Contents and Extracts only: The Phoenix Files     Updated  20.1.09

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The Plight of the Phoenix  
Postscript to The Plight of the Phoenix     
Profile of a Possible AMD    
10 Steps to AMD Rehabilitation
12 Principles of AMD Rehabilitation   
Management of AMD 
Towards a Working Definition of Mental Illness 
Analysis of Denial of Mental Illness in Society   
A World First Medical PhD, Can You Help? 
 

Postscript

These files are not the final word on AMD management and rehabilitation, much still needs to be done for a truly comprehensive text to be completed, not least the systematic survey of the opinions and experiences of AMDs themselves. 

 However, we trust that the information that follows will prove informative, useful, and supportive, to those for whom it has been written.   A truly comprehensive Manual would cover these points and many more.  We live in hope that one day such an important co-operative effort will be made.  Can you help?  Do you know interested, qualified and dedicated people who can?

 

The Plight of the Phoenix                                                                                          Contents Return

Phoenix,  the legendary bird who rose from the ashes to fly again, is a popular metaphor relevant to the fluctuations of human endeavours. Singed tail-feathers are a humorous footnote in our folklore, and are an apt analogy for a painful learning process, or a narrow escape.

However, there is another, more real life human phoenix who also rises and falls, singeing feathers in what is too often a temporary escape from the flames; becoming progressively more scarred, enervated, and diminished by the recurring attrition. In reality, it is phoenixes plural too, because there are approximately 1% (depending on variability and clinical severity) of any given population thus afflicted, or who suffer related conditions with similarly distressing and debilitating symptoms. Sadly, despite the help available, (basic and under-funded as it is), too many of these usually intelligent and creative, though tormented, beings suffer lives of thwarted potential and not so quiet desperation. Equally sad is their capacity to blight the lives of others, however inadvertently.

Many brilliant and notable historical figures have soared and crashed and risen again, powerful and despairing by turns in the grip of their emotional torment, and often in the harsh glare of publicity. Great creative talents have been blunted or destroyed by the sustained attrition of overwork, personal problems, and even substance abuse that dulled the pain and sustained the soaring above an ever-looming void, just that little bit longer. A high price to pay for the extra intensity of life and emotion so unknowable by ordinary people. How many others have there been throughout history, of lesser notoriety or fame, who have suffered thus in their turn?

As understanding of the illness has progressed, so terminology has varied over time, reflecting popular perception of the problem as well as increased medical understanding of it. The nomenclature ranges from the opprobrious, to the euphemistic, to the clinical. "Melancholia" was the romantic view (for non sufferers anyway), of the 19th. Century, and still only told half of the story. The 20th. Century saw the use of manic depression, mood-swing, bi/uni-polar affective disorder, and the practical term "manic depressive psychosis" or MDP, which is quite definitive and preferable to the more euphemistic terms. The collective term for the range of related conditions in modern times is "Affective Mood Disorders", AMD.

Unfortunately, the poorly informed make much of the term "manic" and the supposedly fearful connotations. It should be stated, here and now, that the ordinary population has more to fear from so-called normal members within its own ranks, than from MDP\AMD sufferers. This would apply to mental illness sufferers in general; Hollywood and others have much to answer for in this respect! The MDP Phoenix is the classic AMD model, but the other forms must not be forgotten, and newer and more rigorous classification of AMD syndromes ensures that all AMD sufferers get recognition, medically and socially.

Previous to the 19th. Century, "lunatics" who were sufficiently affected were incarcerated regardless of causes or symptoms. There has been a long dark age of mental health care in human history that has still not been fully displaced by enlightened attitudes, and earlier AMDs suffered accordingly. Wealth may have provided a cushion for some at a time when treatment and conditions of care were minimal, but public institutional incarceration was indiscriminate.

During the later 19th. Century, more rigorous observation identified one particular group who had remissions, and MDP as a separate and distinct mental illness was recognised in its basic form. (Thank-you, Dr. Emil Kraepelin.) Continuing stability was also observed in some MDP sufferers who "took the waters" at particular spas. In the early 20th. Century, the stabilising element responsible, in the form of soluble salts, was identified as lithium. After some problems with toxicity, therapeutic doses were finally developed in 1947, in the form of lithium carbonate. (Thank-you, Dr. John Cade.)

