20 March 1994

NARCOLEPSY

SCENARIOS OF BEHAVIOUR

In Narcoleptic Patients.

Many of the Patients with symptoms of Narcolepsy have varying types of behavior as the result of their symptoms in early childhood.

A lady told me recently that she was a very quiet shy child, and if visitors came to the house, her sister would have to drag her out from under the dining room table. She had Attention Deficit Disorder ADD (which I regard as the main and root cause of Fantasy or day dreaming, and hyperactive behaviour), but she was not hyperactive due to her retirement from encounters with other people, and/or other children.

She felt she was different and was depressed, and stayed depressed about this all her life. In other words she suffered and still suffers from a Chronic Depression (Is this the Dysthymia that seems to be a new fad in diagnosis).

Due to this, when she did talk to others, she felt left out, and afraid to talk to the active assertive, or aggressive people, but only talked to others she felt were not "too good" for her, as she felt she was worth less (worthless).

When she became interested in boys, then she would pick the less worthy boys, and married one, now has two sons in their teens. The husband (also with some symptom of Narcolepsy), a very bad temper, a wandering womanizer, has left. She is working as a waitress in a bar in the afternoon and evenings, and apparently gets along fairly well doing this. She had been a fairly active drinker of alcohol after work, and is decreasing this at the moment. (Alcohol in lesser doses alerts her, and apparently in larger doses as well, although she has hangovers the mornings after). (In my opinion the person who keeps drinking to alert themselves is an alcoholic going somewhere to happen).

She has found that Valium (Diazepam) tid reduces the bodily and emotional tension that she and other people have to engage in to stay alert and listen to others. This is a chronic state and the idea of the psycho pharmacologists and the sleep researchers that the patient should only take this medication for 2-6 weeks in a theory not believed in by the patients, because the tension returns when they stop the medication, and is aggravated in many by the withdrawal symptoms of benzodiazepines. This period is very variable in amount and time. Therefore they are very eager to return to the diazepam, or whatever one or ones which relieve their tension. At this point the "Regulators" think this is "Abuse." However, even if this is so, the patient is better able to engage in social interaction, and live a slightly better and more efficient life style. This then, requires the use of more than one medication to relieve their symptoms. This principle has been well established in other psychiatric disorders. The medication also needs to be continued for many years in most patients, which upsets the regulators very much. They do not seem to realize that ADD is a life long disability.

She has cataplexy with numerous emotions. Many of my patients with this symptom are too frightened to have an emotion, because they feel so weak, and confused along with the weakness, that they try not to get emotional at all, because they get afraid, they will die when weak. This results in the patient never or almost never being able to say "NO," as this requires them to become very excited and resentful, hostile or angry. The patients then get cataplectic, weak and confused. The patient then, to prevent all this happening says "YES" and ends up doing favours for everyone who asks, instead of saying "NO." They then are "doormats" and have no time to do their own work. She stated this was the way she acted.

She has taken a Real Estate course, but is afraid to start going to work because of the lack of confidence in talking to people in a new situation. This is different from her job as a waitress, and involves considerably different conversation with others. The contact with the Prospective buyer is much less structured than the one as a waitress and, she has had so little practice in this new situation.

A thought struck me this morning--re; Why is she not physically hyperactive? Another lady, S.B., I have seen for about eight years told me she spent almost all of the time in fantasy. This must account for the "Hyperactivity of the mind" rather than the body, and account for the difference between ADD in 184 of 212 of patients and the physical hyperactivity in 96 of 212 patients (88% with hyperactivity and ADD 91%, and eight with hyperactivity without ADD).

(b)Another patient of mine Mr. J.S. talks incessantly, and tangentially, has been told this by several interviewers. When I suggested that he had lack of concentration (ADD) concerning his own conversation, and that he has to keep talking and uses the latter part of his last sentence to keep talking about, which result in his talking tangentially, he agreed with me.

Another scenario is about the hyperactive child (the majority) who only talks to other hyperactive children at recess, and after school. Each leads the other by suggesting some new activity to be able to feel more alert, most of these suggestions are not usually asensible behaviour-otherwise they would not be exciting enough to alert the ADD children. As a result of this they are very likely going to be caught in unsuitable behaviour and get into trouble, e.q., riding other kid's bicycles, stealing in stores, sniffing glue or gasoline, joy riding in cars, smoking pot, using hashish, experimenting with drugs, shooting speed, and then heroin, and later cocaine and crack. I have about 100 drug abusers who told me this was the story of their lives, Along the way they usually got in trouble with the law and have been in jail, many of these patients who have to report for Probation, or to keep appointments, or go to court, got sleepy, lose their memory for the appointments and do not go. They got arrested and put in jail for noncompliance.

