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Her is a book recently written by my father.  Comments are welcome by
snail mail or through me via e-mail at [log in to unmask]  Please
forgive the numerous spelling errors and bad text output as he is a PD
patient and has trouble with a keyboard.
 
 
 
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This E-text book was written by Bill Brenner of 5 Cole Street in Hampton,=
 NH =
 
03842.  Hw would be interested in hearing your comments by mail.  While h=
e makes
it freely available to the community of Parkinson's patients and their
families, he retains all copyrights. Printed copies are available.
                     =
 
                           ACKNOWLEDGEMENTS
 
 
                        =
 
           In a book such as this it is difficult to separate the emotion=
al
 
      aspects from the mere facts as they were in reality. There were con=
=A9 =
 
 
      frontations between and within the families of relatives and in-law=
s
 
      which led to much bickering and I was in a state of limbo for a
 =
 
      significant period of the fray. My health care was somewhat debatab=
le
 
      because of the influence of medicine which bore heavily on my perso=
nal
 
      makeup.I begin these credits after acknowledging a professional job=
 
 
      well done by the doctors,nurses, and staff of the University      =
 
      =
 
      Medical Center.
 
                   Upon leaving the center for the first time, I was not =
quite
 
      at the stage I am now enjoying, so much credit must be given my mot=
her
 
      who welcomed her son back after much turmoil. It goes without sayin=
g,
,
      to her I dedicate this book which is my payment for her love and tr=
ust
 
      throughout the seven years remaining in her life. Godspeed !!!     =
   =
 
                                                                     =
 
 
         (  MAY THE FORCES OF THE UNIVERSE BE WITH YOU ALWAYS ! }    =
 
 
 
           I wish to thank MS.Thelma Mosher whose support and patience
      -------------------------------------------------------------------=
-
      as a caregiver guided me through some tenous moments during this
     ------------------------------------------------------------------
      period. Also to my brother Al who provided the intellectual stimulu=
s
 
      which kept my mind from becomming 3lbs. of mush. To the friends of =
the
 =
 
      " Anchorage"  who displayed a kindred spirit: Ann Justin, Marge and=
 
 
     Jack Grady, Hazel Clifford , and other people in the neighborhood wh=
o =
 
 
     were generous with their time. To those contributors remotely locate=
d
 
     who gave me support and advice : my brother Peter,my sons Gregory,
 
     Chris and their mother Norma, to Helen Brown  and the Brown family. =
                  =
 
                                                 =
 
 
 
 
 
                 Hey    Mister,    you   walk   funny !
                              =
 
 
 
 
 
 
 
 
                                      by bill Brenner
 
 
 
 
            Upon leaving the center for the first time, I was not quite a=
t
 the stage I am now enjoying, so much credit must be given my mother who
 welcomed her son back after much turmoil. It goes without saying, to her=
 
 I dedicate this book which is my payment for her love and trust througho=
ut
 the seven years remaining in her life. Godspeed !!! =
 
 
 
 
                         INTRODUCTION
 
 
 
       The motivation for this book was a long time in the making-only
 
   after surviving a drug holiday in 1985 did I or anyone else suggest
 
   a notion to attempt a book on the subject.There is no one better
 
   qualified to sound off about a disease than one like myself who
 
   has experienced the humiliating and  dibilitating effects over the
 
   last twenty- five years.My professional experience as an Electrical
 
   Engineer introduced me to many and varied challenges of a scientific
 
   nature but these challenges are insignificant when compared to the
                                       =
 
   suffering entailed by those who face a daily challenge of just being
 
   able to get oneself out of bed,dress,and fix a meal without assist-
 
   ance or by means of a prop ( aid ).As I sit here writing this intro-
 
   duction,I harbor the ever present fear of locking up or what is com-
 
   monly referred to as freezing - in fact that just what happened as I
 
   was about to finish this sentence the medicine in my body dissi-
 
   pated and I am writing the completion of this  sentence the following
 
   day.
 
 
 
          It is not sympathy I am trying to gain by the writing of this
 =
 
   book - sympathy doesn't buy any bread ! I believe most people with
 
   a disability shy away from exposure to overt signs of affection for
 
   their affliction.What I hope to accomplish in the following is an
 
   understanding of the disease, the outward signs of the illness,the
 
   varied types of medicine which combat the disease-what you as an
 
   outsider not having Parkinson's can  do when you cross paths with a
 
   sufferer and a general education on the subject which you might
 
   be afflicted with later in life or someone close to you might have.
 
   I recently saw a figure which said that there were about 43 million
 
   people in the U.S.A. with the disease - a number which surprised
 
   me.  As the averagee age of the population becomes older the
 
   percentage of the population with P.D will increase - there is yet
 
   no cure and I believe what will occur is that the medicine will
 
   get better but you will always have to contend with drugs which
 
   alleviate the effects.
 
   =
 
 
          Although P.D is more common in the older citizens( over 60 year=
s)
 
   some people fall prey to the disease early in life even in their
 
   teens.The mind is usually not impaired, so as common with many chronic=
 
 
   illnesses  the problem becomes - what are we as responsible
   =
 
   people going to do about this usually wasted potential? It's a
 
   dilemma which staggers the imagination.Even a national health
 
   program however comprehensive would more than likey not cover the
 
   outstanding cost of the many types of medicine.I would the find the
 
   discomfort factor excruciatingly diffcult to deal with were it not
 
   for the miracle of modern medicine- it boggles my mind to think there
 
   are people out there who can't afford the medicine and continue to
 
   suffer without relief.To those who are uncaring of this travesty
 
 
 
 
 
   I say ( Hemingway ) : For whom the bells toll - they toll for thee!
 
 
      =
 
 
 
                             CHAPTER I
 
                           THE BEGINNINGS
 
 
          As this chapter is being  written , I am 60 years old and with =
     =
 
  =
 
     little doubt I and my doctors believe well into the throes of Parkin=
son's
 
     Disease.  My illness was first diagnosed as PD ( circa MAY 1970 ) wh=
en
 =
 
     I saw a doctor (GP) complaining about a shaky right hand. This was m=
y
 =
 
     first introduction to the disease.The outward signs of PD can be
 
     seen in my case,with hindsight, much earlier than I apparently could=
 
 
     foresee. A few early incidents are recalled which I believe are rele=
vant.
 
     =
 
         I recall one Halloween night my mother lent me some clothes for =
a
 
     costume, amongst the items were a pair of earrings which looked expe=
nsive
 
     to a child of my age( about 10 or less ). As luck would have it, I
 
     lost one of the earrings in my travels and to my chagrin had to face=
 up =
 
 
     to my mother. I was shaking unnaturally and uncontrollably and the f=
irst
 
     thing she said to me " Why are you shaking so much ? ".  After relay=
ing
                                  ..
     my unfortunate tale she said " The earrings were worthless anyway". =
 
         =
 
         =
 
          During my freshman year of college ( eighteen years old ) tried=
 out
 
      out for the track team and as a qualifying stint was asked by  coac=
h
 
      to run a few laps around the gymnasium floor - which I proceeded to=
 
          =
 
      do.  After completing the laps, the coach said to me " Why do you s=
lap                =
 
    =
 
      the floor so hard with your right foot". No response from me.
                                    =
 
 
 
 
 
 
     =
 
 
         Once I was certain of my affliction , I tended to watch for some=
 
     =
 
     signposts along the way - I disovered some old home ( circa 1969)  =
 
 
     movies of the children. I observed in one film clip that upon =
 
 
     walking  my right arm  did not swing back and forth - a common  test=
 
 
     usually performed by your neurologist. The abnormal walk is on of th=
e
 
     early indications of a neurological problem.
 
 
          By the mid-seventies ( around 1975 ,age 41 ),I was being
 
     treated with Sinemet for limping in the right leg, stiffness in my
     =
 
     right arm, bending in my right wrist, crimping of my left big toe,
 
     and loss of balance. Could not sleep at night without medication.
 