Since then, other formulations have been developed, including slow-release in the 1980's; lithium remains the standard medication and prophylaxis, though its effects are more marked on the manic form of MDP\AMD. Blood levels are regularly monitored, as well as other metabolic functions. Other medication may be taken concurrently and/or in conjunction as necessary. Lithium holidays may be possible, or even medically necessary, under supervision, and with reliable carer support. Lithium Information

A genetic origin has been established, epidemiologically and empirically, that ensures MDP\AMD sufferers can spurn, with authority, purveyors of quack cures and false hopes; anything from herb teas and religious conversion-cum-exorcism, to money wasting talking cures, and smug psycho-social theories, revealed truths, and pop psychology. A well earned relief, a victory for common sense for the individual AMD, and a new perspective for all AMDs seeking and utilising improved rehabilitation methods. NB, however, a definitive, authoritative, and up-to-date "Manual of AMD Rehabilitation" is yet to be commissioned and funded; emphasis on AMD rehabilitation potential must precede this.

Increasingly, AMD is postulated to be closely associated with other disorders such as OCD, ADD/ADHD, Dyslexia, some so-called neuroses, and Asperger’s Syndrome, all of which have concomitants of metabolism/physiology, mood, and other related functional or cognitive dysfunction, as well as discernable genetic links.  The research continues, and no doubt improved knowledge and better insights will also mean re-definition and re-classification of other ‘mental’ disorders, even as to what actually constitutes a ‘mental illness’, with consequent re-appraisal of treatment.

Sadly, the Mental Health dollar still attracts too much of the wrong attention from the spuriously motivated and qualified. Patients who do not successfully "heal", (a serious misunderstanding of the disease itself), are expediently their own scapegoats, and the frauds go on unpenalized, profiting from straw-clutching. These abusers of trust include ideologies, religious lobbies, and so-called professionals of poor intellect and conscience. Also, ill-informed, empire-building, or budget-conscious politicians and public servants do their share of damage, with expedient or ill-founded value judgments and priorities; a problem solved is a budget lost, perhaps?

Much still needs to be done to overcome these problems. Too often, the fact of the diagnosis is used expediently as a weapon against the AMD, especially those who try to speak out against prejudice and shabby treatment. Such needless provocation of an AMD is discriminatory victimisation, emphasising their social vulnerability, and enabling, if not justifying, expedient discrimination. Whether from a personal, or worse, an institutional source, these attitudes are based on ignorance and prejudice, and are reflected in their worst form by authorities who still subscribe to the principle that reduction, where possible, to the status of hopeless case is still seen as optimum health care planning.

Such attitudes are reprehensible in supposedly socially enlightened times, and would be anathema to any disadvantaged group seeking social justice and recognition. More direct involvement of patients themselves is thus necessary at all levels of care, plus the use of properly trained AMD social workers. Support groups need scrutinising for effectiveness and professional liaison. All AMDs and carers need detailed information on the illness; this is one medical situation when, from a patient point of view, comprehensive knowledge of the problem is vital to successful rehabilitation.

Ideally, separate hospitalisation and rehabilitation for AMD/MDPs should be common policy. At present, conventional hospitalisation may mean patient condition is worsened by surroundings that reinforce the realisation of ignominious and even abject dependence on the system. Repeat admissions under the same conditions, without proper treatment and rehabilitation, can only diminish the quality of life and prospects for the patient.

To reiterate, a comprehensive text on AMD/MDP rehabilitation has yet to be written, and needs a multidiscplinary approach from motivated and interested professionals to complement input from patients and carers alike. Any other than an integrated approach will be insufficient to successfully address the issues, and government backing is essential.

Similarly, public awareness and acceptance could be improved, without making AMD\MDP "buzz" concepts, and liable to novelty fatigue. Genetic counseling should also be discussed, as a sensible modern issue. Genetic engineering may yet effect alleviation, if not cure. It may facilitate public acceptance and education. A gene suite will be found to be involved, with other related mental illnesses manifesting themselves as a result. DNA testing will aid early screening, and more certain diagnosis.