One of my patients this week came in a week early for an appointment. Most of them arrive a day late. I stopped getting excited over this and saw them anyway. Most of them are on disability pensions of one kind or another and cannot afford the $2.00 each way to see me once on the TTC let alone twice, One lady couldn't get herself out of the house to go to visit her daughter at a foster home, due to her sleep attacks and great tendency to procrastinate, and the Children's Aid society, in a court hearing took her child into Crown Wardship. They and the judge did not believe my diagnosis or this sort of description of her behaviour as to the reasons she did not visit her child. To carry this thinking further--if all narcoleptic mothers should not look after their children, what has happened in the past. Did not the present Narcoleptic patients get looked after by their Narcoleptic parent or parents? I wonder if there are enough foster homes to allow for the Narcoleptic children to be placed in.

One of the interesting situations, is when the child is asleep or day dreaming in school, and the teacher asks him or her a question to catch the child not paying attention. About 10% are able to answer the question correctly, and of these about 50% do not recall the question. Is this akin to the automatic behaviour of patients who drive home after work from Scarborough to Etobicoke along a six lane double highway, and do not recall any of the trip? In addition about 10% of these got lost and when they come out of this behaviour have to find where they are and then figure out how to get home.

Some of them have, as I have mentioned before, the problem of developing a quick bad temper. This then, colours all of their behaviour and at 15-16 years of age they may be very dangerous to anyone disagreeing with them. Since the TV and the movies show people in a program, they conclude that being shot and beaten up, and then the same ones show up on the following day's program, the youths conclude that violence does not hurt and, as they have to live for excitement only, and end up kicking policemen in the head. After all, it does not hurt. Some of them when kicked back find this out and stop, but not all stop. A large number of both sexes get very agitated at the times they are disagreed with, and then feel they "just have to do something." They then strike the walls break windows, furniture, take overdoses of medication, slash themselves, or smash things etc. After this outburst is over, then they feel relieved of the agitation (temporarily) and are much calmer. This interests me as they do not have the cataplexy that they got after lesser outbursts of bad temper, I certainly have no explanation for this.

Following these outbursts, if they end up in the emergency of a hospital, everyone wonders what is going on, as the patient is now quieted down, and wants to go home and the patient is insisting he is all right. This reminds me of the patients from the Sudbury area who had been fighting, and used to be brought down to the Lakeshore Hospital torn and bleeding and had been drinking and fighting, and in the morning they were calm, shaved and ready to go home.

Occasionally, when people lose their temper, they get into Automatic Behaviour while being violent, and are unable to stop beating the other person until they are pulled away or stopped by about 7-8 large policemen, or interrupted by some loud noise or other happening. One of my patients, Mr. G.H. was bumped by a large black man while crossing an intersection. The black man called him a bad name. The patient said, "I beg your pardon," and the black man repeated the name. The patient took this much larger man down and pounded his head on the pavement three or four times across the intersection, stopping all the traffic. He did not stop this till a truck driver blew his air horn about 14 times (the patient said). At this point, the patient stopped and said to himself "What am I doing?", and immediately got up and ran away before any police arrived. This is an example of Automatic Behaviour. After the happening, the patient had little, if any, recall of the happenings while he was beating the black man. This has occurred with many other patients, who do not recall very well, of even anything about what went on while they were in Automatic Behaviour.

Another thing I have noticed is that in their obsession to do favours for everyone, instead of saying "NO," that may get caught in a "Florence Nightingale Syndrome" when they try to bring home sick Men, Girls or Cats, and cure them of their bad behaviour, their bad tempers, their drug addictions, their lack of ambition, and any other disadvantages they have, usually with disastrous results

This occurs when they get excited when, they have to say "NO," develop cataplexy and feel so weak that then they are going to die, and say "YES"instead. This makes them "Doormats," and they get so busy doing favours that they have no time to do their own work.

This seems to occur when they are out socially and find the person they are talking to asking a question which is answered by, "What did you say?", showing that they have ADD and then the patient sticks to them; because my patient can bitch right back about the listener if the listener bitches of my patient's lack of attention. This means that they both suffer from Narcolepsy, and if they stay around each other long enough they may, marry or have children or both, and that the children are more likely to inherit the condition. I suggested this to a lady once, and she told me it was more that she felt that, the other person was a "kindred spirit" and they could help each other.

