1-2 Apr 07 - Milieu research - 12 hours in the infirmary
I have come home feeling sick, with a sore throat and ear ache, but maybe, like Ralf,
I have a tooth going bad. I was the only nurse for both chronic and acute patients in
the infirmary, and responded to four codes plus taking care of a patient hurt in a
fight, and another who kept falling down on the unit - his falls were well-coordinated,
resulting in no injuries, and he was able to get up when told to get up on his knees
then push up all the way with his arms. He got what he wanted though, attention.
Continuing, Monday, at my HMO in the waiting room for a dental x-ray after seeing
the doctor upstairs - I don't have an infection, but may have put my jaw out of joint,
and suddenly feel much better. April Fool's day, and also Palm Sunday this year,
was a total stress-out at work. Why do I work there? This is the most interesting job
I've ever had. I took the job temporarily after being down-sized out of Digital
Equipment Corporation, a company at one point second only to IBM in computer
sales.
In my job at Digital I travelled world-wide, and couldn't imagine doing anything more
exciting, and most exciting was learning all about time-sharing operating systems,
and teaching this to employees and customers. I wrote three training guides for the
DECSYSTEM-20 computer - Advanced Assembly Language Programming,
DECSYSTEM-20 Monitor Internals, and Software Subsystems for the DEC-20. After
the demise of the DEC-20, I learned and taught VAX/VMS operating system trouble
shooting for field service engineers, then wrote programs for UNIX system
performance analysis Time-sharing, or multi-tasking systems are all about response
to external inputs, and gave me a sense of gaining some insight into mental illnesses
that involve lack of, or inappropriate, responses to environmental stimuli.
So here I am more than fifteen years later working at Bridgewater State Hospital for
the "criminally insane." Most of the patients I took care of yesterday are men I have
known since beginning to work there. Each has an interesting but sad life story, and
at some point I should try to write about each of these - too much for this blog entry.
I got sick yesterday from, in addition to providing care for patients, stress trying to
keep up with the required paper-work and entering incident reports into the
correctional system computer database. Documentation is important. If you didn't
document it, you didn't do it, but some of the paper work is for administrators. Some
of them do roll up their sleeves and come in to help out when staffing is spread thin.
Those who don't really have little understanding of our patients, despite all the
information transmitted on paper and in the computer. It takes being in the milieu
day after day to begin to develop some understanding of our patient population.
When I worked in research with laboratory rats, I was often told nothing could be
learned about mental illness from animal research. I disagree, but no one can tell me
anymore that I have no direct knowledge of mental illnesses, of all kinds. Further, I
have an ever increasing understanding of autism's place in the spectrum of mental
illnesses.
3 Apr 07 - Aftermath of suicide
I didn't know the patient who took his own life at Bridgwater on Friday night, but the
impact is still terrible. I realize all the codes I had to run to on Sunday were related,
and not just because of patients' reactions, but officers being more cautious than
usual -- a few relevant comments are on the bughouse iii (all you need to google it)
bulletin board.
The shock was even worse when one of our long-term patients pulled a plastic bag
over his head. I'm sure it was intended as a cry for help -- he didn't really want to
die. By all rights he should have been discharged to a VA hospital. Only a few days
earlier he showed me the picture from when he was a Marine, in full military dress,
and he was handsome, then and even as the years rolled on. I think he kept getting
time added to his sentence because he would not stop writing to famous movie stars
and singers. Because the letters clearly came from a prison, alarm led to
repercussions.
I had to decline going to work today because I had a follow-up doctor's appointment.
Glad to say I am feeling much better, and a little sorry not to be at work. I am sure
other co-workers are also feeling a little off. Some people try to say what we do is
just a job, but it is not.
4 Apr 07 - Kolevzon et al. on perinatal risk factors for autism
Kolevzon A, Gross R, Reichenberg A. Prenatal and Perinatal Risk Factors for Autism:
A Review and Integration of Findings. Arch Pediatr Adolesc Med. 2007
Apr;161(4):326-333.
