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