     The early early eighties were some turbulent times for me culminatin=
g
     =
 
     in a visit to Boston ( AUGUST 85 )- spending three months at B.U Med=
ical
                                                                       =
 
     Center where I underwent a drug holiday - it must have been a su
 
     or I would not be writing this book today. In the summer of " 93 "
 
     my son gave me an old IBM Personal Computer which the family had for=
 
     =
 
     a number of years prior to my move to New Hampshire. I perused
 
     a few files which I had written and fortuitously came across
 
     a few notes written by me the winter of" 85 "- the information was o=
n
 =
 
     a diskette and had a log of the medicine I was taking at that time.
    =
 
     The total  Sinemet  25/ 100 was 1.6 GRAMS  and the total of Parledol=
 
     =
 
     was about 6.0 mg .
 
 
 
     =
 
 
 
     =
 
     =
 
    Statement on effects of Sinemet( 25/ 250 ) combined with Parledol
 
     ( 1985 ) prior to Boston trip
                          =
 
 
    " At dinner I felt sick and remained so throughout the night.  I am  =
                     =
 
      =
 
    constipated all the time and can smell those pills wherever I go. Aft=
er
 
    about an hour's sleep went to hospital and had cast removed from my
 
    ankle broke foot walking down stairs)". =
 
 
 
           Between the years 1984 - 1985  I compiled a total of 5 trips
 
     to the hospital with only slight improvement in my response to
 
     the medicine, the fifth resulting in my being strapped to the bed
 
     in the maximum security room overnight.  The hospital was not prepar=
ed
 
     to handle a patient within my illness as exemplified by one orderly
 
 
 
 
     who screamed at me for not being able to walk up to the desk and tak=
e
 
     my  pill as I done so before.  The doctors were at a loss as to what=
 
 
     to do with me as I rejected an attempt to cut down on the pills
 
     ( sinemet 25/100) because of the suffering it caused and I harbored
 
     the dim hope of being able to go back to work if I could walk and
 
     use my arms for most of the day. I wasn 't sleeping or resting and t=
he
 
     harsh treatment at the hospital had me in a frenzy wherein I had a
 
     difficult time distinguishing between friend or foe.
    =
 
 
 
 
 
 
 
 
            I was sick both mentally and  physically  and after a        =
                        =
 
            =
 
     a  weeks' stay on the fifth trip to the hospital was suspect
 
     of all doctors and hospital personel. I could not return            =
     =
 
     =
 
     home as there weren't people prepared to handle me as I needed   =
 
 
     much care to just survive. At this pivotal point in my life my
 
     family agreed to remove me from the local hospital and to help me ge=
t
 
     to the medical clinic in Boston.
 
     =
 
          I didn't know what was in store for me in Boston but realized
 
    when the nurses kept bringing my pills late, in fact missed a few her=
e
 
 
     and there creating spells of voracious sweating after supper which w=
ere
 
     mitigated only night showers.  I didn't realize I had been in the   =
                                                                        =
 
    =
 
     clinic for more than a month but when the nurse pointed out to me th=
e
 
     entry date in her log. I had many delusions in that time one which n=
ow     =
 
    =
 
     seems a little humorous.
 
 
          The tall metallic linen carriers with the large blue boxes to h=
ouse =
 
           =
 
      the dirty linen which the orderlies pushed around the hallways; I
      =
 
      believd them to be used for carring out the dead bodies so as to   =
   =
 
 
      conceal the identities.  I had spells at times where I could only
 
      feel comfortable by sitting or crawling on the floor. The doctors =
 
      =
 
      ( I believed ) were engaged in applied research on human bodies-
 
 
      something akin to concentration camps during WORLD War II -ironic
 
      im that my father was jEWISH  and I never got to meet any of his =
 
 
      relatives.
    =
 
 
           As you might have suspected a drug holiday is hardly a vacatio=
n
 
     trip, so don't take your bathing suit. Leading up to the drug holida=
y
      =
 
     you are slowly weaned off of pills until your down to zero.  The pil=
l
 
     count was posted on the bulletin board which was visible from my
                   =
 
     bed and the gradual decrease didn't bother me although I was like a
 
     log in the bed- immobile.  The only time the count bothered me
                                                                 =
 
     was when it reached 1/2 sinmet- I thought that the removal of
 
     the last pill implied "it was lights out for me ". I remember my
 
     roommate who had a serious neurological problem from a vehicle
 
     accident saying : " I just look for another sunrise and sunset
 
     each day and thank the Lord I made it through another one".
                                                        =
 
                                                                        =
 
           On  the positive side , accepting the fact that I was much bet=
ter
 
     both physically and mentally upon departure from hospital - I recall=
 
           =
 
     some interesting moments which I endeavor to share with the reader, =
a
 
     so  to speak "COMING BACK FROM THE DEAD".  I never realized the exte=
nt
      =
 
    my illness had developed or how influential the medicine had on my
      =
 
    overall performance. Not only did my limp turn into a overall        =
                                                                     =
 
      =
 
    crippling effect when the medicine wasn't working but my hands were  =
                                                                         =
   =
 
    =
 
    trembling so I couldn't write my signature. My shoes felt like lead
      =
 
    weights so I took them off whenever possible and my right shoe showed=
 
 
    to be worn out much before the left.The transition decay ( performanc=
e
 
    decrease over time ) occurred many years prior to the drug holiday.
 
 
        The physical deterioration was pretty well established by sight =
 
                                                                        =
 
    but the mental damage I could not assess fully.  As alluded to in the=
 
 
    quote about the affects of drugs  in "85 ", not only did I smell the
 
    pills but supposedly smelt strange odors in the house emanating
    =
 
    from perhaps the furnace.I could not hold the cards in a bridge game,=
 
 
    in addition lacked concentration on playing and remembering the
 
    cards played,a steady ringing was ever present in my ears, everything=
 
 
    I tasted from a sandwich  to an apple seemed to have a medicinal tast=
e.
 
    I had wavy spells in my eyes along with stroboscopic( flashing of lig=
ht
 
    like a Disco Hall) effects at times.  All my senses were impaired and=
 
       =
 
    it was primarily in the aftermath of the no pill period I started
 
    the transition rise
                                                                         =
   =
 
 
           If I had a tape recorder it would have helped but I recall
 =
 
     many significant events.In fairness to the supporting cast( all
   =
 
     doctors,nurses,aids ) my condition was not only brought about by the=
 
    =
 
     tremendous intake of medicine but the progressive nature of the     =
  =
 
     =
 
     disease. In trying to combat this disease I slipped into a trap
 
     which can grab even the most diligent of the afflicted.  =
 
 
       =
 
        It is relatively easy to increase the amount of medicine
    =
 
     one takes without noticing any side effects because the interval of =
in=A9
 =
 
     creased dosage is short, but eventually you each a level the human
 
     body cannot tolerate- then your in Trouble ( right here in River Cit=
y -
 
     with a capital" T "  which rhymes with " P " which  stands for "POOL=
")
 
     It is not easy to decrease the quantity of medicine once you've
     =
 
     reached a steady state wherein you feel comfortable
  =
 
 
           Simply backing off one pill ( smallest Sinemet is 100 mg      =
       =
 
           =
 
      might be split in two giving 50 mg ) or 1/2 pill can have significa=
nt
 
      effect on a day-to day basis, it can also be dangerous.I would neve=
r
 
      again try on my own to decrease my medicine without seeking out
 
      a professional and in the care of hospital personnel.You only live
 
      once so you might as well play your trump suit!.
 
 
         I intimated previously, I recall certain events which brought ab=
out
 
     the expression named by me as the transition rise ( increase in
 
     performance over time ).One significant item which was very importan=
t
 
 
     and which was apparent in the Log of the winter of"85 is that at bes=
t
 
     I was getting only two-two hour periods of sleep quite often a
 
     some total of two to three hours of sleep.Sleep deprivation can be
     =
 
     a very insidious thing resulting in unexpected falls, napping while =
                                                                         =
 
    =
 
     your driving and many neurological impairments.  Subsequent to the
 
    drug holiday, I was building up on medicine again but my sleep in    =
                                                                         =
                                                                         =
                                                                         =
 =
 
    =
 
    spite of taking about 250 mg of Sinemet was still sparse.
 