Diagnosis at present may require a period of observation, because the diagnostician is seeking a pattern or syndrome among symptoms common to other mental illness, and to normal stress patterns of everyday life. As well, the illness may be present in atypical or incomplete form e.g., manic without depression, or vice versa; both stages may occur, though with unequal intensity, or there may be cyclothymia or hypomania etc. Hence the need for a collective term like AMD to acknowledge the scope of the syndrome, although MDP is still relevant, and more specific to the classic bipolar form.

Physiologically, the illness is characterised by biochemical imbalance in brain function; lithium in correct concentration helps to restore and maintain this balance.  Research has so far shown that cellular ionic transfer mechanisms, plus neuro-endochrinal and neurotransmitter functions may be involved.  Also, a gene has been found that blocks action by a cell protein governing signal transmission, and lithium functions similarly to that gene.  There is also the inositol recycling process that can be controlled by therapeutic lithium, which is also the reason why non-AMDs are unaffected by lithium intake.  Seretonin regulation is also involved, most importantly in depressive stages.  All the factors are not known or understood, and the picture will become clearer as research continues.  Further mapping of the human genome will doubtless make a contribution as bio-genetics and micro-biology make contributions.  Meanwhile, orthodox treatment and common sense are the best options offering at the present time, and advances in the treatment, or even elimination of AMD, are yet in the future.  For reference purposes, rely only on current, mainstream, and reputable, texts and journals, plus comparative use of similar Internet resources.

Essentially, classic MDP\AMD is characterised by periods of increasing mania and super-confidence, heightened creative or sexual activity, seemingly endless energy expenditure, altered sleep patterns, (usually less rather than more), spending money, absenteeism, travelling, grandiosity, fluctuations in academic or other applied activities, pronounced mood variations, poor stress and other stimulus resistance, possible substance abuse, thrill-seeking, shortened attention span, incongruent plans and ambitions, over-committment and unsolicited giving of advice or help to others, weight loss due to hyperactvity or irregular food intake, brightness and intensity of visage, manner, and physical deportment, etc.  Having a mind like a badly-tuned radio is one description of the mental life of a manic phase.

With time and stress, this affective condition could become increasingly more brittle, (not all highs are happy), characterised by hyper-irritability, before a descent into depression that may last for months.  During this latter period, expert supervision may be required, as suicide may be a possibility even when least expected.  Responsible persons should see that extreme, cyclical, atypical, and not necessarily socio\psychopathic behaviour is properly investigated by a psychiatrist; it follows that these are very general details and supplied only as a guide. 

Physical concomitants of depression include extreme lassitude, physical weakness, and overall low energy levels, daytime sleeping with consequent broken night sleep.  Also, diminished sex drive and other altered or diminished reactions to everyday stimuli, and even irritability associated with such stimuli as bright lights or noise.  Inability to filter external stimuli can be a characteristic of both AMD extremes, especially in acute phases, and intellectual performance may noticeably dwindle, while a frightening seemingly anoetic mental state may cause further distress during a depressive phase.  Flashbacks, usually distressing, may also manifest during depression. There will also be bad mornings, worse days, and a lifting of mood during afternoons, classic signs of deep, clinical depression. Dietary changes may manifest as diminished appetite, but also include a craving for protein and for sugar, other carbohydrates, and the need for heavier, fattier ‘comfort’ foods, which will result in weight gain if exercise is not maintained at this time.

For either high or low states, commonsense support, including insight-oriented training towards self-awareness of changing mood states, is important.  Cathartic-style 'psychotherapy' is to be avoided at all costs to avoid worsening the mood changes, furthermore, any stress and adrenalin rushes are a dangerous for any stage of AMD, jeopardizing already-fragile judgement, as well as promoting increasing instability and further patient alienation from continuation of management and rehabilitation.

A new problem that may inhibit early diagnosis of juvenile AMD is the possible misdiagnosis of ADD, (Attention Deficit Disorder), both as a genuine mistake, or when unwilling to confer an AMD "label".  Particular care must be taken to see that this misdiagnosis does not occur.  Proper education and acceptance of the patient and their support network should counter bias against an AMD diagnosis, although ADD/HDAD may also prove to have origins in that suite of genes mentioned above.   As always for any AMD patient, differential diagnosis is of paramount importance.  

