To Charles Meyer
Thank you for your encouragement. People with a serious interest in
neuropsychiatry are rare here. I was well before PD, except I had amnesia for
childhood trauma, and was depressed occasionally, and sometimes was impulsive,
but well within normal limits. I would not even have been cyclothymic.  L-dopa
made the amnesia unworkable,causing flashbacks. You might say I had PTSD (Post
Traumatic Stress Disorder) which alters catecholamines. My mother had PTSD
which probably caused a tendency for useful, normal mood reactions to become a
problem which could be regarded as bipolar, but we discovered the trauma too
late to see if resolving the trauma resolved the mood problem.
 
I have also had anxiety or panic, dose related due to high levels as well as
not being able to do things when off. I suspect a noradrenaline problem,
perhaps L-dopa metabolizing to NA.
 
I am interested if clonazepam, valproate, carbamazepine, clozapine or
ondansetron might help.
 
PARKINSON'S DISEASE  AND MOOD
 
EARLY DAYS
 
When I first developed Parkinson's disease about 8 years ago, I
noticed that medication affected my mood in the same way that
adrenalin affects people's moods.  I lost my appetite, I became  busy
with all sorts of projects, starting early in the morning and finishing
late at night.  On one occasion,  when I lay down to rest in the
evening, I immediately felt pressure to get up in the morning and be
busy .  My neurologist suggested that a low dose of tryptanol would
be useful in this situation, and indeed  this was correct.
 
EARLY STRATEGIES
 
 When I asked medical advice about my condition, people thought I
should take more medication because I was fairly slow, but I tended
to resist this temptation because I knew that the more medication I
took, the more my mood was to swing up.  I also noticed that
caffeine tended to enhance this effect, so I avoided  caffeine.  On
many occasions, perhaps 20 or more, I noticed an increase in
medication or caffeine tended to cause this elevation of mood, and
so, despite encouragement to increase my medication, I would
always back off the medication and maintain a normal mood.
 
FINE MOTOR SKILLS LIMIT PRACTICE
 
Fine motor skills rather than psychological considerations limited my
practice of medicine, and by  1994 I was mainly teaching bioscience
to nursing students and amusing myself researching unusual
conditions.
 
During 1994 I found I could not  always examine eyes reliably, so I
stopped making appointments, being virtually retired in any case.
 
 
WINTER DOLDRUMS
 
During the winters of 1993 and 1994, I suffered anxiety complications
relating to my illness and medication.  This took the form of a mild
agoraphobia which was quite unpleasant and painful.  Since I was
also depressed, as at least 50% of Parkinsonians are, I hit upon the
idea of using bright light therapy, a well recognised treatment for
winter-effective disorder.  I used the bright light therapy as described
in the literature and found that I felt well, and was more active.
 
FALLING OFF ON THE HIGH SIDE
 
  I ceased the bright light therapy in order to prevent my mood
swinging too high.  However, possibly due to the increase in the
length of daylight, my mood kept swinging upwards.  Though this
upward swing in mood was recognised by my family, my
psychologist and myself, my general practitioner noticed nothing
amiss when I consulted him during  a classical bipolar high.  Such
episodes are  well described complications of  Parkinson's disease
medication, as well as being immortalised in the Sachs video
"Awakenings"
 
 
The early opportunity for treatment was missed, I became disoriented
in time and place and required admission to hospital where my
condition settled promptly with minimal sedation and withdrawal of
Parkinsonian treatment.
 
GETTING HIGH BOTHERS PEOPLE
 
Getting high on L-Dopa for a few days bothered people in a way that
depression and anxiety could never do, galvanising them into action.
 
VERY RAPID MOODSWINGS RELATED TO MEDICATION LEVELS
 
Two weeks after discharge from hospital, I went to a teaching
hospital to have my treatment stabilised with increased dosage of
quick release sinemet as recommended in the literature.   However,
also reported is the problem of moods that swing very rapidly,
corresponding to on/off times and presumably to the medication.
Each 3 hours, as the medication level went up, and as it went down
again, I experienced a succession of moods.  I would feel friendly
towards people and then quite unfriendly.  I had feelings of great
warmth towards everyone in the world, and then feelings that  people
were not my friends.  I would cry for no apparent reason. I was
cantankerous and easily irritated.
 
Despite the clear relationship of these mood swings to my
medication level, and despite my belief, based on pharmacology and
past experience, that the way to deal with this would be to use a slow
release variety of medication to level out the peaks and troughs, the
classic approach was adhered to.
 