OBJECTIVE: To review the evidence for the presence of prenatal and perinatal
factors that affect the risk of autism and autism spectrum disorders. DATA
SOURCES: Relevant articles were identified by searching MEDLINE, screening
reference lists of original studies, and searching major journals likely to publish
epidemiological studies on the topic. STUDY SELECTION: For inclusion in this
review, studies required (1) a well-defined sample of cases drawn from
population-based registers or cohorts; (2) standardized, prospectively collected
obstetric information from birth records or registers; (3) comparison subjects drawn
from the general population with information on obstetric complications collected from
the same source; and (4) a standardized format for presentation of data, allowing for
comparisons among studies. Main Exposures Parental characteristics and obstetric
complications. MAIN OUTCOME MEASURES: Rates of autism and autism spectrum
disorders. RESULTS: Seven epidemiological studies were identified that fulfilled
inclusion criteria. The parental characteristics associated with an increased risk of
autism and autism spectrum disorders included advanced maternal age, advanced
paternal age, and maternal place of birth outside Europe or North America. The
obstetric conditions that emerged as significant fell into 2 categories: (1) birth weight
and duration of gestation and (2) intrapartum hypoxia. CONCLUSIONS: Evidence to
suggest that parental age and obstetric conditions are associated with an increased
risk of autism and autism spectrum disorders is accumulating. Although not proven
as independent risk factors for autism, these variables should be examined in future
studies that use large, population-based birth cohorts with precise assessments of
exposures and potential confounders.
No mention of research on asphyxia in monkeys by Windle, Myers, etc. I see online
response is possible. Tomorrow I plan to attend the Doug Flutie Autism Update
conference, but will be mulling over a concise response to submit on this.
p331 -
"Several investigators have hypothesized that a set of perinatal
conditions that indicate prolonged or acute oxygen
deprivation (hypoxia) to the fetus may be a major
risk factor for neuropsychological and neuropsychiatric
disturbances.67-69 Murray and Harvey70 reported that 3 regions
in the brain are especially vulnerable to perinatal
insult, including the basal ganglia, the hippocampus, and
the lateral ventricles. Neuroimaging studies71 have shown
that the lateral ventricles in particular are larger in patients
with autism compared with controls. Brains of individuals
with autism have also been shown to exhibit
morphological hippocampal abnormalities.72 Prenatal and
perinatal conditions associated with fetal hypoxia are likely
to be heterogeneous in origin73 and may include, in addition
to overt fetal distress, conditions such as maternal
hypertension, gestational diabetes, cord encircling of
the neck, and prolonged labor.74,75
Some indirect evidence also supports an association
between hypoxia and hypoxia-related conditions and autism.
Juul-Dam et al66 found increased frequency of oxygen
treatment among newborns who later developed autism
and other pervasive developmental disorders, but
this association was no longer significant after controlling
for multiple comparisons. Similar results, although
not statistically significant, were reported by Gillberg and
Gillberg.25 Among the epidemiological studies reviewed
in this article, increased frequency of several variables that
may reflect hypoxia-related conditions was detected in
case patients with autism. One study30 found significant
associations with pregnancy-induced hypertension, bleeding,
cesarean delivery, congenital malformations, and daily
smoking during pregnancy. The association with cesarean
delivery should be considered with caution because
it might be confounded by the indication to perform cesarean
delivery, such as a significant obstetric complication.
Other studies identified provoked abortion,26
threatened abortion, and fetal distress as significant risk
factors.31 However, most of these studies assessed only a
few potentially hypoxic conditions."
67. Naeye RL, Peters EC. Antenatal hypoxia and low IQ values. AJDC.
1987;141: 50-54.
68. Msall ME, Bier JA, LaGasse L, Tremont M, Lester B. The vulnerable
preschool child: the impact of biomedical and social risks on
neurodevelopmental function. Semin Pediatr Neurol. 1998;5:52-61.
69. Robertson CM, Finer NN. Long-term follow-up of term neonates with
perinatal asphyxia. Clin Perinatol. 1993;20:483-500.