When these patients are feeling that their muscles are weak (due to cataplexy with emotion), many tell me that they have difficulty speaking, aphonia, stammering, stuttering, mixing up words, and even making no sense in the sentences. Most of them along with the above also have difficulty swallowing at the time of the cataplexy.

This has led to several patients not being able to eat in restaurants, or at different times-especially when they were apprehensive or frustrated. Probably this attack of cataplexy accounts for many causes of Globus Hystericus.

Many patients have told me they are or have been drinking alcohol in large quantities, and their parents frequently have done the same. This has led to the parents engaging in much marital disharmony and child abuse, which arouses much hostility in the children. The patients tell me that they themselves are agitated, have poor attention, and the alcohol reduces the agitation, and alerts them so they can converse with others. I tell them that, "If they are going to drink to stay alert, they are alcoholics going somewhere to happen!". I would include the history of excessive drinking as one of the diagnostic items in a history to alert the doctor to take a complete sleep history, and that the doctor is likely (65%) to discover the patient has Narcolepsy.

As you can see from all the above, that I am of the opinion that the condition of Narcolepsy begins in childhood with the onset of ADD, Hyperactivity and/or Fantasy, and when the patient decides not to have feelings, then that person is a Psychopathic Personality, as he or she has decided not to have feelings--resulting in their only enjoyment being physiological excitement.

We must also think of other persons who are not that sort of Psychopath, but rather the ones who are chronically depressed and who therefore are locked in one emotion, and do not have the other emotions.

Both of these lead to the situation that he or she cannot recognize the usual normal other emotions in the people they meet, with the result that they misinterpret the other's behaviour and get taken advantage of because of this.

It is my opinion that these people must gradually learn to express their feelings or emotions in small amounts--teaspoonfuls instead of buckets, and then they will be able to;

a. Learn to express their emotions easily.

b. Be able to keep out of so much trouble, caused by the misinterpretation of the feelings of others.

c. Prevent the onset of their feared feeling of cataplexy, the feeling thatused to cause this never gets intense enough to start the cataplexy.

d. They, learn that if cataplexy occurs, they won't die. That if they do this the cataplexy does not occur and the accompanying confusion in thinking also does not occur.

This is not going to happen overnight, but rather it occurs gradually, and at different rates, and different courses of happening in different people.

Another difficulty that occurs is in the group programs that are insisting on getting the patient off alcohol or drugs, or stress, or obsessive behaviour, or into anger management groups or thinking of all of them together.

When a patient with Narcolepsy sits in groups, in which others go on and on about their personal lives and happenings, it becomes monotonous, and the patient gets bored, drifts off and frequently goes to sleep. They are then told they are unmotivated, uncooperative, and most of the time are told to leave the program. This continuing frequently repeating routine is more than a Narcoleptic patient can endure, and so they drift off and may go to sleep. In my opinion, much of the information given by each patient is an infringement of their personal liberty, and none of the business of the others present. I understand that it is much the same for all there, but this is still personal information, and some there seem to be too interested in hearing the stories. Telling these stories of the past, forces the patient to relive the trauma, stress and the attendant emotions of that time, and thus results in further upsetting the patient. "This is called working through the problem." I fail to see that this results in much improvement, according to the stories I get from my patients.

In applying for a job, if the interviewer catches the patient not being alert and sees that the patient has Attention Deficit Disorder, he or she does not get the job. If he does get the job, then he has to be instructed. He may not be able to pay attention to the instructors, and so he has to take the job and get the other workers to help him find what and how to do it. They may be uncooperative and he is told wrong things to do. If he is told correctly, then after awhile the interest in a new job disappears, and the monotony creeps in, and he slows down or makes mistakes or hurts himself. At this time the foreman may criticize him, and he may blow up and quit or get fired for slow work, mistakes, or telling the foreman off, or for any of these four reasons.

In Oct. ‘93 one evening in the Toronto Daily Star, someone quoted that insomnia in the United States occurred in 4% of the men and 3% of the women. In my surveys of Narcoleptic patients, I have recorded that 80% have insomnia. If we turn that around then, I would suggest that all the insomniac patients I have seen have Narcolepsy, and that insomnia is a symptom of Narcolepsy; then we must conclude that many of the 3% and 4% of people in the U.S.A with insomnia must have Narcolepsy. This many more than the estimate of 1:5000 of 10 years ago and 1:2000 three years ago.

Of course if we only diagnose Narcolepsy in SOREMP producers, then we will have the difference between 1:1000 and 1:4 or 25%.

