Dear Diana, I am now 67 years old and was diagnosed with P about 8 yrs  ago.
I was prescribed just Requip at that time and slowly increased the  dose from
1 mg to 2 to 3 to 4 and  have had to increased the dose from  twice a day to
5 times today.  About 5 yrs ago the doctor added Sinemet but  before long I
read about Comtan which comes in a combination form with Sinemet  and is called
Stalevo and I am now taking it 5 times a day as well.   Stalevo made it
possible for me to write normally again, no more micrographia.  For this I am
thankful.  I have some off times some days and my doctor has  asked me to try
Amantadine 100 mg but it made no difference so I stayed with  just Requip 4 mg,
Stalevo 100 and the doctor added a 1/2 pill of longacting  carbidopa/levodopa
50/200 5 times a day.  I have been on the same dosages  for almost 3 years now.

My P- disease showed up subtly at first - I had trouble writing (I was
working as a critical care nurse and documentation is so important).  I had
trouble brushing my teeth.  My right arm was not swinging freely.
I felt a little stiff at times and could not go jogging any  more, and I took
forever to swim across the pool at the gym.  To get  used to the medication I
went to the Cook Islands on vacation with a friend  and there I began with
the gradual increases commonly prescribed to ease the  effect on the body until
you are up to 1 mg twice a day.  The difference  that little pill made was
remarkable. I went snorkeling every day and we  traversed a couple of islands on
bicycles, walked a lot, enjoyed. I wrote  postcards to friends...I went back
to work and chose not to tell anyone of my  diagnosis.

Later that year I was hospitalized with a problem that I evidently was born
with - a foramen in the  heart that apparently did not close the way it
should when you are born. An atrioseptal repair had to be done and it had to be
done with an open heart surgery so they could close that hole which they called
a gaping hole -
which by then had caused a reversal or shunting of the blood flow in the
heart causing a critically low oxygen contents in the blood that the heart sent
to my brain and body (48% vs the 99-100 that should have come through),

I imagine the reversal of flow had occurred from time to time as I recalled
severe headaches over several years whenever I spent time at high altitudes. I
 had traveled to India for instance and spent considerable time high up in
the  Himalayas.  So my substantia negra cells probably suffered  a decline  over
time until I finally I realized I must have some cardiac problem, feeling
palpitations and sudden hypertension. I went to see a doctor for an
echocardiogram (which he did to humor me, not because he thought there was  anything
wrong with me, I looked too healthy to him!!)  I insisted and much  to his
surprise, there it was, an atrioseptal defect!

In retrospect I probably had lost enough of those precious dopamine cells  to
develop Parkinsons over time. As you probably know by now, there are many
factors that hasten loss of those cells, toxins being all around us these  days.
  Who knows why you are losing yours.  But medication  will help, why are you
not taking them? True, I was not happy about taking  medications - never took
any pills until I was 60 yrs old and was  started on a couple of heart
medications to prevent atrial fibrillation  because of the patch that irritated my
heart's natural pacemaker, and then  the Requip to stave off some of the
symptoms of P.

Anyway, I went back to work after three months and managed fairly well for  a
couple of years - until another snag sent me into retirement - I contracted
mycobacterium avium complex which is a lung afflliction that is hard to get
rid  of, could be hospital or community acquired. I  went to a lung  hospital in
Denver to seek treatment because no one knew what to do with it here  in So.
California. I took medications for 18 months  to be sure it was  gone.  By
then my activity level was not great and I determined to change  that.  My first
P doctor told me not to join any Parkinsons support groups  - they will surely
depress the hell out of you, he said.  But when I  finally went to one I
realized how lucky I was.  I could still drive, I  could still manage my household
and all the activities of daily living and vowed  to do this as long as I
could.   Yes, I realized that I could not  return to work in a critical care area
as stress seems to make symptoms worse  but I could make my fight with
Parkinsons my job besides becoming a full  time housekeeper, gardener, accountant,
cook,baker....for me and my partner, who  has never made me feel less of a
person for having Parkinsons.