An important aspect of the classic form of AMD/MDP is its cyclical nature, from rapid cycles even to the point of long remissions, knowledge of which are essential to diagnosis.  (Sadly, these remissions are often seen as cures by the unscrupulous or the over-optimistic).  NB, other forms of AMD are generally variations on these themes.  Also, poor resistance to sensory overload or general stress are common to AMDs, and may provoke extremes of irritability or withdrawal, relative to specific patient condition, and irrespective of original onset triggers. 

The greatest enemies of AMDs are the trivializers and dissemblers, well-meaning or otherwise, who seek to play down the importance of the illness because superficially, the signs represent problems of relatively lesser importance in the general community. However self-indulgent or subjective the complaints of the sufferers, they are relating symptoms which must be accepted as such, in conjunction with patient history, when considering diagnosis and treatment. AMD underlies all of life for sufferers, so careful screening, management and rehabilitation are necessary, with a modicum of commonsense There may be remissions, but there must always be preparedness for the next episode.  Remissions are not cures, and likewise, quack remedies and talking cures that attempt to trade on remissions do not eliminate genetically derived illnesses, they are both a dangerous waste of time, and most reprehensible.

True manic episodes must be distinguished from mere irritability or exitability, and similarly, endogenous depression from reactive, and cyclothymia from temperamental.  Ill-informed or inexperienced carers can also be a hazard at this crucial stage. Objective diagnosis, quality care, and comprehensive rehabilitation must prevailFailure to understand these factors will cause unnecessary suffering, and should be regarded as irresponsible and negligent. 

Reality for the AMD sufferer is distorted by intensity of feeling and emotion that affects judgment more than perception. This is quite different to the reality problems of the schizophrenic, which are not part of this discussion. (However, for the sake of schizophrenics everywhere, the loose usage of the term in everyday life should be discouraged, because it is basically incorrect and misleading). Only in the severest cases of mania do MDP\AMDs suffer from problems of perceptual reality; physical conditions may contribute to this, such as lack of sleep or food. No link between MDP\AMD and Schizophrenia has been established. ("Schizo-affective" relates to symptoms that indicate a combination of both major psychoses. For expert diagnosis only.)

As regards AMD rehabilitation, social and environmental factors are important, as well as medical treatment, and all aspects need to be systematically developed. Also, with classic MDP, it may be difficult to convince a soaring phoenix to land before crashing. But when applied, therapy should be firm but fair; from initial damage control, to stabilization, to ongoing stability.

The AMD/MDP must learn self-regulation by these standards also, and the goal must be to change from active MDP to potential MDP, and render the illness more incidental to the mainstream of life. AMDs in general should be similarly advised and encouraged.  NB, substance abuse and an irregular lifestyle may trigger destabilisation. Long-term stability is important, with stable and healthy lifestyle, and support and monitoring by family and friends; even reappraisal of occupation or ambition may be necessary.

To repeat, regular medical monitoring is necessary for lithium blood levels and other metabolic functions. Monitoring should accompany all medication.

For MDPs, the temptation to soar again should be avoided where applicable, drug therapy should be maintained, and remissions should be seen for what they are, in all types of affective mood disorders. Essentially, controlling highs is the key for the classic MDP syndrome. The MDP\AMD will learn self-regulation with time; a diary is useful for charting the patterns of life of mood disorders in general, and aids the referring GP, and specialist diagnostician.

The motto for the stabilized MDP\AMD could be "the price of peace is eternal, though benign, vigilance." Carers should always maintain the firm but fair approach; "empathy rather than sympathy" would be an appropriate motto for them. Over-solicitousness is counter-productive, and role-playing carers and those who exploit sufferers for their own egos, or in the name of ideology, are dangerous and should be avoided at all costs.

Similarly, attend only support groups with a common sense approach, medical and legal support, and no hidden agendas. "In the name of" so easily becomes "an excuse for....."; independence is lost, with the consequence of worthy ideals and resources being subverted to less worthy causes. Avoid those in any position of authority who plead or justify that they are only following orders or policy, and are thus abdicating any personal responsibility for what they do. Lives may depend on awareness of these conditions of care. Educate others in these matters.

The care network must be strong, dependable, and enduring.