70. Murray RM, Harvey I. The congenital origins of schizophrenia. Psychiatr
Ann. 1989;19:525-529.
71. Piven J, Arndt S, Bailey J, Havercamp S, Andreasen NC, Palmer P. An MRI
study of brain size in autism. Am J Psychiatry. 1995;152:1145-1149.
72. Kemper TL, Bauman ML. Neuropathology of infantile autism. In: Naruse H,
Ornitz EM, eds. Neurobiology of Infantile Autism. Amsterdam, the
Netherlands: Elsevier Science Publisher; 1992:43-57.
73. Zornberg GL, Buka SL, Tsuang MT. Hypoxic-ischemia-related
fetal/neonatal complications and risk of schizophrenia and other
nonaffective psychoses: a 19- year longitudinal study. Am J Psychiatry.
2000;157:196-202.
74. Cannon TD, Rosso IM, Hollister JM, Bearden CE, Sanchez LE, Hadley T. A
prospective cohort study of genetic and perinatal influences in the etiology
of schizophrenia. Schizophr Bull. 2000;26:351-366.
75. Seidman LJ, Buka SL, Goldstein JM, Horton NJ, Rieder RO, Tsuang MT.
The relationship of prenatal and perinatal complications to cognitive
functioning at age 7 in the New England Cohorts of the National
Collaborative Perinatal Project. Schizophr Bull. 2000;26:309-321.
5 Apr 07 - The Doug Flutie Autism Update conference
I learned a lot today. First, the increased prevalence must be real. When Ralf got
expelled from kindergarten, even though he could read, his was a unique and
unusual case. Today I learned that learning to read early is not uncommon, and
Ralf's pattern of learning to read at age 2, but unable to use normal conversational
speech until he was nearly 6 is frequently observed in children on the autism
spectrum.
The Department of Public Health is about to undertake long-term tracking of children
with autism spectrum disorders. Their latest estimate of prevalence in
Massachusetts is 1 in every 144 children - this was disputed, with figures of 1 in 122
and 1 in 111 cited.
Dr. Vince Carbone gave a wonderful talk on promoting expressive language in
children with autism. He pointed out that questions make up about 50 percent of
everything we say. "How are you?" "What's going on?" "What did I do that for?"
Questions are a major part of communicative intent. Thus he begins with getting
children to ask for things, and without saying please, or using a complete phrase.
This reminded me of Roger Brown's discovery that children's early speech is
monosyllabic, or "telegraphic," and based on their recognition of stressed syllables in
the speech of people around them.
Doug Flutie himself was at the conference today, along with a lot of photographers
and reporters from the news media.
6 Apr 07 - Milieu research, with class
In the infirmary again, with three nursing students assigned to follow me through the
morning. They experienced having to run across the yard to two codes. There were
three codes, but the second was called while we were in the middle of doing an EKG
on the patient we brought back to the infirmary from the first code. The second code
was in ITU, and there is aways a nurse on that unit, so no urgent need to get over
there. The first code was in the chow hall, where there were nurses monitoring the
meal, but without stethoscopes and blood pressure cuffs needed to assess the
patient.
Just before twelve, the three students had to convene with other students over lunch.
That was when I realized I had not had a moment to eat the breakfast I had brought
with me. The students told me as they left that this had been the busiest and most
interesting shift they have participated in all week. The students were here last week
too, and one worked with me in ITU. It is interesting to work with young people
coming into the field. I learned a lot, and hope their experiences in our most
interesting work place are useful in their ongoing education.
7 Apr 07 - Jack's Pack, coffeehouse discussion
Out of work too late yesterday to go home via Ralf's house, so he asked me to come
by today. He needed a haircut, and so did I, and we have found a Great Cuts shop
in Quincy that we both like. I got there around 9:30, and Ralf had just gotten up.