These patients living in the "Doldrums" of this difference, at present are prevented by the regulators from getting alert drugs. This means that there are certainly great numbers missing any possible help in keeping alert and therefore losing much of their enjoyment of life, staying depressed, keeping their symptoms of Nightmares, Cataplexy Sleep Attacks, Insomnia, having bad tempers, and getting into street drugs to help their alertness, and the list goes on.

Another book has been quoted in the papers stating that 10% of the American population has ADD (Attention Deficit Disorder). This would make the incidence of Narcolepsy even higher in occurrence than 1:2000.

I have seen a number of patients who have engaged in Shoplifting. Most of this occurred during childhood, and they usually did not continue. However there are a few who keep at this continually. I will ask further questions of them. There have been several patients who pick up articles in stores, have the money in their pockets, often pay for some or most of the other article(s), and leave the store: only to be stopped outside, and charged with shoplifting. I have taken their histories, and find that they suffer from Attention Deficit Disorder, and apparently they lose enough concentration to forget what they picked up. Most of these patients also have difficulty in keeping appointments, and keep writing things down on pieces of paper to be sure to do the activity. They often lose the pieces of paper, Many patients who, make appointments, either on the advice of friends, finding my phone number in the yellow pages, or have their appointments arranged by their family doctor, never arrive, and never call as to why they did not arrive

This describes the reasons that I built a computer in 1985 from parts, to list these things on several databases, and count them up to show that the diagnosis of Narcolepsy should not be restricted to just Sleep Attacks, Cataplexy and SOREMP producers.

As I have said many times, we should not treat tests, but rather the clinical condition of the patient, and the test should be assessed in view of the clinical findings. If we were doing surgery, and the anatomy inside the body did not agree with the test before the operation, would we operate according to the test, or would we operate according to the observed anatomy? If we do this, we are not practising Medicine, but rather robot medicine, or Medicine suggested and regulated by business planners. The latter are apparently not aware that biological tissues and the associated biochemistry do not operate in the same way as business plans from School of Business or Hospital Administration. There is a journal on the Humanities, the editors of which, must think that the patient must be listened to and informed about the doctor's opinion, the test results, and the meaning of the results.

I am becoming more and more aware of the desires of the administrative types who are trying to bring in guidelines to "help" all doctors to do their work better. I am very suspicious of these guidelines, as you can see from the above example, how it prevents the patient from getting the treatment he or she needs.

If one has to do everything just like someone else ordered, one must then realize that all patients must be just alike (clones), and react just alike to the same dose of the same drugs. All doctors know that this is not so. Therefore, the guidelines are unworkable. I keep wondering just what would happen if the regulators got into guidelines for surgery, and the surgeon had to close the patient up, not once, but several times, when something in the patient's anatomy did not show up just like the guidelines, or a different unsuspected pathology showed up during the operation.

The regulators seem to be able to make up guidelines for medical doctors, because they can count pills, and find some "expert" who does not think some procedure was done correctly or not soon enough. This is wonderful "hindsight."

In the recent Medical Post, which arrived today, the subject of guidelines came up, and someone is espousing them as the answer to every maiden's prayer for better treatment. However this only leads to routine treatment for every condition, and then there is going to be little change in treatment for the variation in illnesses from person to person. Another issue some years ago stated that Sweden had given up issuing guidelines, as they could not keep them up to date quickly enough.

In view of the usual attitude of Medical administrators, this attitude will mean that the patient will be treated as an outpatient, and have all his surgery done in day surgery and he will go home that afternoon, and the 12-year-old daughter will look after him as his wife has been deceased for some time. One of the announcements is from British paper on the discharge of Myocardial Infarction patients after five days being all right! Why do they not have the midwives treat them at home instead-or am I being too sarcastic? Another announcement is the glee with which they say about a new berthing unit in Toronto. They will have the midwives, the obstetrical doctors, and nurses as a team along with the husband, and the wife's siblings there for the confinement. This would be a real three ring circus. I also learn that the midwife trainees are not going to be nurses-as they would be too involved in the Medical Model, and this should not be! In my opinion that means that the midwife will have less training, and be less able to diagnose difficulties in the berthing process.

The Globe and Mail had a letter to the editor from a doctor who had asked a midwife to join his practice part time to look after pregnant women, and she refused. He got the impression that she wanted to take over the confinement entirely.

God deliver me from such a scene. It looks more like the movies, who think that it is OK to show people taking actions. In this modern Berthing Circus, everything is for real, and I am sure the proponents of this have never been in one, and probably do not want to be; in their committee meetings--it will be the best thing for the mother. One or two of my lady patients state that they do not wish to have all their relatives present at their confinements. Recently I heard of a lady, whose child had died as the result of a poor decision of a midwife, thought it was a wonderful experience, and didn't sue the midwife. If a doctor had made the same mistake, she would have likely sued the doctor. Of course, one must consider the occurrence of accidents. This seems to be less and less considered. When did every treatment have to be perfect and successful?