Initial acceptance of the diagnosis and treatment is important, as this is the beginning of full recovery, and the early foundation of renewed emotional stability. Lithium and dissembling alone will never initiate optimal rehabilitation. Nor will false hopes and wishful thinking. During rehabilitation, concentrate on allowing the original stable personality to emerge; perspective obfuscated by the illness must be redefined, however painful this may be. Common sense is always important; as is the careful pacing of recovery. The "DESIDERATA" of popular note could have been written with AMD rehabilitation in mind.

More research needs to be done on AMD, which now needs a higher public profile. Drug abuse and AIDS have also jumped the funds queue over mental illness. However, with what knowledge is available, much can be done in the way of early identification of the AMD sufferer.

There are two major onsets, at adolescence and middle age, with others scattered between as part of a continuum,  typical manifestations of the genetic origin of AMD; these onsets may or may not have discernible early signs, being . Physiological and/or hormonal changes may potentiate the illness in those susceptible, as well as other concurrent life events influencing the course of an episode.

Essentially: always look for and observe carefully, those individuals whose cycles of behaviour, positive and negative, could be described as larger than life, and whose overall life pattern may seem self-defeating. Typical of undiagnosed Phoenix, in fact.  Early life onset is the hardest to deal with, as atypical behaviour may go in the grab bag of adolescent behaviour, or be masked by the current trend to indiscriminately confer syndrome diagnoses such as ADD, OCD, narcissism, neuroses or "abuse" on problem cases, etc. The label of psychotically  ill would still appear to be the least desirable of all!

Without vital early diagnosis, stabilisation, and rehabilitation, the young AMD may simply drop out, and prime productive years, both personally and socially, may be lost. Recurrence of the illness over the years when/if this occurs, is wearying, enervating and personally and socially damaging. Long-term AMDs can still have rehabilitative potential, of course, but the younger AMD has the most potential of all, and this must be urgently addressed.

Equally sadly, AMD seems to be a disease of intelligent people; undiagnosed, or improperly treated or rehabilitated, their resource and industry are wasted so fruitlessly on coping with, and compensating for, the effects of their illness. Yet so much can be done to make their lives stable and useful again: early identification, treatment, and rehabilitation are the keys, with common sense the dominant theme.

Finally, given the continuing indifference of society at large towards this genetic illness, it is also a sad irony that the more rehabilitated and seemingly normal the AMD becomes, the less sympathy and/or empathy they can expect, and, as the less "visible" the illness becomes, credit for, and understanding of, the struggle to survive and overcome the extremes of the illness is never usually acknowledged. There will never be a Special Olympics or Big Fundraisers for the mentally ill, and any System’s DOC, if one exists, does not mean an AMD will ever be networked. Most likely the more severe cases will regarded by many as just more NIMBY scapegoats on Welfare.

 But the rehabilitating AMD must persevere and endure for personal survival, setting an example for others in need, always contributing to societal education about mental illness, and trusting that one day there will be better acceptance and understanding, or even better, elimination  of the illness itself from the human genome.  Until then, the good news is that, given early diagnosis of AMD/MDP, optimal management and rehabilitation, plus a healthy lifestyle with no substance abuse and/or over-medication, an otherwise normal lifespan should eventuate

----------------------------------------------------------------------
Dedicated to those who, in hindsight, should have survived.
More importantly, this site is dedicated to those in the present and future, who,
with foresight and common sense help, will survive.

----------------------------------------------------------------------


A pamphlet is a pamphlet, so there must be other sources of information. Comprehensive and recommended are:

Manic Depressive Illness, co-authors F. Goodwin and K. Jamison,
      OUP New York 1990-, 938pp. ISBN 0195039343

Bipolar Kids, R. Greenburg, DaCapo 2007, 294pp, ISBN 0738210803

New editions of reputable and mainstream medical, pharmaceutical, biological and related texts will contain updates and cross-references, and should be continually updated because of the accelerating pace of Life Sciences research.   See also Johns Hopkins Bipolar Studies. Quality texts, hard copy or virtual, should contain bibliographies and indexes to expedite research. Periodicals like The Lancet, New Scientist, Scientific American, Time, Newsweek, etc. are also topically useful. Even reportage in daily and weekly press of good repute makes an occasional contribution, and is a good indicator of the sources and types of populist (mis)information which should be refuted and replaced by facts and common sense.  