There's a Dunkin' Donuts across the street from his house, so we decided to go over
there for breakfast, and I'm so glad we did. It was the highlight of our day. We got
our coffee and bagels, and sat down in the only two empty seats in the shop, then
found ourselves in the middle of a conversation on war, peace, philosophy, poetry,
and the course of civilization.
The Sidekick section of the Boston Globe was lying on the table we sat down at.
When the man sitting next to Ralf picked it up, Ralf asked, "Oh, could I have a quick
look at This Day in History?"
"Good man," was the response from the man sitting next to me, "That's one of my
favorites too, -- often a good starting point for a discussion."
Ralf was quick to skim the column, then exclaimed, "Henry Ford died sixty years ago
today, at age 83." He gave the paper back and started spreading cream cheese on
his bagel.
Ralf is a self-taught expert on the history of automobile makes, including Ford cars,
so this piece of information will no doubt be securely associated with other events in
the evolution of Ford cars from the Model T to Model A and Mustang, etc.
The man next to me introduced himself as Jack, and next to Ralf was Paul. He told
me they gathered almost every day at Dunkin' for discussions, and are known as
Jack's Pack. We were welcomed to come over any time. They seemed to recognize
Ralf as one of the residents of the house across the street, and two others who were
just coming in the door.
We listened as we ate. Then Jack, speaking on attitudes toward war from ancient
times, turned to me and asked what I knew of Aristotole. I had to admit I knew very
little. Then he gave me a sheet of paper and told me to write down a quote
The least initial deviation from the truth is multiplied later a thousandfold.
Because I am a compulsive note-taker, I then added a few more bits of information on
the sheet of paper he gave me, one being a quote made by Dorothy Day in the
1930s, "Love is the only solution." He then added she lived from 1897 to 1980.
As Jack recited a poem called Work, by Henry VanDyke, Ralf took out his pen and
taking the sheet of paper wrote: Dorothy Day, 1897-1980, age 83, and he put
today's date at the top of the paper.
I found the quote from Aristotle, more on Dorothy Day, and the poem by Van Dyke
via google at:
http://www.brainyquote.com/quotes/quotes/a/aristotle105819.html
http://www.catholicworker.org/dorothyday/
http://oldpoetry.com/opoem/17185-Henry-Van-Dyke-Work
I do know Ralf is capable of much more than sitting on the porch across the street,
smoking, and watching the world pass him by.
8 Apr 07 - Milieu research, chronic pain from lack of circulation?
Two total care patients still, and short-staffed this Easter Sunday. Plus a chronic
care patient complaining non-stop about palpitations and pain from head to foot. He
was the same way Friday, and last Sunday, making life even more difficult in the
infirmary. When I got so sick last week that I went to see a doctor, I couldn't get this
patient out of my mind. Maybe he was feeling as rotten as I did. I took his temp - no
fever. Heart-rate, blood pressure, and peripheral oxygen were all within normal
limits. The doctor could not determine anything wrong. There wasn't much we could
do for him, busy as we were, plus two codes to run to as well. At the end of the shift,
the nurse relieving me and I both checked vital signs again, which were all within
normal again.
Is this fibromyalgia? I went home and looked this up in PubMed. One interesting
article by Katz et al (2007) suggests fibromyalgia may be caused by vasoconstriction
and low level ischemia, which might respond better to physical activity to improve
circulation, rather than trying to rest with feet up etc.
I won't be working tomorrow, because I have to take Ralf to a follow-up dental
appointment. On the way home I realized how yesterday, in Jack's Pack, he had
demonstrated so many strengths. He participated very meaningfully in the
conversation. On the subject of Pearl Harbor, which Jack said was a vivid memory of
his childhood.
"How old were you?" Ralf asked.
"Well, let's see, I was born in 1929."
"Then you were twelve," Ralf quickly responded, and Jack confirmed this.
On what do the letters USSR stand for? Ralf immediately said, "I remember the
Beetles song, Back in the USSR."
The Union of Soviet Socialist Republics was only a vague recollection he said, from
long ago. He never had a reason to have any interest in the USSR.
