Hey Karen... Ya gotta watch out for our two "resident Maineiacs," cause the
next thing ya know you'll be recruited as a member of the "Ivan's Video
Packing and Shipping Company!" <grin> You'll end up preparing mailings of
Ivan's excellent PD-related video for shipment alllllllllll over the world as
more and more orders pour in.

THEN there's the "Maineiac's for Ivan's Oscar Committee."  As a woman, you'll
like THAT 'cause unlike the Packing and Shipping Company, " ya get to buy new
outfit to wear to the Oscars if Ivan wins!  NEAT!!

One last thing with these two fellas, Karen - You might find yourself doing
all the work and THEY'LL do all the supervising! <DUCKING FAST>  So stand firm
of your rights!  Remember - even in MAINE women have been liberated.

Seriously, Karen.. Ivan 'n Greg are two super persons, and I know they'll both
aid you in any way they can in your mutual battle against the disease, as will
the rest of our PD List-family.

Barb Mallut
[log in to unmask]



----------
From:   Parkinson's Information Exchange on behalf of Gregory E. Leeman
Sent:   Thursday, February 19, 1998 2:42 AM
To:     Multiple recipients of list PARKINSN
Subject:        Re: Introduction from Maine

Hi Karen,
Welcome from a fellow Maineiac.  As Ivan said we are very pleased to ha=
ve
another young member to identify with.  Hopefully we will meet sometime=
 and
compare war stories.  If there is anything I can help you with please d=
on't
hesitate to ask.
Regards,
Greg Leeman 37/6
[log in to unmask]

-----Original Message-----
From: Karen Bardo <[log in to unmask]>
To: Multiple recipients of list PARKINSN <[log in to unmask]
>
Date: Wednesday, February 18, 1998 8:02 PM
Subject: Introduction from Maine


>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 a=
nd
>coping wise.
>
>My name is Karen Bardo.  I am 44 years old and was diagnosed with
>Parkinson=92s Disease when I was 42 years and 10 months old.  I live i=
n
>Alna, Maine with my husband, Jon, and our Maine Coon cats, Sam and Jak=
e,
>(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 stre=
ss
>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=92s 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.  Th=
en
>I went to my family physician who sent me to a neurologist who diagnos=
ed
>me.
>
>In August of 1995 my left shoulder froze.  Other symptoms were twitchi=
ng
>and curling toes on my left foot, eating and brushing my teeth two
>handed, small handwriting, jump starting my left hand with my right ha=
nd
>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 m=
e
>but once in a while I experience gripping fear around what this diseas=
e
>may take away from me.  Right from the start I have been very open wit=
h
>family, friends, and coworkers about having PD.  I have a lot of peopl=
e
>in my life who care about me and whom are rooting for me.  Everyone ha=
s
>their fingers crossed and are hoping for a cure.  It amazes me how man=
y
>people have told me stories (most of them positive) about family membe=
rs
>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 m=
y
>husband=92s 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.  Th=
ey
>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 m=
y
>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 mak=
e
>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 sometim=
es
>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 fel=
l
>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 i=
n
>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 a=
s
>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 fu=
n
>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=92ai Chi class.  S=
ome
>of my interests include cross country skiing, camping (by backpack,
>canoe, and car), gardening, hiking, boating, sewing, bicycling, playin=
g
>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 fo=
ot
>and leg.  The physical therapist who helped me unfreeze my left should=
er
>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 Wiscass=
et
>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 ca=
n
>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 ke=
ep
>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 t=
he
>combination of sinemet with caffeine or bananas makes me sick.  I woul=
d
>appreciate any suggestions regarding this problem.  I know the Sinemet
>would be more beneficial if I could take it on an empty stomach but th=
is
>does not seem possible for me.
>
>Originally I was taking Sinemet CR and had strange spells every so oft=
en
>(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 mig=
ht
>be having a neurological breakdown.  Then she said oh goody goody I lo=
ve
>it when I get to call the ambulance.  Give me a break!  Now that I hav=
e
>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., 4:0=
0
>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 thi=
s
>right now because his printer is in Maine.  He won=92t be back in Main=
e
>until April.  Will this be too late?  If it is, I will encourage him t=
o
>e-mail or call them.
>
>I apologize for the length of this message.  I would appreciate hearin=
g
>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!
>