It sounds as stupid as the demonstration and critique of Multiple Personality on the CBC TV tonight, 9Nov93. I certainly would not want any of my patients, relatives, or acquaintances to go to one of their assessment interviews. It seems that they always find what they want to find in the patient. I would like to suggest that perhaps the enthusiasts who can find these things should be hypnotized themselves. I doubt this would find out what was going on. I did some hypnosis many years ago and gave it up, as the patients did not recall what they told me they had done at some date in the past. I decided that the patient and I should talk without this lack of understanding, and that we should talk about what they did recall without hypnosis, and that we then would both get along better, and could discuss what really went on in the world around them. My patients have not become more upset in the wholesale quantity that I saw on the TV tonight, and had to stay in hospital and cause themselves more trouble, and very few have recalled the childhood abuse described tonight. If they recalled the abuse, they didn't go to the extent that was shown in this program of continual increasing psycho pathology, and worsening behaviour. It was noteworthy that the group sessions seemed to cause more mental anguish as the patients continued their actions, and encouraged each other. I regard this as cruel to patients, and belongs in the same class as witch hunts and burnings.

Of course we are not free of modern witch hunts--McCarthyism in the 1950's, sexual harassment at the present time, OHIP reducing payments to doctors, etc. This last has reduced my OHIP payments by 25% for 1993, and I learn that a General Practitioner in Belleville, Ont. has had the same thing happen to him.

Another new fad is that in the Canadian Medical Journal in the last few issues, there seems to be an increasing number of articles written by "Medical Writers." These are graduates in journalism. I do not like these articles, chatty as they may be, as I do not believe their interpretation of the facts, that may or may not have been told to them. There are too many generalizations of conclusions for one thing. In other words I am not getting the opinion of the doctor they are quoting without their interpretation of it to some greater or lesser degree. I do not need their filtration of the information. I am sure the doctor could write it more factually, more succinctly, and more believably.

As far as I am concerned, some pharmacists do not seem to know that there are more than 28 days in a month, as I am forever telling them that 31x4=124, and yesterday Nov. 26 one lady told me that the patient got his pills for two Weeks on the 16th of Nov. and that it was too soon as it was only 10 days ago. She obviously cannot subtract 26 - 7 = 19, and is obsessed with the problem of giving out pills before they run out on a Sunday afternoon, when the pharmacy is closed and the patient has little TTC transportation, cannot borrow the money to get there again, and Monday is a holiday, and the pharmacy is again closed most of the day, etc. Are they trying to make us live according to their big complicated computers?, instead of making sense of common sense. I have often stated that common sense is a rare commodity. This remark also applies to the OHIP plan to put all the pharmacies on line to a central computer so the pharmacist can tell everything about the patient. This will make it easier for the business administrators to make statistical reports and interfere with the doctors' treatment of the patient.

The reason I state this, is that patients are individuals, and statistics do not apply to any individual, (see my comments re surgical operations above). I think that the same things apply to the medical treatment.

5 December 1993

Another thing crossed my mind during the church service last Sunday

When one considers the restrictive nature of the a/m criteria for the diagnosis of Narcolepsy, why do not the researchers and others on committees ever think of the very numerous patients not covered by these criteria, and that they are then forever prevented from being treated with alerting drugs. These patients are therefore not as able to live as well, or work or stop having such bad tempers, etc. Group therapy for them does not work, as I have stated above.

It is my opinion that these so-called people should be castigated for their very obvious restricted thinking and "tunnel vision" of a disease and its treatment.

Other sources of the difficulties for my patients are the regulatory bodies in the USA and Canada, who swallowed this restricted Criteria for the Diagnosis of Narcolepsy. They saw a way to restrict the manufacture and sale of alert medications. This in their mind was probably a method to stop the "abuse of amphetamines." They succeeded so well, that about 3-5 years ago for a time there was not enough Dexedrine manufactured to apply the then number of Narcoleptic patients in the USA.

I presume that they decided to multiple the number of patients by two and only allow that number to be manufactured.

One also wonders what influence must have been pushed on the regulators to change this.

I would like to push the present regulators in a similar direction, as of the number of my patients who have had all night Polysomnography, Only three of 19 or 15.7% have SOREMPS. All the rest of my patients that were sent for tests (61) had no tests, and so no SOREMPS, (which makes the SOREMPS an incidence of 4.9%) and therefore cannot be given alerting medication, although they have very similar clinical histories.