9 Apr 07 - Dr. Michael Sheff's Mission, dental care for the disabled
Return visit to Dr. Sheff with Ralf this morning. Ralf had cleaning and scaling, and
will return every two months for awhile - next appointment on June 25, because I plan
to be in Europe with my husband from June 6-19.
The waiting room was full of children and adults with disabilities, as it was the last
time we were there. One little girl had such a deformed face - still she appeared to
have considerable zest for life. She certainly deserves the kind of special care that
Dr. Sheff provides. I was so moved.
10 Apr 07 - Milieu research, showers and visits
One of our total care patients is trying hard to overcome his mobility problems. He
was in a cantankerous mood today, as he often is, yelling and cursing one moment,
then smiling and pleasant another. He was more cantankerous than pleasant today
though. Morning vital signs revealed a low-grade fever. Temperature was elevated
until just before change of shift. He also had a bowel accident just before end of
shift, and I was called upon to help get him showered. I went home with wet feet.
Visitors were arriving as I left. I believe this patient's sister planned to visit this
afternoon, so I was glad we got him all cleaned up. I hope he was less cantankerous
with her - he would be a difficult character for a family to take home to care for.
11 Apr 07 - Psychopathy and mental illness
On my mind most of today: The PBS American Experience program on Jonestown,
http://www.pbs.org/previews/amex-jonestown/ how a charismatic con man can lead so
many people astray - very disturbing. One aspect of Jim Jones childhood that would
now be considered very ominous was cruelty to animals, and performing elaborate
funeral services for dead animals.
Also on my mind, and disturbing, the homeless man in our infirmary who required
total care - not the man I had to get in the shower with Tuesday - he is trying hard to
manage self care. I realized, trying to help the homeless man earlier on Tuesday,
that he was deliberately and with considerable force resisting efforts to help him get
dressed. The mental health worker supervisor, who rolled up her sleeves and
helped out on Sunday, had told me that he was moving his arms in the shower, to
wipe water from his eyes. He was sent out Tuesday morning for a complete
neurological exam, and the unit manager told me to complete the discharge
paperwork and call to give report to the hospital. At lunchtime, we went through his
chart, and realized he is not just homeless, seeking shelter. He has a serious
criminal history, and served time for homicide in another state - how can anyone just
serve time for homicide? That should have been a life sentence!
Illegal possession of guns and selling drug are more recent crimes. How scary that
this man has been out on the streets of Boston, even if homeless! The last time he
went to court, he refused to go into the court room, so his case was continued until
later this month. I am usually too busy providing care to take time for careful reading
of patient records, but (though disturbing) am glad we took the time Tuesday.
Psychopathy is seen in many patients at Bridgewater, most of whom are returned to
jail after evaluation. Psychopathy is distinguished from mental illnesses as an
underlying character disorder. I think it should be considered the result of brain
impairment from an early age, but cognitive function is not disturbed as it is in the
mental illnesses that develop after adolescence. As in the case of Jim Jones, ability
to relate to people, to be convincing, and create a following is quite intact. These are
dangerous scary people.
12 Apr 07 - John Adams on the heart and lungs of government
I had to go for jury duty today. Most interesting was the video on trial by jury, which
we were informed dates back to John Adams (1874) constitution for Massachusetts,
in which he wrote:
"Thus it seems to appear that two branches of popular power, voting for
members of the house of commons, and tryals by juries, the one in the
legislative and the other in the executive part of the constitution are as
essential and fundamental, to the great end of it, the preservation of the
subject's liberty, to preserve the balance and mixture of the government,
and to prevent its running into an oligarchy or aristocracy; as the lords
and commons are to prevent its becoming an absolute monarchy. These
two popular powers therefore are the heart and lungs, the main spring,
and the center wheel, and without them, the body must die; the watch
must run down; the government must become arbitrary, and this our law
books have settled to be the death of the laws and constitution."
http://press-pubs.uchicago.edu/founders/documents/v1ch17s12.html
The essential functions of the heart and lungs were therefore universally understood
at that time, and therefore used as a simile for jury trials and house of commons.