       =
 
           One night at 10:00 pm, I remember being given two sleeping and=
 
 
     75 mg ELAVIL- went  out like a light and was awoke by the interns
 
      of whom were on duty.They looked at me and said " What time is it? =
                                                                  =
 
      =
 
      I looked at the clock on the wall - "It 7 o'clock.  WOW ! "  They s=
aid"
 
      how long did you sleep" ?   My reply " 9 hours". I could hardly bel=
ieve
      =
 
      it.  For the first time in about 15 YEARS  I sustained a sleep of
 
      9 hours.  This turned the corner for me on my road back.
 
           Once I was getting some sleep my recovery was on its way-this =
is
 
      not to say there is any miracle cure for Parkinson's Disease becaus=
e
   =
 
     there isn't;the pills merely give you so many hours of relief which
 
     is a "blessing " in my case. But getting back to statement about
 
     =
 
      "Like Lazarus I rose from the dead " the following episodes  are
 
       recalled. I could see the parking garage from my bedroom window
 
       so I was aware of it yet couldn't hear anything resembling car noi=
se.
 
       One morning as I was eating the ringing had decreased and I distin=
ctly
       =
 
       heard the resonating sound of a car in the parking lot.
 
 
            One Friday night while I was reading in bed,I could smell the=
 
                                          =
 
      intoxicating aroma of corn popping. When the nurse came by to check=
 me
 
      I said " Your making popcorn tonight - smells pretty good" . She  =
 
  =
 
      replied " We make it every Friday night."  I had been there for ove=
r =
 
 
      two months in the same area and never detected the aroma.
 
=2E
           Food at this point had little taste to it up to this period =
 
 
     in time but I still managed to eat enough to put on weight.One day a=
fter  =
 
 
     lunch during the 14-day holiday, I was involved in physical therapy
 
     when I suddenly stood up from the wheelchair walked across the floor=
 
 
     and shook a friend's hand.  Although I had always responded to
    =
 
     medicine prior to entering the hospital, being on a drug holiday led=
                                                                         =
   =
 
      =
 
     to believe a miracle had resulted and when I returned to my room I
 
     was not in one of my depressed moods and called my mother to tell he=
r
 
     of my ordeal.  Subsequently,  upon talking to the nurse the truth ca=
me
 
     to be - a miracle had not occurred but a pill had been mixed in with=
 my
 
     lunch. This didn't bother me-the temporary high was worth it.
 
 
          The halcyon days of gradually performing better were coming to
 
     a close and I knew the transition to a life without medical assistan=
ts
 
     would take some adjustment but I had survived a breakup of my family=
 ,
 
     a medical retirement from development engineering work, relocation f=
rom
     =
 
     my  friends,and lastly a sequence of hospital visits which ranged fr=
om
 
     being treated like royalty to the scum of the earth. Most of the rem=
ain-
    =
 
     ing chapters will dwell on living outside of the hospital which can
               =
 
     be just as traumatic as you have to schedule your good times ( pills=
 -
 
     working ) to maximize your performance ( ability to eat ,dress etc.)=
 =
 
 
     before the efficacy of the medicine runs down.
                                                            =
 
 
                                                          =
 
                           CHAPTER II
 
                        PILLS, PILLS, PILLS
 
 
        THere seems little doubt that the majority of PD patients respond=
 
 
    to levodopa found in pills ( SINEMET ).The pill Sinemet ( xx / yy ) h=
as
       =
 
    various strengths with the xx standing for the weight of carbidopa an=
d =
 
        =
 
    the yy standing for the weight of the levodopa.The pills come in vari=
ous =
 
 
    sizes (weight) with typical values 1OO, 2OO, and 250 mg ( 0.001 grams=
 ).
 
                                                            =
 
         for example:  Sinmet 25/100   ( comnmon color yellow )
 
         has 25mg of carbidopa  ( c )
 
        and 100 mg of levodopa   ( l )
 
           percentage of c/l =3D 25 %
 
       another example Sinmet 50/200 200mg  CR  ( common color light oran=
ge)
 
           has  50 mg of carbidopa  ( c )
 
           has 200 mg of levodopa   ( l )
 
            percentage of c/l =3D 25 %
 
     CR =3D Controlled reaction
 
     The  c/l RATIO determines generally how quickly and the quantity ofl=
ev-
 
     odopa which gets to the brain. For the older blue pill Sinemet 25/25=
0 it
 
     took in my own case( weight about 165 lbs.)about 20 minutes to"kick =
in"
 
     assuming no onset of flu or variation from normal health. The Sinmwe=
t
  .
     25/100 for my present weight takes about 45 minutes for effectivenes=
s.The
 
     Sinemet 50/200 CR take about 3 hours to peak up in my case.
                                                 =
 
         There is no certainty that the the Sinemet will work any given d=
ay
 
     but it seems to be true that if the pills are not working well one d=
ay
 
    the next day they will. Some of the older versions of the pill are
 
    SINEMET ( 10/100 ) blue pill ,Sinemet ( 25 /250 ) blue pill and
 
    available years ago were stricly Carbidopa pills which supplemented t=
he
 
    blue pills ( c/l =3D 10 % ).At my age and being 25 years into the dis=
ease
 
    the tendency is to take more Sinemet to add the dopamine to the area =
of
 
    the brain where it is lacking but this can backfire on the patient
 
    as once he get over about 1000 mgm ( varies with individuals ). Over =
a
    =
 
    period of about two months you could probably get away with an
 
    increase of about 2 Sinmet 25/100 pills with increased performance;
 
    but after about 6 months the settling  value  might be two large
 
    and the performance  will go down drastically even if you take
 
    more pills. It is very difficult to determine for the individual
 
    or his neurologist the correct level to take but the number 1000 mgs
 
    is  a psychological barrier planted in my  mind. One point is
 
    to be made,if your smelling strange smells day to day or food
 
    which you normally eats tastes sour or taste like medicine your
 
   probably overdosed.                                              =
 
          =
 
                                                   =
 
      I have tabulated my present menu  of daily pills to give one a
 
  comparison between his menu and mine  ( see FIG. 1 )
                                                                    =
 
 
                            FIGURE I
-------------------------------------------------------------------------=
--                                =
 
          Pill Schedule of W. J . Brenner
             Disease - Parkinson's-
-------------------------------------------------------------------------=
---
 
    11-11:30 PM                            1 SINEMET 50/200 CR
-------------------------------------------------------------------------=
----        -------------------------------------------------------------=
------------  =
 
 
    3:00 AM                                1 SINMET 50/200 CR
-------------------------------------------------------------------------=
----
                                        =
 
    6:00 AM                             1-1/2     SINEMET  25/100
 
                                      1- 1/2    Permax   .25 mg
-------------------------------------------------------------------------=
---
=2E                                        1  SINEMET   25/100           =
     =
 
 
  8:30-1O.O AM                           1/2 ELDYPRL  , 1  SYMMETREL( 100=
 MG)
-------------------------------------------------------------------------=
---------------------------------------------------------
 
  12:00 PM                               1 PERMAX, 1 SINEMET  25/100     =
                                                      1 SINEMET  100 MG
-------------------------------------------------------------------------=
--
 
  2:00 PM                                1 /2 ELDYPRL, 1 SINEMET 25/100
 
---------------------------------------------------------------------
 
  4:00 PM                            1-1/2  PERMAX .25 MG ,1 SINEMET 25/1=
00
------------------------------------------------------------=A9=A9=A9=A9=A9=
=A9=A9=A9=A9=A9=A9=A9=A9=A9=A9   =
 
                                             1 SINEMET 25/100 CR
 
  5:30 PM                                    1/2 SINMET 25/100
-------------------------------------------------------------------------=
--
7:30-7:45  PM                        2-25 MG AMYTRPLN, 1 -ATIVAN 10 MG
  =
 