I corresponded with other Parkinsonians -met John Ball whose disease had
plagued him for over 20 some years but who ran 14 marathons during those years
to keep the disease at bay.  Exercise, it seems, is not just a stress  reducer,
producing endorphins in the brain to give that feel-good sense, it  helps us
keep our muscles toned, helps us retain balance and movement and  definitely
gives a sense of achievement to the ones that keep it up.  John  wrote a book,
Living Well, Running Hard that inspired me to get back on my  bicycle and add
activities that build muscle (yes, even Parkinsonians can build  muscle even
as it is a muscle wasting disease) -

I participate in the Long Beach and LA bicycle marathons, riding at least
every other day to keep in shape, sometimes just a few miles, sometimes  long
distances.  I get on the bike even on days when my legs feel like they  don't
even want to get out of bed, and it is easier to ride than to walk. I see  a
movement specialist doctor who listens to me and is willing to allow me to
experiment with my medications so that when I feel the stiffness come on early  and
even when it is not time to take the drug, I do and then it usually  gets me
through the rough spots and I am able to take the next dose a little  later
instead.

I travel, and since all of my family live in Europe except my kids who live
here - I go to Europe at least once a year. I just have to get up in those
crowded planes and walk around a lot and wish I were wealthy so I could walk
around with a little more space in first class!!

The cramps are my main problem - especially mornings they are there just as
faithfully as daylight comes.
I am almost afraid of breaking bones in my feet as I try to 'walk out the
cramps' on feet that twist every which way. But then they are gone, just as
suddenly as they came and I get to morning chores, breakfast, cleaning up,
moving lawns, chopping wood for the fireplace, gardening, a morning bike ride,
meeting or corresponding with friends, taking the dog to the dogpark for
socialization/exercise

Without the drugs, I realize I could not live fully.  I was  hospitalized for
12 days for a twisted small intestine this past summer, and  could take
nothing by mouth, so I was without any P-meds as well, because there  is no
intravenous drugs for P yet.  The cramps were relentless, the walking  around the
nursing station was an enormous effort. Again, I could not write,  brushing my
teeth was a chore, and ,just shifting my body positions in  bed became very
difficult. Back on the medications, I am back to where  I was again.

So, yes, even as the drug companies are most certainly to blame for the  slow
progress in finding  a cure for the P, because they make so much money  on
controlling symptoms with all these medications, so why should they help
finance research with their profits?? ( Requip costs over $400 dollars a month
without insurance!). So imagine the drug companies' losses if a cure was  suddenly
found for the P today!!

I hope for a cure.  But in the meantime, why should I not try to  live as
full and active a life as the medications allow me?

So take the drugs and feel the difference! Some days you will feel so  normal
that you think you no  longer have the P.  Other days the  medications don't
seem to do a thing for you or you get that 'between doses' low  where you
don't seem to be able to even move your feet.  It may take an  hour before they
kick in, especially if you take your dose late.

But thank God for the good days and accept the bad ones, just keep moving
and get in touch with other Parkinsonians to keep a perspective on your
situation.  It may seem bad, but it could be worse.  I get back to  John Ball who has
awful tremors and dyskenisea and bad cramping at times, but he  keeps going
and even heads a Team Parkinsons organization with his wife.  I  do not have
the tremors and shaking, and I count my blessings  every day I  don't feel the
effects of the disease, I have not suffered the loss of balance a  lot of
people tell me about, nor the total inability to put one foot in front of  the
other (freezing).  I imagine all of these things may eventually happen  to me, but
I am 8 years into the diagnosis and today, for now, I am not losing  sleep,
nor will I allow depression to creep over me like a wet fog, attempting  to rob
me of my tomorrows.  I live today, I make plans for the future, and  as I
read your questions I felt compelled to answer you because there is more to  life
than Parkinsons disease.

Sincerely,

Monika



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