How well do present-day obstetricians understand the physiology of the heart and
lungs?
Also today in PubMed, another paper on autism as a long term outcome of neonatal
encephalopathy:
van Handel M, Swaab H, de Vries LS, Jongmans MJ.Long-term cognitive
and behavioral consequences of neonatal encephalopathy following
perinatal asphyxia: a review. Eur J Pediatr. 2007 Apr 11; [Epub ahead
of print]
13 Apr 07 - Milieu research, 16 hours with long term BSH patients
Forced before I could get out of the infirmary and out the door (the front slammer
door). So I spent the evening shift with patients I have known since beginning to
work at Bridgewater State Hospital, more than fifteen years ago. Each of these
patients are worth discussing from the standpoint of developmental problems,
preceding any "psychotic break." For future discussion in greater detail: (1) Sidney
Poitier look-a-like, (2) the "locksmith" graduate of the School for Defective
Delinquents, (3) Asperger syndrome (first diagnosed with cerebral palsy) most
meticulous worker in the chow-hall, (4) the one-arm patient who had me lookup his
case in the Harvard Law School library (where I sat and wept), (5) explosive rage
murderer (reminiscent of a similar inmate long-ago sent to maximum security prison
to serve his life term for poisoning his children then axing his wife to death), (6)
old-timer reform-school class-mate of several other patients at BSH, (7)
self-righteous loner, (8) quiet child who murdered his family, long ago, (9) the
charmer who murdered his wife, reminiscent of another much more remorseful
patient, (10) space alien remnant of long-term alcohol abuse. Some of these
patients are sons of elite Massachusetts families - psychopathy and mental illness
are not confined to the lower classes or dysfunctional families. Family dysfunction
should be the expected outcome of having to deal with a mentally disturbed child.
The evening was spent mostly getting medications ready for the more than fifty
patients on this unit. I passed out thousands of dollars worth of pills to these
patients, some in doses so large I felt compelled to check the order (especially if
recent). The range in variation of tolerance and responsiveness to these
pharmaceutical substances is huge.
14-15 Apr 07 - Weekend to crash, recover, and surf the internet
Ralf had wanted to go back to visit Riverview again Saturday, but I was too tired to
get up early and drive to the cape. So we went for a walk on Nantasket Beach - so
much closer to home, and the sea air revived me.
Surfing around on the internet, I found some interesting things from (or about) my
place of employment:
An interview with a psychiatrist who recently left Bridgewater State Hospital to write
fictional accounts of his experiences:
http://www.roderickanscombe.com/html/ir-author_interview.html
A paper on psychopathy and psychosis in murderers, based on neuropsychological
testing, and a psychopathy checklist (Hare RD: The Revised Psychopathy Checklist.
Toronto, Multi-Health Systems, 1991) using information gathered from inmate
records:
Nestor PG, Kimble M, Berman I, Haycock J. Psychosis, psychopathy, and homicide: a
preliminary neuropsychological inquiry. Am J Psychiatry. 2002 Jan;159(1):138-140.
In addition to fictional and academic accounts, I found Information on some of our
most infamous criminals (front page news stories and Court TV cases) is now
viewable by anyone at any time via google.
16 Apr 07 - Milieu research, phone calls from mothers
Today is Patriots' Day in Massachusetts, with reenactment of Paul Revere's Ride, the
Battle on Lexington Green, and especially the Boston Marathon. A nasty nor'easter
storm caused cancellation of Paul Revere's Ride and the Battle on Lexington Green,
which made it a little easier to get out of Lexington and onto the highway this
morning. When I got to work, the wind was so strong I had to push hard to open my
car door, and my hair was wet and blown wild before I got through the first slammer
door where bags are inspected and ID cards given up.
The rest of the day I spent indoors in ITU, and short-staffed again, I was the only
nurse on the unit today - almost as bad as being the only nurse in the infirmary.