 Subsequent to my discharge, and after the changes in mood became
intolerable and affected my relationship with my family, the
medication was changed to slow release.  My moods stabilised
instantaneously and remarkably.
 
LOWEST SAFE DOSE
 
Stabilsation should first establish a safe, low, steady level of
medication by gradually reducing medication, using psycological well
being as the yardstick rather than mobility. I am able to manage on
200mg or less per day of Sinemet CR, as distinct from 1000 mg 8
months ago.
 
 
LONG TERM  VARIATIONS  IN MOOD
 
The slower, long term variations in mood appear to depend on the
total amount of medication over a long time, perhaps by emulating
the coming of Spring in seasonal affective disorder.
 
INSIGHT
 
Learning to live with PD medication is like drinking alcohol. One can
learn how much is safe and how much leads to trouble, and to
modify one's behaviour accordingly. Except at the extremes of mood,
we are aware of our moods, and those who know us well can easily
detect when we are not ourseves.  One has to  have a plan to deal
with moods, like Ulysses being bound to the mast and putting wax in
the sailors ears, thus avoiding the siren's trap.
 
 
IS HE CLEVER ENOUGH TO BE A DOCTOR?
 
 Whilst my medicine was being stabilised, cognitive tests were
performed.  At the time the tests were performed, I could not think
clearly.  I could think accurately but quite slowly and I could not
address many issues at the one time, so I put all my effort into
concentrating on one task at a time.  This problem with thinking has
been described after cardiac arrests and anaesthetics.
 
Parkinsonians, especially those whose disease involves the left side,
are known to be slow in processing time, but accurate.  Thus my
cognitive functions were tested at a time when I was somewhat at a
disadvantage, without allowance for the difficulties known to exist in
Parkinson's disease.  Even whilst functioning under these difficulties,
my verbal IQ was found to be in the superior range.
 
 
Subsequent to my discharge, I noticed that my capacity to think
clearly and to multi-task improved considerably.  Subsequent
psychological testing confirmed that my IQ was in the expected
range for medical practitioners.  Processing speed was down, but
accuracy was maintained.
 
ALZHEIMER MYTH EXPLODED BY CONTROLLED STUDY
 
 The relationship between Parkinson's disease and cognitive function
is confusing,  Early estimates suggested that 30% of persons with
Parkinson's disease would develop Alzheimer's disease.  However,
work by St Cyr and others, using matched controls, suggests that the
incidence of Alzheimer's disease in Parkinsonians is the same as that
of the general population in the same age group, ie. about 7-8%.
Furthermore, if one allows for the 7-8% of Parkinsonians who suffer
confusion relating to their medication, and uses tests which are not
highly time dependent, one finds that Parkinsonians have the same
IQ and cognitive functions of the general population.
 
  St Cyr and others found that "No global cognitive decline was
observed in the Parkinsonian group, moreover memory and
visiospatial abilities were generally intact".
 
AN OUNCE OF PREVENTION
 
I am more aware of the early symptoms of levodopa excess, eg. vivid
dreams which I at first thought were beneficial, are actually
precursors to hallucinations and loss of contact with reality.  Even
though my prescribers know that I have had difficulty with the
psychological side effects of my medication, they still look at me and
say "you're a bit slow, take a bit more medicine".  I, however, have
become  once bitten, twice shy and have resisted the temptation.
 
 
My condition is regularly monitored by:  myself, my family, a nursing
sister, a neurologist, a psychiatrist and general practitioner. I take my
medication with excellent reliability.
 
A strategy of monitoring, L-DOPA dose reduction, and early
intervention with benzodiazepines is in place. Clonazepam is helpful
as a mood stabiliser. The use of other  mood stabilizers  and
clozapine is under consideration.
 
A DIFFERENT TYPE OF DOCTOR
 
 People still ask me about medical matters, especially if they have
been to see their doctor and do not feel happy with the explanation
of their illness.  I am using a system with a medical textbook on CD
Rom, where I can look up conditions and also  access the US
Pharmocopea on CD Rom.  I am therefore able to print out useful
information  and help people understand their condition.  I see that
there could be a niche where I could happily function as a medical
practitioner doing this sort of educational consultation. I have just
reviewed the literature on Pompe's disease for a friend My mobility
prevents me  from operating and performing other highly
manipulative procedures, but I do not attempt tasks beyond my
capacity.
 
CONCLUSION
 
I feel that  I am able to be a retired medico, with an interest in
counselling and education, and whilst I have responsibly set
restrictions on myself, am not averse to having reasonable conditios
imposed.
 
