This is Rita.......and I will answer the first part of a message,  which was 
directed to me last week.. (I had kids/grandkids visiting, and I am  just 
catching up on my email of the past 10 or so days).  The question was  in response 
to my comments re: low dose (10//100 Sinemet)....I have tried here  to give 
more of an overview of my PD history of the past 15 or so years.
 
My PD progression has been slow.  I have more problems with  rigidity.  I do 
not have dyskinesia.  I do have tremor in all 4 limbs  now.......right side 
was first. I was finally dx in my early 40's........after  seeing various 
neurologists in various parts of the country where we were living  during that 9 
years.  I am now 64.  I have definite decrease in fine  motor skills, but I am 
still able to sew with my sewing machine and I am still  able to cook for my 
family/guests.
 
I was on the Cabergoline (cabasar in UK and Europe, I believe) clinical  
trial in the US for 44 months (mid 90's).  Following that I was on Mirapex  for 
about 10 months.  I have had liver enzyme irregularities since the  cabergoline 
trial and my primary care physician suggested that I not do any more  trials.
 
I was on Eldepryl and Sinemet in the early days after my dx.  Eldepryl  
definitely made my symptoms much worse.....edema in the legs, very poor  gait.
 
Cabergoline and Mirapex both resulted in improved mood.....acted as an  
antidepressant probably (I say this, not a quote from my neurologist).  I  suffered 
from compulsive shopping (thrifts and fabric stores).  I suffered  sleep 
attacks.  I quit mirapex cold turkey when I fell asleep in the cereal  aisle at 
the grocery store.  I had previously fallen asleep behind the  wheel of my car 
at traffic lights.  I definitely do not recommend stopping  any drug this 
way.....but I reached a point of desperation and fear.
 
I am now, and have been for several years, on a regime of 10/100's  (Sinemet) 
every 3 hours when awake.  I can move this to every 2 1/2 hours  or so if I 
am out in public/have guests in my home/have grandkids visiting  etc.  I DO NOT 
exceed more than 7 pills of 10/100 in any 24 hour  period.  I do take a nap 
almost every day.  I stop frequently to just  rest during the day.  I cannot 
walk more than about 2 blocks without  sitting to rest.  I do water exercises,  
but I am unable to keep up  with even a low level water aerobics class.  I 
have loss of strength.   I have sleep disruption issues.
 
I have never had dyskinesia as a result of PD meds.  I do not believe  this 
is a result of a drug regime, but rather the form of PD which I have.
 
I do experience depression and fatigue (probably my most frustrating  
symptoms)
 
I do experience problems with heat/activity.......I have dimming of vision  
in my left eye when I am too active (read Uhthoff symptom in a web search  this 
is more common in MS patients but does have some incidences reported with  
other neuro diseases.)
 
I have increase of symptoms.......slowness of gait, general 'heavy'  feeling, 
loss of fine motor skills in bright sunlight, some theater  lighting.  At one 
time  I tried to pursue more answers for  these symptoms, but for fear of 
being labeled a complete idiot by the  neurologists, I simply shut up about it 
rather than continue with that line of  questions and the lack of curiosity on 
the part of the medical community to  pursue answers or support for me.  All of 
those symptoms that existed in  the mid 90's still exist to this day, and I 
never mention them in a neuro visit  anymore.
 
As I stated earlier, I do not believe my slow progression has anything to  do 
with my med regime.  I do believe there are many variations on PD in  people 
and I am one of the fortunate ones.    (Did you know that  Muscular Dystrophy 
is an umbrella term for about 50 different  diseases?   One of our grandsons 
has a rare form of MD, and it was  only after his dx that we learned of this 
umbrella grouping of  diseases..........and I really believe that some day 
Parkinsons will be  described in a similar fashion.  I am pleased to see the 
scientific  community moving in this direction.).
 
 







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