If we apply this 4.9% to my list of 803 (what is left after subtracting the 61 from 864), then only 120 would be allowed to have alerting medications. What is supposed to happen to the 803-39=764 (who are 88.42% of the 864 total) of patients? Are they to be diagnosed as Schizophrenics, Depressions, Behaviour Disorders, Borderline Personalities, Personality Disorders, Hysteria, Anxiety States, Poor Sleep, Stress, Don't Know? , etc. Under these diagnoses they certainly would never have any possibility to get a trial of alerting medication.

If we examine Dr. Thorpy’s statement that they found 8000 patients with Narcolepsy, and we know that he uses the a/m restricted criteria, and if this matches my 4.9% incidence of SOREMPS, then what is going to happen to the remainder 95% or 154,000 patients who also have the same symptoms, and do not have SOREMPS. I can only assume that these patients are never going to get the opportunity to got alerting medications to see if the medications might help their symptoms.

We can trace this restricted dose of the alerting drugs back to the statement of Dement at al. in his 1966 article (The nature of the narcoleptic sleep attack, Neurology, 16: 1: Jan 1966), in which he states "A necessary condition for the diagnosis is the establishment of the sleep-onset REM episode by laboratory test, or inferentially, by finding a history of cataplexy. Patients failing to show sleep-onset REM periods should be relegated to another diagnostic category."

It is my opinion that there must be more than one type of Narcolepsy, and that the above statement is too restrictive, and prevents the proper treatment of most of the patients I have seen more than 46 years. Of my 1380 narcoleptic patients there are 59 patients (5%) who do not have cataplexy.

In my opinion this is gross interference with the treatment of patients by bureaucrats who accept published articles as if they are the Gospels and written in stone.

It has come to my attention as a result of a car accident in an Eastern Canadian city in which a car driven by a 70-+ year old man, with his 80-year-old brother in the front beside him, went through a red light and the car was demolished by another car striking the driver's side of the first car. Apparently the driver had dozed off and gone through the red light as his wife was not beside him who kept him alerted as she usually did and his brother had a1so dozed off.

This suggests to me that if I have assumed that all ADD (Attention Deficit Disorder) children are Narcoleptics waiting to grow up, then in the above case I can conclude that in older aged people some are gradually developing more sleep disturbances.

The sleep "fragmentation" of old age has been described in the literature numerous times. I am suggesting this is the same night wakefulness that occurs in younger Narcoleptic patients, and the same EDS (Excessive Daytime Somnolence) occurring as well.

Therefore, there must be gradual development in the organization of the sleep-wake mechanism as the child grows, and a similar deterioration in this mechanism gradually throughout life, depending on the age and the conditions occurring and/or affecting the brain, and it does not all happen in the first 20 years, and then remain constant. This must also account for the improvement of some of their symptoms, and the increased ability of the patient to move the paralysed limbs and speak and think more clearly, as well as the two out of 600 patients who have shown some lessening of their Narcoleptic symptoms, one of whom seems to have none at the present time. It is possible to assume as well that the growth of dendrites in the mamillary bodies is the reason that about, 50% of Wernicke's Syndrome recover some or much of their memories.

If one thinks of the work of Janice R. Stevens on the growth of dendrites in the brain after strokes, head injury or operations on the central nervous system, in which she states that dendrites grow to find new attachments. These result in connecting the dandrites to different cells than before, and the result in confusion in thinking, making decisions, and she considers this to be one of the causes of Schizophrenia and/or Epilepsy.

It is not a celestial jump in our thinking, to be able to conclude that deterioration due to arteriosclerosis, or other causes of loss of brain cells might start this process as well. And possibly be responsible for the development of the gradual onset of many other neurological conditions e.g., the gradual development of increasing symptoms of Huntington's Chorea, and many other similar situations.

I am of the opinion that this may occur in the spinal cord and perhaps also in the peripheral nervous system such as the bundle of His, giving problems with heart rate control.

I listened to a physiotherapist, from Quebec City 25MAY94, tell the meeting that her group had trained middle cerebral stroke patients to walk, by three methods. The method using two periods of one hour each day gave the most improvement, especially if it were started in the first week after the cerebral insult. She stated that the anterior tibial muscles improved rather early, the quadriceps muscles show a burst of improvement about six months after the stroke, but the triceps muscle in the leg showed no improvement on the EMG.