                                             1 PERMAX .25 MG
-------------------------------------------------------------------------=
----
 
 
        By now you can see why the chapter is so named. Not being a
 
     neurologist,I won't dabble in the usual language for expressing
 
     the type of pill and its reaction in the stem of the brain - "I NEVE=
R
    =
 
     PROMISED YOU A ROSE GARDEN ". I just reflect the results as seen
 
     through the eyes of a patient - devoid of any experience in the medi=
cal
 
     field.These are not the only types of pills available for treatment =
of
 
     PD  but I rejected some type medicine because they were for cures fo=
r
 
     symtoms of less importance.It should be emphasized that the human bo=
dy in
 
     time becomes less sensitive to many drugs and the overall response o=
f
 =
 
     the individual lessens- this is perhaps the time to try one of the  =
 =
 
 =
 
    other types of medicine . A list of the drugs with some comments
 
    is as follows:
 
         Sinemet  50 / 200  CR -This is a pretty good wallop and if it
 
             is not controlled reaction ( CR ) you'd better have a little=
 
 
             ice cream with it.I can handle 200 mg of CR on practically
 
             an empty stomach because the pill  is so slow getting
 
             to the blood stream( weight 185 lbs).It is a pretty good
 
             pill to slept on but you'd take perhaps a half a Sinemet 25/=
100
 
             100 in between two CR 200 to allow yourself a time for
 
             a visit to the bathroom .The high in taking CR is not
 
             always high enough to complete necessary functions.
 
           Sinmet  25/100  -     This is the most beneficial of all
 
             the pills I take .Whenever I get to an extreme condition whe=
re
 
             I am fearful of castastrophe ( too stiff to move at all ) I
 
             take 1/2 of this pill.One morning after completing my duties=
 
 
             in the bathroom,I suddenly stiffened up and eventually found=
 
 
             myself on the floor face down.I called for my help and was  =
   =
 
 
             given  1/2 a pill ( my instructions )and was assisted to
 
             the stool.Within a half an hour from thence,I was up and
 
             walking.These sudden bouts with " freezing in place" can
 
             be brought on by merely taking a hot shower and once expos-
 
             ed to the room temperature you lock- up.
 
 
          Eldepryl- Generally, when you take a new pill for the first tim=
e
          '
          the body is more sensitive to it. This appeared to be the case =
 
          =
 
       here. Hearsay would classify it similiar to an LSD high as =
 
          =
 
       within about a half-hour the room seemed brighter and my mood =
 
        =
 
      swung from gloomy to euphoric. I was very reckless and so overcharg=
ed  =
 
 
     I walked to the local store a half-dozen times. It seems as though w=
hen
 
     walking I was using leg muscles which hadn't been activated for
 
     many years. After after continued use of the pill with time the
 
     effect diminished and taking two of the pills ( maximum is two )
 
     caused increased shaking in my hands - not being able to pull
 
     up my pants. In conjunction with tbe other medicines I believe it
 
     still is a good drug to supplement the Sinemet.
 
          Symmetrel ( 100 mg ) - This is a pill originally developed
 
            for combating the flu and I believe it does because
 
            since taking it ( MAXIMUM 2 TABLETS ) I can't recall
 
            ever having the flu  once I started the pill.Even though
 
            many neurologists don't have much faith in it's contribut-
 
            ion I have always gone back to it in spite of being weened
 
            off it twice during hospital visits.I remember one prom-
 
            inant midwestern neurologist words " Don't quite the
 
            symmetrel it makes the connections ".
 
 
         Permax (.25 mg ) - When I first started using this drug I
 
            had just entered the hospital complaining of significant
 
            down time.The introduction  of this medicine in conjuction
 
            with Sinemet at first greatly enhanced my " on " time
 
        although like most medicine it wanes with time.  Overall
 
            I would do poorer without it.
 
 
          Elavil ( 25 mg ) - This was the wonder pill which recaptured my=
 
 
            my sleep during the hospital  in "85". It is a small green pi=
ll
 
            and can be quite harsh on the throat if you don't swallow
 
            it quickley.It contines to help my feet from bending and
 
            quivering allowing me to get some sleep ( approximately
 
            two hours ).
 
           Ativan - A small white sleeping pill which is taken before
 
            bedtime.It can only be used in small quantities.
                                                 =
 
       The cost of taking all these pills is substantial as well as being=
 
 
       a nuisance to contend with the taking of the pills throughout the
 
       day. In Figure II is he breakdown of the cost of the pills per
 
       each interval :
 
 
         Pills/day    S 25/100  - 7    S 50/200 - 2   EL .25 - 1
 
 
 
          PMX - 4     SYM -1      ELV -2    ATV -1
 
 
 
         Formulas for FIG.II
 
 
 
              *  MULTIPLICATION                       #  =3D NUMBER
 
 
 
          DAYLY   =3D COST/PILL  *  ## OF PILLS /DAY
 
     =
 
          MONTHLY =3D  DAYLY  *  30
 
 
          YEARLY  =3D  MONTHLY  *  12
     =
 
 
 
                                 FIGURE II
 
                        COST OF MEDICINE ( 1994 )
 
 
  NAME                RETAIL    QTY     COST/PILL  DAYLY    MON.    YEAR
 
 
    SINEMET 25/100   $ 59.85    100       60 c  $  4.20   $ 126. $  1512
 
    SINEMET  50/200  $112.69    100   $ 1.12   $  2.24   $  67.20 $ 806.4=
 
 
    ELDRYPL ( 5 MG ) $ 58.55     30    $ 1.95   $ 1.95   $ 58.50  $ 702.O=
 
 
    =
 
    PERMAX ( .25 MG ) $ 66.21   100    $  67 c   $2.08   $ 79.2   $ 950.4=
 
 
    SYMTRL ( 100 MG ) $ 24.85   100   $ 25 c     25 c    $ 14.4   $  90.0=
 
 
    ELVL ( 25MG )      $ 3.99    60     67 c    $ 1.44   $  4.2    $ 50.4=
 
 
    ATVN ( 1 MG )    $   4.96    30     17 c      17 c   $  5.10  $  61.2=
 
-------------------------------------------------------------------------=
----
                                                $ 11.63  $ 347.22  $ 3972=
=2E5
 
 
         One might question the exhaustive quantity of pills taken but I =
can
 
     can justify each and every one consumed. I am a slave to the clock a=
s
   =
 
 
     most people with chronic ailments are -if I miss a pill my body lets=
 
 
     me know about it.The timing of the pills is important although many
 
     people snub their noses at the thought of constantly taking pills. I=
 
 
     recall talking to an older woman at an elder care center.She suffere=
d
 
     from a mumber of ailments heart condition , PD, and other conditions=
 
 
     generally associated  with age.She held in her hand a fistfull of pi=
lls
 
     and was about to take them when I questioned her about the quantity.=
 
 
         She explained that this one was for PD,another for heart conditi=
ons
 
     and so forth so I said " How do you know whether any one pill does t=
he
 
     job its suppoed to if you take  them all simultaneously? ". She repl=
ied
     =
 
"     I can't   mbe bothered  with taking pills all day so I take them al=
l
 
     at once ."
    =
 
          The point to be made from the anecdote is that if you are goimg=
 
 
     to battle an  illness you  must experiment,in conjunction with the
 
     doctor's orders, on the medicine to achieve the optimum response. Yo=
u
 
     should read everything you can decipher ( don't bother with articles=
 
 
     written for neurologists) and evaluate it relative to your own
 
     situation. When your prescribed a new medicine if the vial contains
 
     directions read them if you can - remember it's your body and the
     =
 
     only one you'll ever have. Also with a vial of pills comes instructi=
ons
 
     on various factors which you should be aware- do take the time to re=
ad
 
     these as you might get somes tips which will ease your burden.Your
 
     local pharmacist be a ready source of information so use the infor-
 
     ion which can be yours for no greater price.
 