Outside phone calls are always interesting, but often distracting. Today I got two
calls from mothers. Both of their sons had been discharged from ITU shortly after
morning rounds.
The first caller had spoken with the psychiatrist earlier, and called back to ask that a
happy birthday message be conveyed to her son, and that she would visit tomorrow
rather than today because of the weather. Shortly thereafter her son was brought
back to ITU. He said he needed a time-out from the usual daily schedule. He did
seem cheered by the message that his mother called to wish him a happy birthday.
The second caller left her number, which I included in a report to the treatment team
on the patient's unit. On her last visit she did not get to see her son because he was
in ITU. She correctly surmised that her son was probably not taking his medications.
She wants to encourage him to take them, but said she is feeling left out, and doesn't
want to come to visit again unless she knows she will get to see him. How well I can
identify with the feelings and concerns of these mothers.
17 Apr 07 - Isn't there enough trouble? Why should anyone need a gun?
A sickening sense of sorrow is everywhere in the aftermath of the shooting rampage
yesterday at the Virginia Tech University. I watched the campus convocation from a
pedicure chair across the street from Ralf's house. We also learned that the
Vietnamese shop owner's cancer has spread. She is a year younger than Ralf. Her
husband, with his own hands, has completely remodelled the shop for her, and it is a
beautiful place. I go there really to relax and be pampered.
Before going across the street, I went next door to the Dunkin' Donuts, and there was
a man in his U-Haul shirt who got up and greeted me as if he had always known me.
He then explained his missing arm, "I was only 19 when I got hit by a drunk driver
back in 1981, and I had head injuries too." So he is the same age as Ralf. He went
on to explain that he started having seizures ten years later, and now has to take
Dilantin, which keeps him in a continuing mental fog. He works though, for U-Haul,
but isn't right now, because he fell on the job and caught himself with his left arm,
which broke and is now in a cast. He was sweeping out one of the trucks, which he
explained he can do because he invented a device that lets him use a broom with his
left hand only. He says he has tried to get a patent on his invention, but no one is
interested.
The van pulled into the parking lot of Ralf's house across the street. They were
home from the day program they go to. So I said goodbye. "We're going to the
library this afternoon," I explained.
"Be careful crossing the street," I heard called out as I went out the door. I always go
down to the light in front of the pedicure shop.
Ralf and I went to the library for some GED study. He is working on algebra, and
prefers working through the problems on his own. I am hopefully a little moral
support, sitting there with my laptop.
There was much more to my day. It was high tide, with the nor'easter still raging, as I
started on my usual route down Morrissey Boulevard. The road was flooded, so I
had a little tour of Dorchester, trying to find my way around the flood. It is an old, and
still beautiful part of Boston, but also where so many homicides have been committed
lately. Why, I wonder, should anyone need to own a gun?
18 Apr 07 - So much more to be learned about those who endanger society
Email from a friend who lives quite near the VT campus:
Dear friends and family,
When I was teaching I was always aware of how vulnerable a classroom is to
intruders. The Amish children in PA, Columbine, the school in Scotland are
testimony to how right my feelings were. I was always in fear that something
would happen to the children in my care. The events of the past two days are
evidence again of how vulnerable our children are.
Please pray for all of us in the Commonwealth of VA. For these children are
ALL OUR CHILDREN.
LOve and prayers, Loretta
She is so right, a teacher's responsibility is huge. I listened to the press conference
from VT this morning, and how concerned the young perpetrator's creative writing
teacher had been.
Students at Harvard have now expressed concerns that such a tragedy could also
happen here. How well aware they must be of the many mentally unstable people
who gravitate to Harvard Square. The homeless used to use the libraries and
classrooms for shelter, but no more. Security has become much tighter. One of the
patients I worked with a few years back at Bridgewater State Hospital was found
washing his socks in the bathroom of one of the classroom buildings at Harvard, and
charged with trespassing. He is one of many sad homeless people trying their best
to get by on their own, when really in need of assisted living or asylum somewhere.
That's what the state hospitals were built for.