I wondered if she could apply biofeedback which was used by a Doctor at theHospital for Sick Children. The patients were suffering from Cerebral Palsy, and she found by using biofeedback, that they did not know when their anterior leg muscles and their posterior leg muscles contracted, as both sets of muscles were contracting at the same time when the child tried to move his or her feet. After several months to one year of training with this biofeedback the children in a number of cases could remove their leg braces, and be able to get out of bed at night and walk to the bathroom without assistance. Others found that they only needed a cane when they went out of the house with their parents.

Perhaps this method might help the stroke patients to be able to learn to control their triceps muscles and therefore walk better.

I have given this pamphlet on Scenarios to more than 90 patients. One day one of them when asked what he thought of it said it was his autobiography. Many of them state it was 50% - 95% the story of their lives. One man said, every time he reads it, that he finds more symptoms he suffered from.

August 80/95

I have not written about, the restlessness of the patients in my office. Some get up and walk about the small room, a few ask permission. Others fiddle with the pens or pencils on my desk, jiggle or tap their feet, tap their fingers on the arms of the chairs, fool with the tassel on their umbrella, etc. One young man, who told me that he did not have ADD would turn his head and look at me out of the corner of his eyes. I caught him not paying attention to my conversation at one time and then he admitted he did have difficulty in paying attention at times. I asked him if he had trouble with his neck, and he said no. I then suggested that he was turning his head so his saccades (the normal movements of his eyes to examine what he was looking at), were increased, and that this consisted of movement. Movements when the patient has ADD or cataplexy in a mild form frequently stop the ADD or the Cataplexy and the patient is able to concentrate and/or think more clearly and make their decisions more easily. This is why people have to smoke when they are apprehensive about buying something expensive, or jiggle their feet, legs, knees, or play with objects.

This pamphlet was handed out to many patients. The number of Patients answering was 116. 1 asked how they liked it. One man said that it was his autobiography, so then I asked what percentage of the pamphlet agreed with his symptoms, and life. This is the result of the answers.

One man when asked how much of this was his autobiography replied 110%. Another man stated 128%, and later asked where I had been 20 years ago. I replied right here in my office, and he had spent 18 of the 20 years in jail, due to having a quick bad temper, and getting into fights when disagreed with, especially with police.

I have a number of patients who when asked if they have visual or auditory hallucinations, delusions of persecution or out of body experienced while having cataplexy, answer yes. Now if they have in the past happened to tell this to their doctors or psychiatrists without bringing up their sleep history, then they are automatically diagnosed as schizophrenic. This diagnosis just sticks to them. One must then find out about other schizophrenic symptoms, and the other symptoms of Narcolepsy, to be able to make a more correct diagnosis. There are a few patients who have both illnesses, and for some reason in the last five years there seems to be a new fad in diagnosing "comorbidism" and the writers just give warnings about the dangers of treating patients with more than one disease. It seems to me that I found this out about two days after I started to do my rotating internship beginning in Feb.‘43. Where have all these writers been in the past 56 years?

I discuss with my patients that the onset of ADD starts at 4-5 years of age, and the child is beaten and/or told that if he does not learn to pay attention he will never get anywhere in life. The child then decides he is different, and becomes depressed for the rest of his life. Following this he decides that:

1. He must be nice to everyone,

2. That he must do every favour asked of him.

3. That he cannot answer back because:

4. He is responsible for other people’s feelings.

This results in him never learning to express his feelings. Following this he becomes unable to assess the emotions of others. One has to assess what the other person says, what the other person does, and the play of emotion on the other person’s face.

If he cannot express his own emotions, then he cannot properly assess the other persons’ emotion, misjudges the other person’s motives, and gets conned (taken advantage of) all his life.

When he understands this, then I tell him that it is mandatory that he learns to express his opinion (his feelings) in teaspoonfuls instead of buckets and then the other person will know what he is like inside and is better able to trust the patient, and they will get along better.

One of my lady patients when told that the other person would know what she was like inside, said in a weepy voice, "They can pull my strings!"

I said, "Give them another teaspoonful of your opinion, and let them go the hell by themselves. You are not responsible for other people’s feelings, only your own. I am not responsible for your feelings, and you are not responsible for my feelings". We are only responsible for our own feelings.

It sometimes takes several years for the patient to practise this and get good enough at the expression of his feelings in teaspoonfuls, but when he does, he then is able to say "NO" and all the people who have been conning him get lost, as they can’t take advantage of him anymore. He has to find a whole new group of people to talk to as these previous acquaintances were not friends but enemies who were trying to get the patient to do things which were bad for the patient.

I have taken a long time to develop this thinking from long term observation and questioning of the patients, and much discussion of how they have behaved over the years.