 
       Your pills are vital to you- the long sufferers of PD and I would
 
     recommend you  carry the pills around with you in a plastic canister=
 
     =
 
     around your neck. This way you won't be facing the thought "Oh God,
 
     I forgot my pills and the pharmacy is closed today or not readily ac=
-
 
     essable ! In my case ,I can go so to speak " off  " in a matter of
 
     seconds and am not capable of even holding the water to my lips with=
-
 
     out spilling it. There have been times where desparation has set in =
and
 
  =
 
     I' ve taken the pill with nothing to wash it down. I recall going to=
 
 
     bed one nite with a symmetrel capsule stuck in my throat and when I
 
     awoke it apparently dissolved in my throat and went down the hatch.
 
 
         One other tip for surviving the perils associated with  PD - cou=
nt
 
     and lay out the pills you will be using for that day.Either carry th=
em
         =
 
 
      aAround your neck as mentioned or put them in a container away from=
 the
 
     grasp of little hands.These pills are very strong and could easily
 
     kill a small child if taken like they were M & M candy. Be sure to
 
     take your pills on time and if after downing the pill you are not su=
re
 
     you took it go back and count how many pills you have left -if the
 
     count indicates you've taken the pill assume its gone and be a littl=
e
 =
 
     careful during the next interval ( holding a 1/2 pill in reserve
 
     should you have made a mistake). Should  you lock -up and start
 
     oscillating ( skaking ) severely, take the 1/2 half pill.I reiterate=
 -
 
     know where you are with respect to the pill schedule at all times
 
     and be sure you`ve got a spare with you in case of an emergency.
 
         Let's refer back to FIG.II labeled "Cost of Medicine".It is
 
     unfortunate that the cost of pills has to be dealt with when it come=
s to
 
     your health but the pharmacist doesn't give away the medicine.Cost i=
s
 
     always a factor in every endeavor The first pill to be investigated
 
     is the Sinemet 25/100 since it is the most costly for the patient
 
           arly basis.It's retail value is about  60c/pill and to
 
     my recollection it was about the same price close to twenty years ag=
o.
 
     The next pill be scrutinized is the Sinemet 25/200 ;the only  commen=
t
 
     I shall make is that the price of the 200 MG CR is about twice that
 
     of the 100 MG Regular although the ingredients and manufacturing cos=
ts
    =
 
     are probably the same. The worst travesty of the cost of PD medicine=
 
 
     and it now being sold at the ( Hungary ) pharmaceutical stores at
    =
 
     the equivalent value of 9 cents - the retail price in the U.S. is
 
     about $ 1.95. If this situation existed in a federally funded progra=
m
 
     I would recomnend it for the "Golden Fleece Award ".
 
         In the semiconductor ( devices which go into your TVs' ) industr=
y
 
     when a chip is made for the first time the retail cost must reflect =
the
 
     operating costs ( design,etc.) to build the initial  units ( chip
 
     might cost ## dollars per week depending on complexity );
 
    whereas when the chip is well developed and the only thing standing i=
n
 
    the way is the production costs( personal training,volume cost per it=
em)
 
    When the chips are made in millions per week the price comes way
 
    down perhaps in value to # cents range.The intensity of the competiti=
on
 
      has lead to the failure of a number of semiconductor companies-why
 
      isn't the same true for the Pharmaceutical Companies?
 
                                                            =
 
 
                                                          =
 
                           CHAPTER II
 
                        PILLS, PILLS, PILLS
 
 
        THere seems little doubt that the majority of PD patients respond=
 
 
    to levodopa found in pills ( SINEMET ).The pill Sinemet ( xx / yy ) h=
as
       =
 
    various strengths with the xx standing for the weight of carbidopa an=
d =
 
        =
 
    the yy standing for the weight of the levodopa.The pills come in vari=
ous =
 
 
    sizes (weight) with typical values 1OO, 2OO, and 250 mg ( 0.001 grams=
 ).
 
                                                            =
 
         for example:  Sinmet 25/100   ( comnmon color yellow )
 
         has 25mg of carbidopa  ( c )
 
        and 100 mg of levodopa   ( l )
 
           percentage of c/l =3D 25 %
 
       another example Sinmet 50/200 200mg  CR  ( common color light oran=
ge)
 
           has  50 mg of carbidopa  ( c )
 
           has 200 mg of levodopa   ( l )
 
            percentage of c/l =3D 25 %
 
     CR =3D Controlled reaction
 
     The  c/l RATIO determines generally how quickly and the quantity ofl=
ev-
 
     odopa which gets to the brain. For the older blue pill Sinemet 25/25=
0 it
 
     took in my own case( weight about 165 lbs.)about 20 minutes to"kick =
in"
 
     assuming no onset of flu or variation from normal health. The Sinmwe=
t
  .
     25/100 for my present weight takes about 45 minutes for effectivenes=
s.The
 
     Sinemet 50/200 CR take about 3 hours to peak up in my case.
                =
 
         There is no certainty that the the Sinemet will work any given d=
ay
 
     but it seems to be true that if the pills are not working well one d=
ay
 
    the next day they will. Some of the older versions of the pill are
 
    SINEMET ( 10/100 ) blue pill ,Sinemet ( 25 /250 ) blue pill and
 
    available years ago were stricly Carbidopa pills which supplemented t=
he
 
    blue pills ( c/l =3D 10 % ).At my age and being 25 years into the dis=
ease
 
    the tendency is to take more Sinemet to add the dopamine to the area =
of
 
    the brain where it is lacking but this can backfire on the patient
 
    as once he get over about 1000 mgm ( varies with individuals ). Over =
a
    =
 
    period of about two months you could probably get away with an
 
    increase of about 2 Sinmet 25/100 pills with increased performance;
 
    but after about 6 months the settling  value  might be two large
 
    and the performance  will go down drastically even if you take
 
    more pills. It is very difficult to determine for the individual
 
    or his neurologist the correct level to take but the number 1000 mgs
 
    is  a psychological barrier planted in my  mind. One point is
 
    to be made,if your smelling strange smells day to day or food
 
    which you normally eats tastes sour or taste like medicine your
 
   probably overdosed.                                              =
 
 
 
      I have tabulated my present menu  of daily pills to give one a
 
  comparison between his menu and mine  ( see FIG. 1 )
                                                                    =
 
 
                            FIGURE I
-------------------------------------------------------------------------=
--                                =
 
          Pill Schedule of W. J . Brenner
             Disease - Parkinson's-
-------------------------------------------------------------------------=
---
 
    11-11:30 PM                            1 SINEMET 50/200 CR
-------------------------------------------------------------------------=
----        -------------------------------------------------------------=
------------  =
 
 
    3:00 AM                                1 SINMET 50/200 CR
-------------------------------------------------------------------------=
----
                                        =
 
    6:00 AM                             1-1/2     SINEMET  25/100
 
                                      1- 1/2    Permax   .25 mg
-------------------------------------------------------------------------=
---
=2E                                        1  SINEMET   25/100           =
     =
 
 
  8:30-1O.O AM                           1/2 ELDYPRL  , 1  SYMMETREL( 100=
 MG)
-------------------------------------------------------------------------=
---------------------------------------------------------
 
  12:00 PM                               1 PERMAX, 1 SINEMET  25/100     =
                                                      1 SINEMET  100 MG
-------------------------------------------------------------------------=
--
 
  2:00 PM                                1 /2 ELDYPRL, 1 SINEMET 25/100
 
---------------------------------------------------------------------
 
  4:00 PM                            1-1/2  PERMAX .25 MG ,1 SINEMET 25/1=
00
------------------------------------------------------------=A9=A9=A9=A9=A9=
=A9=A9=A9=A9=A9=A9=A9=A9=A9=A9   =
 
                                             1 SINEMET 25/100 CR
 
  5:30 PM                                    1/2 SINMET 25/100
-------------------------------------------------------------------------=
--
7:30-7:45  PM                        2-25 MG AMYTRPLN, 1 -ATIVAN 10 MG
  =
 