FURTHER READING
 
"Behavioural complications of drug treatment in Parkinson's disease",
Geoffrey L Cummings MD,  Journal American Geriatric Society 39,
708-716 1991
 
 Parkinson's disease and depression require critical evaluation (Anne
E Taylor, Jean Saint Cyr, Anthony E Lang and Frank T Kenny in Brain
1986 109, 279-292).
 
"Frontal lobe dysfunction in Parkinson's disease" by Anne E Taylor
Jean Saint Cyr Anthony E Lang, Brain 1986 109, 845-883.
 
"Neurolopsychological and psychiatric side effects in the treatment of
Parkinson's disease", Jean Saint Cyr, AE Taylor and AE Lang,
Neurology 1993, 43, supp 6, 47 DS52
 
Enclosed (not on email)
Copy of psychological report from J. Roodenburg
 
Copy of the side effects printout from the US Pharmacopia on CD
Rom, written clearly in plain language  and suitable for handing to
the patient.
 
Copy of the psychiatrist's notes of my admission to  District Hospital,
 
 
Here is a draft I wrote about flashbacks and PD
 
  1  L-Dopa Flashbacks in Parkinson Disease
 
  1.1     Introduction
 
  1.2     Flashbacks - Past Reality
 
  Flashbacks are a vivid reliving of real but historical
  events, for example Vietnam veterans and  combat.
  1.3     Emotional Reality
 
  The veteran knows he is no longer in Long Tan. He
  experiences the feelings. The quick reacting, emotional
  "Right Brain" is still expecting danger.  Part of him
  doesn't know the war is over. A car backfiring or a
  helicopter triggers the experience.
  1.4     Hallucinations - Distortion of Reality
 
  Hallucinations, like seeing an ocean liner cross the
  highway, are a distortion of reality
  1.5     Treatment
 
  Drug treatment is difficult, especially in Parkinson Disease
  where dopamine antagonists are contraindicated.
  Psychological treatment is based on reality. The experience
  is real, but it is a past reality. Guided visualisation is
  one way of helping the  "subconscious" to come home from the
  war.
  1.6     Method
 
   This report is based on support group  workshops  and
  discussion with Parkinsonians.
  1.7     Report of Cases
 
  The cases are the stories of people with PD, from their
  perspective. Each case is chosen to illustrate a point, and
  is based on a real experience.
  1.8     Anthropology
 
  The perspective is somewhat anthropological, as the author
  has PD.
  1.9     Cases
 
  1.9.1   I Had to Take Hold of Myself
 
  Vignette
  A gentle person, she saw people standing around the foot of
  her bed, talking. They wore suits. She recognised them as
  people from her past. She "had to take hold of herself"  to
  distinguish present from past reality. She only took two
  Carbidopa/L-Dopa  100mg/25mg per day. Her flashbacks
  corresponded to the estimated  peak L-Dopa brain levels. She
  was advised to try slow release C/L to minimise peaking.
  1.9.2   This case illustrates
 
  1.9.2.1 Vivid memories
 
  Her memories were not merely history book narratives.
  Sights, sounds, tastes, smells and emotions accompany
  flashbacks. The person is in danger of becoming a
  participant in a vitual reality
  1.9.2.2 Real memories
 
  The men were real. Her experience superficially resembles an
  hallucination.
  1.9.2.3 Reality maintained
 
  She was able to keep in touch with reality, to look at the
  past and the present and to know the difference, somewhat
  like knowing the difference between live tv and videotape.
  This is called reality testing, and we do it all the time.
  1.9.2.4 Peak dose effects.
 
  A constant level of drug enables the brain to adjust. Levels
  that rise and fall rapidly cause symptoms because the brain
  cannot adjust quickly. This is why short acting
  benzodiazepines such as halcion can cause strange effects.
  1.9.3   Happy Memories
 
  1.9.4   Vignette
 
  The past for this 70 year old was full of real but happy
  memories. There were no terrors because his parents had been
  loving and wise. His memories of life on the farm were many
  and varied. Strong men making haystacks, gardens full of
  mulberries, plums, grapes, and figs. Women who made jam,
  washed in coppers and fed shearers and harvest workers.
  Great gentle horses pulling ploughs that turned the sod in
  one long never ending strip. People who treated him with
  warmth and compassion, who celebrated death even as they
  grieved for those who died.
  Happy Memories had a normal subconscious, which is a place
  of happiness. Visiting the normal subconscious is like
  visiting a happy, playful child who lives with nurturing
  people in a tropical rainforest, full of amazing and
  wonderful sights and sounds
 