Beware also of populist, "touchy-feely" or "guru"-style attempts at profiting from publishing "cures" based on spurious subjective or "revealed truth" material. In particular, even in reputable publications, note the paucity of data on rehabilitation for AMD; research and clinical emphasis is still directed at diagnosis and understanding of disease types and mechanisms. (eg, Jamison et al do not feature the word "rehabilitation" in their index.)

The potential for rehabilitation of AMDs, especially after early diagnosis, must now be recognised and acted upon, medically, socially, and politically. This is the next major challenge to rendering the illness more incidental to the mainstream of life, both for AMDs, and the other people that share their lives, and society at large, who will then collectively benefit from their considerable intelligence and realised potential. 

Good luck in the search for knowledge, understanding, and proper recognition......

PLEASE NOTE:
1) For the purposes of this pamphlet, MDP stands for Manic Depressive Psychotic, bi-polar syndrome and patient; AMD stands for Affective Mood Disorder, collective syndrome and patient, generally interchangeable; MD stands collectively for Mood Disorders, as per DSM.III-R, and its use has been avoided because of the clash with "Medical Doctor" as well as the abbreviated form of "Manic Depression". The particular use of the terms "MDP", "AMD", or "AMD\MDP" attempts to emphasize that generalization of classification, though convenient, may blur distinctions, to the detriment of AMDs themselves in their various forms. This can only be self-defeating if not acknowledged.

MDP\AMDs, or "phoenixes", are the most obvious examples of AMD sufferers, and as such are the standard introduction to AMD, but the collective nature of AMD should always be implicit in the terminology. Nomenclature and classification are ongoing problems, but this is a small price to pay for the results of any change or research that invests in the future.

2) Lithium has not been superseded by other newer drugs, and does assist with diagnosis, as non-AMDs are not affected by it. Treatment should emphasise stabilisation with lithium as required, and then systematic rehabilitation to avoid or minimize dependence on any one drug therapy, as well as minimising drug side efffects. This is the central theme of the Phoenix files.

10 Steps to AMD Rehabilitation                                                                           Contents Return

1)  Consent to be diagnosed and realisation of the illness by the individual

2)  Diagnosis, subsequent acute/sub-acute care

3)  Acceptance of diagnosis, reasons, and implications for the future

4)  Stabilisation, medium term: medication routine, return to optimum health, self-education, incl. diary keeping

5)  Carer and support network: organised, educated, empathic rather than sympathetic

6)  Reappraisal of lifestyle: future, career, relationships, abilities, etc.

7)  Integration with other AMDs, support networks and groups,

8)  Advanced personal education: early onset signs, stress management, mood identification, self-monitoring, medication holidays as necessary, either for health or learning purposes

9)  Long term developments: self-sustaining lifestyle, suitable permanent employment, greater independence etc.

10)  Use of experience to help other AMDs, in conjunction with networks: referral, support, EXAMPLE

With these 10 criteria must go a properly integrated and legitimate national support and information network, (unhindered by politicians and public servants), accepted standards of screening, care, and rehabilitation, with scientific and medical links, strong lobby connections, and overseas interface and networking. Even to the extent of a UN charter if that is what it would take to see standards established and maintained. To those imbued with common sense and an understanding of AMD, such principles would seem self-evident.

12 Main Principles of AMD Treatment                                                          Contents Return

1)  Early and competent diagnosis, and acceptance of same

2)  Medication and competent acute/post acute supervision in a specialized AMD environment

3)  Competent and trustworthy carer and support network

4)  Appropriate health regime and daily routine; avoid extremes and learn to regulate rather than feed the symptoms to avoid vicious cycles of distress developing

5)  Reappraisal of ambitions and lifestyle

6)  Self-and-carer education; ongoing, commonsense and mainstream

7)  Take care with relationships, personal, business, therapeutic, administrative, or personal; choose wisely!

8)  Maintain or initiate ongoing employment or other constructive activity ASAP as a necessary part of rehabilitation

9)  Maintain medical links with one reliable and interested GP

10)  Render the illness incidental to the mainstream of life ASAP, but remember to be always realistic about the true nature of AMD.  Congenial employment is important.