                                             1 PERMAX .25 MG
-------------------------------------------------------------------------=
----
 
 
        By now you can see why the chapter is so named. Not being a
 
     neurologist,I won't dabble in the usual language for expressing
 
     the type of pill and its reaction in the stem of the brain - "I NEVE=
R
    =
 
     PROMISED YOU A ROSE GARDEN ". I just reflect the results as seen
 
     through the eyes of a patient - devoid of any experience in the medi=
cal
 
     field.These are not the only types of pills available for treatment =
of
 
     PD  but I rejected some type medicine because they were for cures fo=
r
 
     symtoms of less importance.It should be emphasized that the human bo=
dy in
 
     time becomes less sensitive to many drugs and the overall response o=
f
 =
 
     the individual lessens- this is perhaps the time to try one of the  =
 =
 
            =
 
    other types of medicine . A list of the drugs with some comments
 
    is as follows:
 
         Sinemet  50 / 200  CR -This is a pretty good wallop and if it
 
             is not controlled reaction ( CR ) you'd better have a little=
 
 
             ice cream with it.I can handle 200 mg of CR on practically
 
             an empty stomach because the pill  is so slow getting
 
             to the blood stream( weight 185 lbs).It is a pretty good
 
             pill to slept on but you'd take perhaps a half a Sinemet 25/=
100
 
             100 in between two CR 200 to allow yourself a time for
 
             a visit to the bathroom .The high in taking CR is not
 
             always high enough to complete necessary functions.
 
 
 
           Sinmet  25/100  -     This is the most beneficial of all
 
             the pills I take .Whenever I get to an extreme condition whe=
re
 
             I am fearful of castastrophe ( too stiff to move at all ) I
 
             take 1/2 of this pill.One morning after completing my duties=
 
 
             in the bathroom,I suddenly stiffened up and eventually found=
 
 
             myself on the floor face down.I called for my help and was  =
   =
 
 
             given  1/2 a pill ( my instructions )and was assisted to
 
             the stool.Within a half an hour from thence,I was up and
 
             walking.These sudden bouts with " freezing in place" can
 
             be brought on by merely taking a hot shower and once expos-
 
             ed to the room temperature you lock- up.
 
 
          Eldepryl- Generally, when you take a new pill for the first tim=
e
          '
          the body is more sensitive to it. This appeared to be the case =
 
          =
 
       here. Hearsay would classify it similiar to an LSD high as =
 
          =
 
       within about a half-hour the room seemed brighter and my mood =
 
        =
 
      swung from gloomy to euphoric. I was very reckless and so overcharg=
ed  =
 
 
     I walked to the local store a half-dozen times. It seems as though w=
hen
 
     walking I was using leg muscles which hadn't been activated for
 
     many years. After after continued use of the pill with time the
 
     effect diminished and taking two of the pills ( maximum is two )
 
     caused increased shaking in my hands - not being able to pull
 
     up my pants. In conjunction with tbe other medicines I believe it
 
     still is a good drug to supplement the Sinemet.
 
          Symmetrel ( 100 mg ) - This is a pill originally developed
 
            for combating the flu and I believe it does because
 
            since taking it ( MAXIMUM 2 TABLETS ) I can't recall
 
            ever having the flu  once I started the pill.Even though
 
            many neurologists don't have much faith in it's contribut-
 
            ion I have always gone back to it in spite of being weened
 
            off it twice during hospital visits.I remember one prom-
 
            inant midwestern neurologist words " Don't quit the
 
            symmetrel it makes the connections ".
 
 
         Permax (.25 mg ) - When I first started using this drug I
 
            had just entered the hospital complaining of significant
 
            down time.The introduction  of this medicine in conjuction
 
            with Sinemet at first greatly enhanced my " on " time
 
        although like most medicine it wanes with time.  Overall
 
            I would do poorer without it.
 
 
          Elavil ( 25 mg ) - This was the wonder pill which recaptured my=
 
 
            my sleep during the hospital  in "85". It is a small green pi=
ll
 
            and can be quite harsh on the throat if you don't swallow
 
            it quickley.It contines to help my feet from bending and
 
            quivering allowing me to get some sleep ( approximately
 
            two hours ).
 
 
           Ativan - A small white sleeping pill which is taken before
 
            bedtime.It can only be used in small quantities.
                =
 
       The cost of taking all these pills is substantial as well as being=
 
 
       a nuisance to contend with the taking of the pills throughout the
 
       day. In Figure II is he breakdown of the cost of the pills per
 
       each interval :
 
 
         Pills/day    S 25/100  - 7    S 50/200 - 2   EL .25 - 1
 
 
 
          PMX - 4     SYM -1      ELV -2    ATV -1
 
 
 
         Formulas for FIG.II
 
 
 
              *  MULTIPLICATION                       #  =3D NUMBER
 
 
 
          DAYLY   =3D COST/PILL  *  ## OF PILLS /DAY
 
      MONTHLY =3D  DAYLY  *  30
 
 
          YEARLY  =3D  MONTHLY  *  12
     =
 
 
 
                                 FIGURE II
 
                        COST OF MEDICINE ( 1994 )
 
 
  NAME                RETAIL    QTY     COST/PILL  DAYLY    MON.    YEAR
 
 
    SINEMET 25/100   $ 59.85    100       60 c  $  4.20   $ 126. $  1512
 
    SINEMET  50/200  $112.69    100   $ 1.12   $  2.24   $  67.20 $ 806.4=
 
 
    ELDRYPL ( 5 MG ) $ 58.55     30    $ 1.95   $ 1.95   $ 58.50  $ 702.O=
 
 
    =
 
    PERMAX ( .25 MG ) $ 66.21   100    $  67 c   $2.08   $ 79.2   $ 950.4=
 
 
    SYMTRL ( 100 MG ) $ 24.85   100   $ 25 c     25 c    $ 14.4   $  90.0=
 
 
    ELVL ( 25MG )      $ 3.99    60     67 c    $ 1.44   $  4.2    $ 50.4=
 
 
    ATVN ( 1 MG )    $   4.96    30     17 c      17 c   $  5.10  $  61.2=
 
-------------------------------------------------------------------------=
----
                                                $ 11.63  $ 347.22  $ 3972=
=2E5
 
 
         One might question the exhaustive quantity of pills taken but I =
can
 
     can justify each and every one consumed. I am a slave to the clock a=
s
   =
 
     most people with chronic ailments are -if I miss a pill my body lets=
 
 
     me know about it.The timing of the pills is important although many
 
     people snub their noses at the thought of constantly taking pills. I=
 
 
     recall talking to an older woman at an elder care center.She suffere=
d
 
     from a mumber of ailments heart condition , PD, and other conditions=
 
 
     generally associated  with age.She held in her hand a fistfull of pi=
lls
 
     and was about to take them when I questioned her about the quantity.=
 
 
         She explained that this one was for PD,another for heart conditi=
ons
 
     and so forth so I said " How do you know whether any one pill does t=
he
 
     job its suppoed to if you take  them all simultaneously? ". She repl=
ied
     =
 
"     I can't   be bothered  with taking pills all day so I take them all=
 
 
     at once ."
    =
 
          The point to be made from the anecdote is that if you are goimg=
 
 
     to battle an  illness you  must experiment,in conjunction with the
 
     doctor's orders, on the medicine to achieve the optimum response. Yo=
u
 
     should read everything you can decipher ( don't bother with articles=
 
 
     written for neurologists) and evaluate it relative to your own
 
     situation. When your prescribed a new medicine if the vial contains
 
     directions read them if you can - remember it's your body and the
     =
 
     only one you'll ever have. Also with a vial of pills comes instructi=
ons
 
     on various factors which you should be aware- do take the time to re=
ad
 
     these as you might get somes tips which will ease your burden.Your
 
     local pharmacist be a ready source of information so use the infor-
 
     ion which can be yours for no greater price.
 