  1.9.5   This case illustrates
 
  1.9.5.1 Vivid memories
 
  These memories are the first and most permanent, and persist
  when Alzheimer's disease plays havoc with later memory.
  1.9.5.2 Happy memories
 
  People with happy memories can tolerate larger doses of L-
  Dopa. Loss of contact with reality is still possible.
  1.9.5.3 Happy normal subconscious
 
  Freud's view of the subconscious as the place where
  repressed feelings exist is simplistic in the extreme. Freud
  described only the pathology of the subconscious, a process
  like mistaking lung cancer for the normal lung. His view was
  further distorted because he took the adultist view that the
  people he saw were unreasonably angry with their parents,
  when in fact the parents had been violent towards the
  children. The normal subconscious is happy, but not to be
  confused with idealised memories. The normal subconscious
  has resolved panful events such as the death of a loved one,
  whereas idealised memories indicate amnesia for painful
  events.
  1.9.6   Four Leafed Clover
 
  1.9.7   Vignette
 
  L-Dopa caused a return to the Ireland of his childhood, with
  bonnets, baby carriages, and violence, namely people hitting
  each other with pieces of wood. Everything looked large, the
  way it would to a child.
  1.9.8   This case illustrates
 
  1.9.8.1 Reality confirmed by content
 
  The period clothes, the view from a child's perspective, and
  the historical record of growing up in Ireland where violece
  was commonplace support the diagnosis of flashbacks.
  1.9.9   Kokoda Veteran
 
  1.9.10  Vignette
 
  Despite the reality of the present world, Kokoda was
  spending much of his time fighting the Japanese in New
  Guinea in World War Two. Suggestions made included stopping
  bromocryptine, using a D2 blocker, talkig reality therapy,
  and possibly treating the Post Traumatic Stress Syndrome.
 
  1.10    This case illustrates
 
  1.10.1  Post Traumatic Stress
 
  Children exposed to stress while their personality is
  forming develope Post Traumatic Stress Syndrome. Because
  their personalities are still forming, they can also
  develope problems like multiple personality disorder.
  Kokoda has no such problems, but reliving war experience is
  torment enough.
  1.10.2  Failure to distinguish past from present
 
  Reality therapy is talking about and showing and touching
  real things, be they people, pets, cars, trees. The past
  reality is not denied, or treated with drugs, but calmly
  accepted for what it is - a painful, past reality. This is
  best done right at the time of stress. Prevention is better
  than cure.
  1.10.3  Reality confirmed by history
 
  External confirmation is helpful, but not always
  forthcoming, and not always sought after.
  1.10.4  Continued vigilance at subconscius level
 
  Kokoda still hits the ground when cars backfire. It is as
  though noone has told the subconscious person the war is
  over. Therapy is aimed at telling the symbolic 'Right brain'
  that the war is over.
 
  1.10.5  Lost Child
 
  1.10.6  Vignette
 
  This 50 year old professional found himself in a childhood
  where there was all kinds of violene - physical, verbal, and
  sexual. A terrifying, depressing, crazy reality of knives,
  fire torture, and rape. A reality previously experienced as
  nightmares, hidden by amnesia. Rather than give up
  treatment, he underwent counselling to try and live with the
  traumatic past and be able to move in the present.
  1.10.7  This case illustrates
 
  1.10.7.1     Anamnesia
 
  Sachs describes the breaking down of amnesia by L-Dopa, but
  no other references are known to me.
  1.10.7.2     Paucity of historical confirmation
 
  Very little external evidence existed to support the reality
  of these past experiences.
  1.10.7.3     Reality confirmed by content
 
  Some scenes were seen from a child's view, eg through the
  bars of a cot.
  1.10.7.4     Ease of confusion with schizophrenia
 
  It is easy to see that the absence of external evidence
  could lead to the view that Lost Child was out of touch with
  reality. A label of schizophrenia easily follows.
  1.10.7.5     Dilemma of dose
 
  The dose of L-dopa is hard to stabilise. Too much causes
  flashbacks, too little causes lethargy. There is a tightrope
  effect.
  1.10.7.6     Dilemma of Dopamine antagonists
 
  Possible selective L-Dopa antagonists such as clozapine may
  help suppress the psychiatric side effects. However, there
  is commonality amongst receptors. Giving dopamine blockers
  to PD sufferers goes against the grain, but there have been
  favorable reports. Bone marrow depression is said to be
  fatal one in 3,000 cases. There is a report of ondansetron
  being used in a letter to the BMJ.
 
  1.11    Discussion
 
  It is important to differentiate between schizophrenia and
  flashbacks, since the treatment may be very different.
 
     Lloyd Stewart