About 2 weeks ago an ENT doctor stated that he had found a number of children who had hearing difficulties, and they had difficulty in paying attention to others and in school. The treatment was not mentioned in the press (as usual). We are only allowed a 15-30 second amount of time to get any news, and there is almost never any reference to the source. I am sure this was on the TV news;

If this is so then these children will also have all the same problems of the ADD children.

To these children we should add the obese, teased children, bullied children, abused verbally, physically, sexually, and other children who are the butt of the childhood jokes . These above all feel different, and become depressed as they feel they are not accepted by the other children. It is my opinion that this leads to that modern diagnosis of Dysthymia.

This then leads to the same four decisions of the ADD children, and they all feel "Put Down" with the resulting hostility to their peers, or anyone else who disagrees with them. It seems to be universal thinking in these children that being disagreed with is being "Put Down".All these children seem to never understand that each child and each person in the world thinks differently and it is not a social crime to be disagreed with, but is patently normal for people’s thinking. If they think it is a social crime and become hostile then perhaps this is one of the reasons for all the killings of others. It seemed universal also that the TV reports of the school shootings were done by other children who felt "Put Down". Does this mean that the children doing the violence to their teachers and classmates had Narcolepsy, or had developed the type of thinking I have just described.

Anyway it shows a great amount of intolerance. I have seen a lot of this, and listen to even more of it on the TV. Many of the TV shows seem to be based on smart remarks to show up someone else, as if that is humourous, funny, controversial or some other idea of show writers, and producers. It is my opinion that it is immature thinking.

January 15, 2002

Figure Skating:
I have been watching this activity for a number of years on TV. They seem to have a lot of trouble with their concentration, shown by the frequent comments of the announcers that the skater has, after making mistakes and/or falling down, to focus to be able to continue. to me this meand that they did not concentrate well before the mistake. I am suggesting that the skater has ADD and with the onset of apprehension about the jump develops cataplexy and his/her muscles are weak, the thinking is confused, and they fall. The remarks by the ones who have fallen numerous times, after they are succcessful, are usually, that they went out to skate and have fun! This suggests to me, that the skater has less apprehension, does not get cataplexy with the difficulty in thinking and the weak muscles, and can concentrate during the jumps. Should the skaters be allowed to have the alerting or the antidepressant medication to overcome this? One could compare this to the horses who recently are allowed to use lasix to prevent bleeding in the lungs during horse racing. They don't rule out the horses from racing for 3years to the rest of their lives. The skaters who used alerting drugs would be forbidden to enter the skating again for years. Is this fair? Should the hockey players who stand around "counting the crowd" in front of the goal, and the opposing team scores, have the same alerting medication?

March 20, 2004

I have noticed over my 49 years of practise that many people show restlessness who have other symptoms of Narcolepsy.

This shows up, even on TV last night when a young man was sitting in a park with his friend, and he started to wiggle one foot sideways. At other times, one lady patient kept fiddleing with the tassel on her umbrella while answering my questions, others lift their heels off the floor, and one sees their knees lift up and down in a tremulous manner. Several patients have told me that they chew English mints, and this helps their ability to attend to other’s conversation.

It is my opinion that these motor activities are the methods used by many patients with Narcolepsy to allow themselves to pay better attention to what is going on around them, and used also as a prevention of falling asleep suddenly in inappropriate places.

Another thing I have begun to notice, is the work behaviour of people, who keep moving from one activity to another all day. They seem to get diagnosed with manic behaviour, hypomanic behaviour, or obsessive behaviour. It is my opinion that they are trying to stay alert by changing their activity as soon as they get bored with their present activity, e.g. M. S. If I am correct in suggesting she likely has Narcolepsy, then her answers on the phone to the police, could have been affected by her confusion of thinking with Cataplexy, during which time she could not recall properly, and the police then have concluded that she lied. If she had Cataplexy, then her statements probably were not correct as her memory was obtunded.

During the period of Cataplexy, the person with Narcolepsy, as I have stated above, tries to stop this muscle weakness and mental confusion by verbal or physical violence. If this happened to M. S.,then her answers were likely to be inappropriate to the situation. This leads to much misintrepretation in the listeners. The listeners without Narcolepsy, always think that everyone can recall all their past perfectly, and if it is inappropriate, then the listeners think that the person is lying. It is my opinion that these Narcoleptic people must have PET scans done to prove what happens to their brain activity, and see if it matches the activity of normal people without Narcolepsy. There are several articles in the literature on this subject, and I regard this as the only way to assess the doctors statements that they did not sexually abuse their accusers, and that the accusers must also undergo the same testing procedure.

E. B Cahoon,