to break off, and pains in
toes and foot.  I have a lot of trouble keeping my left leg and foot
still, my left foot turns in and out, and I  tend to be on my toes
whether sitting or standing.  I cope with these problems by taking my
shoes off, tapping my foot, standing on my toes, doing foot circles,
sitting on it, and pressing foot against windshield of the car (only as
a passenger not a driver).  My entire left leg is sore at times
especially my left ankle. My right foot keeps trying to join in the fun
but so far what it is doing is minor compared to the left foot.

I treat myself very well and do a lot of good things for myself.  I am
always looking for new activities that might help me deal with this
disease.  I walk, stretch, and use hand weights on a regular basis.  I
am taking tap dancing lessons and just finished a T’ai Chi class.  Some
of my interests include cross country skiing, camping (by backpack,
canoe, and car), gardening, hiking, boating, sewing, bicycling, playing
the flute and I love animals.  I receive lots of purr therapy from two
very cooperative cats.

I have found someone who is learning Shiatsu and we are going to start
working together in another week.  I am hoping this will help some of
the stiffness in my upper back and shoulders and maybe help my left foot
and leg.  The physical therapist who helped me unfreeze my left shoulder
used pressure points which were very helpful.  Therefore, I am very
hopeful that Shiatsu will be very beneficial for me.

In another week, I will be taking an adult education course in Wiscasset
called Better Health - Naturally.  We will be exploring alternative
health modalities such as laughter (my favorite thing to do), massage,
Shiatsu, polarity, Reiki, reflexology, hypnotherapy, naturopathy,
osteopathy, herbology, aromatherapy, etc..  This should be really
interesting and I am looking forward to finding out if any of these can
be helpful for a person with PD.

Since finding out that I have PD, I have learned to pace myself.  I
often run out of energy.  However, so far it has not stopped my from
doing anything I want to.  I believe in the use it or lose it
philosophy.  I pretty much am taking things on a day to day basis and do
not worry too much about tomorrow (except when planning my gardens and
camping trips).

Sinemet makes me very sick.  It makes me nauseous, gives me a horrible
headache, the sweats, and I want to curl up somewhere and sleep.  I keep
reading to eat crackers to help with the nausea but this does not work
for me.  Right now I am taking it with ginger ale and gingersnaps and
most of the time this keeps me from getting sick.  I have found that the
combination of sinemet with caffeine or bananas makes me sick.  I would
appreciate any suggestions regarding this problem.  I know the Sinemet
would be more beneficial if I could take it on an empty stomach but this
does not seem possible for me.

Originally I was taking Sinemet CR and had strange spells every so often
(usually once a month).  One spell which happened at work caused me to
be taken by ambulance to the hospital.  The school nurse told me I might
be having a neurological breakdown.  Then she said oh goody goody I love
it when I get to call the ambulance.  Give me a break!  Now that I have
been sick so many times on Sinemet, I am suspicious Sinemet CR was
causing me to get sick maybe in combination with my menstrual cycle.

As of today, I am taking 1 1/2 Sinemet 25/100 at 7:00 a.m., 11:30 a.m.,
4:00 p.m., 8:30 p.m. and 1 mg. of Requip at 7:00 a.m., 11:30 a.m., 4:00
p.m..  Does this sound appropriate and reasonable?

I am going to write to the Senators and Representatives from Maine
regarding funding the Udall bill.  My father is also going to write to
them.  However, he is in Florida right now and does not want to do this
right now because his printer is in Maine.  He won’t be back in Maine
until April.  Will this be too late?  If it is, I will encourage him to
e-mail or call them.

I apologize for the length of this message.  I would appreciate hearing
from any of you.

Thank you for listening!

Karen Bardo
([log in to unmask])

Keep Smiling and Laughing, Work Towards A Cure, and Never Ever Give Up
Hope!