       Your pills are vital to you- the long sufferers of PD and I would
 
     recommend you  carry the pills around with you in a plastic canister=
 
     =
 
     around your neck. This way you won't be facing the thought "Oh God,
 
     I forgot my pills and the pharmacy is closed today or not readily ac=
-
 
     essable ! In my case ,I can go so to speak " off  " in a matter of
 
     seconds and am not capable of even holding the water to my lips with=
-
 
     out spilling it. There have been times where desparation has set in =
and
 
       I' ve taken the pill with nothing to wash it down. I recall going =
to
 
     bed one nite with a symmetrel capsule stuck in my throat and when I
 
     awoke it apparently dissolved in my throat and went down the hatch.
 
         One other tip for surviving the perils associated with  PD - cou=
nt
 
     and lay out the pills you will be using for that day.Either carry th=
em
         =
 
      aAround your neck as mentioned or put them in a container away from=
 the
 
     grasp of little hands.These pills are very strong and could easily
 
     kill a small child if taken like they were M & M candy. Be sure to
 
     take your pills on time and if after downing the pill you are not su=
re
 
     you took it go back and count how many pills you have left -if the
 
     count indicates you've taken the pill assume its gone and be a littl=
e
 =
 
     careful during the next interval ( holding a 1/2 pill in reserve
 
     should you have made a mistake). Should  you lock -up and start
 
     oscillating ( skaking ) severely, take the 1/2 half pill.I reiterate=
 -
 
     know where you are with respect to the pill schedule at all times
 
     and be sure you`ve got a spare with you in case of an emergency.
 
         Let's refer back to FIG.II labeled "Cost of Medicine".It is
 
     unfortunate that the cost of pills has to be dealt with when it come=
s to
 
     your health but the pharmacist doesn't give away the medicine.Cost i=
s
 
     always a factor in every endeavor The first pill to be investigated
 
     is the Sinemet 25/100 since it is the most costly for the patient
 
           arly basis.It's retail value is about  60c/pill and to
 
     my recollection it was about the same price close to twenty years ag=
o.
 
     The next pill be scrutinized is the Sinemet 25/200 ;the only  commen=
t
 
     I shall make is that the price of the 200 MG CR is about twice that
 
     of the 100 MG Regular although the ingredients and manufacturing cos=
ts
    =
 
     are probably the same. The worst travesty of the cost of PD medicine=
 
 
     and it now being sold at the ( Hungary ) pharmaceutical stores at
    =
 
     the equivalent value of 9 cents - the retail price in the U.S. is
 
     about $ 1.95. If this situation existed in a federally funded progra=
m
 
     I would recomnend it for the "Golden Fleece Award ".
 
 
         In the semiconductor ( devices which go into your TVs' ) industr=
y
 
     when a chip is made for the first time the retail cost must reflect =
the
 
     operating costs ( design,etc.) to build the initial  units ( chip
 
     might cost ## dollars per week depending on complexity );
 
    whereas when the chip is well developed and the only thing standing i=
n
 
    the way is the production costs( personal training,volume cost per it=
em)
 
    When the chips are made in millions per week the price comes way
 
    down perhaps in value to # cents range.The intensity of the competiti=
on
 
      has lead to the failure of a number of semiconductor companies-why
 
      isn't the same true for the Pharmaceutical Companies?
 
 
 
                         CHAPTER IV
 
                      DO'S AND DON'T ( S )
 
 =
 
         As a person having had PD's for a large amount of years I can
 
   relate to others with complaints about the dibilitating effects of
 
   PD or even somewhat with other ailments similar in their manifestation=
s.
 
   People with a lack of understanding of the disease can do a lot of har=
m
 
   to a PD sufferer by intimidation and putting added stress on the victi=
m.
 
   PD it must be remembered is a neuorological disease not a physical
 
   deterioration of the muscles in the body.This chapter will address the=
 
 
   peculiar traits associated with  PD  and the remedy to alleviate the
 
   suffering by educating the public on the subject.Before launching
 
   our statement about the plus and minus of certain characteristics a  =
 
 
   caveat is in order.
 
       Although the props,tricks,pill- menu and the do's and don't's
 
  addressed previously are beneficial in my case,they might not be
 
  as applicable in each case as the individual is unique with his
 
  own parameters of weight ,metabolism and so forth.The suggestions
 
  should be taken in the frame in which they're given -if just one or
 
  two things help out,I'm satisfied-my conscience is clear.
 
        Also most of the techniques are not my invention, over a span
 
   of twenty five years these handy ways to overcome problems have been a=
p-
 
   plied to me with success.It should pointed out there are still many di=
ff-
 
   erent schools of thought on the proper methods to mitigate the sufferi=
ng
 =
 
   encountered by the patient, at least today he/she is not put in a corn=
er =
 
 
   of a mental institution and left to one's own resources.
       =
 
  =
 
        Concommitant with the explosion in technology over the last 25 yr=
s.
 
   has come the MRI ( Magnetic Resonance Interferometer) which takes slid=
es
 
   at various depths of the brain, the CAT scan which gives sort of a map=
 
  =
 
   of the surface and an assortment of new medicines. Data based systems
 
   via the computer has made accessable a plethora of information from al=
l
 
   over the globe. If the patient just hangs in there long enough
 
   a better cure will come.
 
 
          The question repeatedly comes up with regards to exercise as
 
    many health buffs in their eagerness to lend a hand in circumventing
 
    the physical signs of deterioration will recommend many exercises to
 
    follow- which for the majority of the population a routine exercise
 
    program is a plus for the patient.For the long time sufferer of PD
 
    I say " Forget it! " when your in the "off "state.The connections of
 
    nerve centers is just not there so the output you get is a minimal
 
    amount which does little for the patient.I recall an anecdote taken
 
    from one of the periodic issues of a PD society in which at a confere=
nce
 
                                                             =
 
    of neurologists one doctor was expounding the virtues of exercise
 
    for PD patients.One long suffering man in the audience rose and spoke=
 
 
    after receiving the floor and said "Doctor I wish upon you one week o=
f =
 
   =
 
    PD !"
 
 
          I agree wholeheartedly this opinion as I've struggled with it
             =
 
    myself.In the morning I get up early and get in my share of physical
 
    activity of walking with a few neck and arm exercises.The neck exerci=
ses
 
    are mearly a turning of the head both side ways and up and down.It ca=
n
 
    be a little hazardous if you dont watch  your steps.This might not
 
   seem like much but I've exercised in the morning for close to thirty
 
   years and the important thing is to keep a program you can live with.
 
   The mornings are my best times as I have sort of an unrestricted
 
   three hours during which I can map out my day and prepare for any
 
   exigencies.
 
 
 
         Controlling  the food you eat in the form of a diet could well b=
e
 
    a significant factor in your overall performance but this  is a
 
    lifetime commitment and requires somebody such as a spouse to cook  a=
nd
 
    and be on the alert for certain foods which are necessary.The PD
 
    patient hasn't the "on" time to cope wsith a full fledged diet as he
 
    /she must use the good time with other commitments.I've been to many
 
    neurologists over the years and have never had a diet recommended to =
me.
 
    The one thing I can say about a diet is don't drink alcohol.Some of t=
he
 
    drugs used in treating PD warn about alcohol use with the medicine
 
    particularly ELAVIL( AMITRIIPTYLINED ).I recall one visit to my
 
    neurologist in BOSTON,after which my son and I went out to an Italian=
 
 
    restaurant to eat. I new some of the labels on my medicine warned
 
    the user about consumption  of alcohol but I DISREGARDED the warning
 
    as popycock and indulged myself in wine.Everything went hunkydory
 
    up to about 12:00 AM when I awoke from a dead sleep and discovered
 
    that I could not move a muscle - after a waiting period my body
 
    gained control again. Later one day I was reading a newspaper article=
 
 
    alluding to the fact that alcohol and ELAVIL DON'T MIX it can even le=
ad
 
    to death.This was a very sobering statement for me.
 