11)  Understand that TIME and PATIENCE are important factors in rehabilitation; carefully maintain momentum at all stages

12)  Avoid self-excusing, concentrate on learning constructive self-criticism, and self-improvement.  Maintain personal vigilance and objectivity.  Aspire to be an example to others of a successful AMD rehabilitation

AMD Creed

Balance Inner v Outer Reality,

Emotions Bad, Detachment Good, 

Apathy Bad, Adrenalin Toxic...! 

Look after yourself, practice healthy living.

Commonsense Rules, OK..!

In the case of more enlightened care for AMDs, there is not much resource required for a very large return in human as well as financial terms, and much of what is needed is just common sense and low-tech application of some basic principles, viz:

1) Effective screening of possible sufferers, and public attitudes alleviated by proper education would potentiate the scope of screening, however this may be carried out.

 2) Separate hospitalisation of acute patients, and cottage hospitals would be sufficient for most cases, especially sub-acute cases.

3) Specially trained staff for any level of AMD care or contact, see 8).

 4) Rehabilitation and management training for AMDs, carers, and for others who may use these skills, such as in public service interface situations.  Prompt and suitable re-employment is mandatory to expedite rehabilitation.

5) Ongoing networking at all levels of AMD care, including personal friends and carers.

6) Drop-in centres for those needing respite, possibly as part of dedicated clinics, also for AMDs to meet and mix periodically with their own kind, also important for optimal rehabilitation, and to counter isolation.

7) Effective networking to help with and promote support, employment, meetings and excursions, information and education, plus AMD input to optimise effectiveness.

8) Avoidance of ‘talking cures’ and their ignorant and ill-educated practitioners.  AMD, especially when acute, feeds on misplaced and ill-advised introspection, as well as ill-advised ambient stimulii. Thus ‘cathartic therapies’, role playing, and ‘group therapies’, are all totally wrong, and even dangerous. 

 9) Stabilise, advise, and rehabilitate, only then introduce AMD facts, figures, and lifetime vigilance, plus, necessary re-consideration of lifestyle and career changes.

10) Support for human genome research that will finally eliminate the illness, and note that for the few who claim that they ‘enjoy’ the experience of AMD, there are thousands who definitely do not.  


Postcript:

How different would the situation  be, now, if Kraepelin had the knowledge and insight, then, to have identified AMD/MDP as just another physiological and/or metabolic disorder, with both cognitive and physical consequences, rather than "the other major psychosis".  The whole history of AMD research, treatment, patient history, public perception, etc., all would have been so different.  But this did not happen, and so, even now in modern times, the misunderstanding,  misdiagnosis, mismanagement, crude medications, labeling plus lack of research and thus postponement of more enlightened treatment, still all regrettably subsist.  If YOU want to be the one to write this thesis, bear in mind the terrible consequences and history of Kraepelin's (unwitting) Curse, and how important it is for all those with the illness, now and in the future, to ensure that this "curse" is at least eased.  If only this awful illness could finally be removed from the human genome, that is the last and best resort!  Until then, there is only good management and rehabilitation to make the real difference between optimal lives, (and freedom from talking cures and other spurious ideas), or still more misery and ever-preventable deaths.

AMDs are, therefore, trebly damned if the genetic origin and physiology of the illness are not understood, coupled with being told that it is all ‘in their mind’, with consequent useless ‘cognitive therapy’ and/or inappropriate medication being foisted on them.  Also, as yet there is no coherent universal AMD management system in place, because that comprehensive management and rehabilitation manual still needs to be written before there is any real hope of lifting Kraepelin’s Curse ! 

 With the advent of such a dedicated Manual, and after such a long wait for proper recognition, at last the adverse experiences of so many AMDs, past, present, will have relevance. Most importantly of all, those experiences will not have been entirely wasted, and the future will also be so much better for those newly diagnosed.

Hopefully, the Dedication from “The Plight Of The Phoenix” is also acceptable for use by future Manual authors, appropriately re-edited:

“Dedicated to those who, in hindsight, should have survived.  More importantly, this Manual is dedicated to those in the present and future, who, with improved foresight and common-sense help, will so easily survive, as never before, and prosper.”

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