 
         PD patients essentially have to learn to walk again similar to
 
    when they were a child when the medicine is't working.The patient
 
    has to concentrate on picking up his foot to step as the PD patient
 
    tends to scuff his foot when set in motion.Once in motion he /she
 
    must keep  their mind on what they're doing or an accident can
 
    easily occur.If you are not assisting the patient do not shout or
 
    try to have conversation with the patient or he /she might freeze
 
    up giving the assistant a much heavier load. For prelonged walks the
 
    patient would probably do well to walk behind a medium weight
 
    wheelchair which he /she can push themselves.A PD patient requires
 
    the caregiver to be very understanding and sympathetic with the
 
    patient because although  moving quite slow he is moving the fastest
 
    his/hers body will allow.It is for the caretaker to remember to use
 
    whatever technique possible which utilize the muscle-coodination
 
    of the patient without endangering him/her.
 
 
       The room furniture was not considered a "prop " as such ;but it
 
  should be carefully laid out to accommodate the patient if he/she
 
  spends much time in a partucular place.To a patient,chairs without
 
  arms are about as useful as rocking chairs - get rid of them where
 
  possible.A good steel cafeteria chair with arms is about the best
 
  chair to have around.Although not aesthetically pleasing the firm
 
  arms and legs on the chair are easy to grip and push yourself
 
  out of the chair.
 
 
       If you can't arise out a soft chair and you have somebody to assis=
t
 
  you the following technique might be in order.
 
 
          First-off relax and only let the caregiver assist you.
 
          The  caregiver should stand in front of the seated patient
 
          ( face to face ) and hold hands in a cup fashion .
 
          When the caregiver starts the count the patient-caretaker
 
          should swing their arms to and fro outward from the bodies.
 
          This swing is done three times upon which the caregiver
 
          pulls the patient who upon the count of three must anticipate
 
          the rise from the chair to be successfull.
 
   The method seems difficult but you when you see it done successfully
 
   will be surprised.My mother ( 4'11'',approx . 115 lbs ) did it up
 
   into her eighties.
 
 
 
 
 
                            CHAPTER V
 
 
                      THE PERSONAL TOUCH
 
        The first chapter dealt with more of the struggle I endured while=
 
 
   being over-dosed  with pills while the remaining chapters involved
 
   more objective matters  which explained of some the care needed to han=
dle
 
   the PD patient and numerous other details of daily living subsequent t=
o
 
   the hospital visit ( 85").There appears to be a dichotomy  in the
 
   subject even though  it is more or less in chronological order. There
 
   is a story here which underlies the entire book-I saved the punch
 
   line for the closing chaper.
 
       I recall a conversation with my room-mate in which I was lamenting=
 
 
   about harsh treatment I received at the previous hospital not only
 
   physical but mental. After spending a night looking up at the ceiling
 
   and cursing the people who put me there, the following day I had to en=
dure
 
   other humiliating scenes. When I walked by the receiving desk the
 
   secretary said to me "BILL is suicidal. "  I resented that remark  as
 
   I'm just the opposite  a "survivor".It is true I cursed the doctors
 
   as murderers while being strapped in bed and told to be quiet
 
   but is that sufficient reason  to call a walk-out at about 11:00 am
 
   the next day during which I was left alone in the building for an
 
   interval of time? It should be remembered that I was under stress
 
   with the breakup of my marriage ,not being  able to work
 
   and carring a humongous overdose of medicine leading to my
                                                      =
 
   being labeled by the doctor as a schizophrenic paranoia. An orderly
 
   in passing by me in the hallway said "There goes Mr. mean guy !"
 
   These taunts have been etched in my mind forever. My room-mate
 
   who by the way was an Afro-American said to me " You know Bill if you
 
   holler too loud or too often the next place you go they will either
 
   ignore you or put a gag in your mouth" .
 
        I can't redo what's already been done but I can seek to improve
 
   the conditions which previously existed.The easy way  to deal with
 
   problems which exists throughout the country in nursing homes and
 
   hospital is to pretend they don't exist.There has and will be times
 
   when the patient is brutalized or sedated heavily with sleeping pills
 
   to keep him/her quiet.The patient's civil rights have been abrogated a=
nd
 
   he/she if beset by a chronic ailment which impair his ability to
 
   fight back ,the problem is exacerbated if no controls are implement-
 =
 
   ed quickly. Once the patient is intimated he/she becomes afraid of the=
 
 
   people he/she has held in trust and many revert to a very defensive
 
   position being overly distrustfull.The caregiver must at this time rea=
ch
 
   the patient with a little warmth and kindness or suffer through a
 
   strained  relationship.
     =
 
 
       To add a little fodder for the cannon,I jump back to an incident
 
   which came about while attending an elder care center back in the earl=
y
 
   eighties.The group was sitting around having a snall snack - one woman=
 
 
   who was not the worst case there was sobbing uncontrolably and couldn'=
t
  =
 
   simmer down.She had a rather frail build so in spite of having Alzheim=
-                                                                      =
 
 
   es Disease didn't appear to be a dangerous patient.She tried to impres=
s
 
   upon the group the fact that she was beaten incessantly at a nursing
 
   home.I for one,do believe the incident to be true because of my own
 
   experience.
 
           You would as a tax paying citizen might think this sort of mat=
ter
 
   is probably an isolated case which will be handled by the controls put=
 
 
   forth by the legislature.This topic of home health care figures to
 
   get worse - consider the following scenario.The hospitals today
 
   influenced by government spending on health care are becoming what I
 
   sarcastically call a McDONALD'S hamburger  stand-you drive up to the
 
   window and order your appendectomy-the orderly services you,without yo=
u
 
   leaving the car - you pay the bill and your done.Your free to wander
 
   into the night but where will you go if you are in need of prolonged
 
   health care if it isn't available ?
 
       It's the same old tack as put out by the nuclear-power people .
 
    They are constanly surveying the populous as to what each individual
 
    needs in the way of transportation to flee the area in case of a
 
    nuclear accident.If a melt down were to occur at the plant there
 
    would probably be an explosion which would wipe most  of the populati=
on
 
    surrounding the area and with the mushroom cloud extending to a fifty=
 
 
    mile radius along with radio-active particles which can have a half
 
    life of 900 years- you 'd better get far away  for a lifetime.
 
 
        Subsequent to the writing of CH.II on pills ,I discovered a gener=
ic
 
    substitute by luck for Sinemet a registered trademark of MERCK & CO.
 
    The day care which I visit serves their own pills to the patients  an=
d
 
    I noticed the pills were not oval but were round face.I inquired thro=
-
 
    ough the nurse about the pill to be sure I was gettin the right medic=
ine.
    =
 
    The c/l ratio was the same as the corresponding Sinemet 25/100
 
    version. At my most recent visit to the doctor I FOUND Atamet.I was
 
    given a prescription  for the pills and am hopeful the pills will  =
 
 
    remain as consistent as those taken at the nursing home. The pills =
 
  =
 
    are referred to as the generic ( 25/100 ).
 
             I came across a bulletin issued from  one of the PD organiza=
tion
                                            =
 
    in which a U OF KANAS study compared experimental data on
 
    the two pills ( Atamet & Sinemet ) and deemed them to be the same.
 
     =
 
         In writing this book, I've finally got the monkey off my back.
        =
 
    The episodes which I referred to are not fabricated or a distortion o=
f
 
    the truth. We all have our own "crosses to bear " and this has been
 
    mine. There were many incidents both good and bad which were held bac=
k =
 
  =
 
    but the message is clear - we as patients and caregivers need to alwa=
ys
 
    be on  our guard to challenge anything  which resembles a disregard
   =
 
    or a violation  of the rights of an individual to receive adequate =
 
  =
 
    medical care. Also, we as patients and caregivers- if we wish to live=
 a =
 
  =
 
    wholesome and fulfilling life must come to grips with the challenges
                                                                        =
 
    facing us as the inevitable journey of living plays out its course.
 
    Although many will have to bear a larger burden than others,life is
 
    meaningful when we can overcome setbacks and be stronger for having =
 
 
    endured them and face the future with optimism in spite of the =
 
 
    limitations imposed upon us because we are human.   =
 
  =
 
  =
 
 
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