Today I read an article on long-term outcomes of people with autism and Asperger
syndrome: Cederlund M et al..Asperger Syndrome and Autism: A Comparative
Longitudinal Follow-Up Study More than 5 Years after Original Diagnosis. J Autism
Dev Disord. 2007 Mar 6; [Epub ahead of print] - very discouraging. Asperger
syndrome is so much more hopeful a diagnosis because language, reading ability,
interest in learning, and other strengths make it difficult to understand why such a
child should not recover completely. I have been up and down this roller coaster with
my own son, Ralf, who is so gifted and so with-it in so many ways. I won't give up,
and hope he won't either. What is missing is the motivation to take charge, become
meaningfully employed, and keep the job.
In Genesis (3:19), Adam is told he will eat by the sweat of his brow. Work, like
language and earthly possessions, is a human universal. Children with autism grow
to adulthood without useful language, without work, and without ownership of wealth
or possessions. They remain dependent and in need of life-long care. The fate is
the same for those who develop mental illness later. Yet hope is held out for
"recovery" and return to life in the community - false hope.
Cederlund et al. investigated instances of criminal offence among individuals with
Asperger syndrome, because this has been the topic of some discussion, and
possible relationship to psychopathy.
"Seven individuals with AS (10%) were reported to
have been involved with the police and the law for
various acts of crime. In this age group in Sweden, a
rate of 10% criminality is not surprisingly high (National
Council for Crime Prevention, Sweden, 2005).
Nevertheless, the nature of the acts of crime performed
by the young men with AS was rather ‘‘severe’’ in
several cases, and visualized difficulties with perspective-
taking, and difficulties in appreciating the consequences
of their actions, which was also reported in an
earlier study (Murphy, 2003)." p. 11 (of online manuscript).
We have patients on the autism-Asperger spectrum at Bridgewater. They do fit the
further description by Cederlund et al.:
" ... Criminal acts were not reported at
very high rates, but the acts of crime were sometimes
odd and reflecting the lack of common sense that is one
of the key issues in AS." p 11.
One of our AS patients explained why he stabbed his boss with a knife, "I wanted to
see what would happen."
Living together in society is a survival instinct. Not even the most committed loner
can live totally without the benefit of others. Far more needs to be learned about
murderous mental aberration. I have often wished more research was being
conducted where I work.
20 Apr 07 - Milieu research, infirmary patients
Trying to focus on my poster for IMFAR May 3-5, but responded to a desperate
request to come to work in the infirmary. I should never say no. It is always a
challenge, especially when I am the only nurse on the unit, and I always learn
something new that I never knew I didn't know. It always provides new insights - data
by way of observations on mental states outside my often too narrow focus on
autism, which broaden my view and clarify how the behaviors of people with autism
differ but also often are similar to aberrations characteristic of other psychiatric
disorders.
Today, in brief, a phone call from the case manager (in the Department of Mental
Health) of the total care patient who was sent to the medical/surgical hospital (Dept of
Corrections) last week. He wanted info. I took his number and gave it to the unit
director, who told me the patient had surgery Monday for displacement of vertebrae
in his upper spinal column that was compressing the cord, and responsible for his
quadriparesis. Apparently his case manager did not know about this, only that the
patient was absent from court this week. Concerns remain in my mind about the
patient's record of illegal gun possession in Boston, where violence is rampant right
now, and no one seems to know who the ringleaders are.
Another younger patient, member of a gang, and gangs create problems in prison as
well as on the streets. Efforts are sometimes made to block communication between
gang members, which can be tricky in determining what units patients can or cannot
be housed on.
Another patient remains very needy. He asks for motrin, but then becomes more
shaky and seems to suffer more pain. He seems to have no energy. Psych meds
either don't work, or cause other physical problems. Suddenly I was reminded of the
discussions of mitochondrial disorders in some people with autism. I mentioned it to
our doctor. Interesting, but totally time-consuming to have to drop everything to
attend to this patient.
The other total care patient is much better! Unlike the illegal gun patient who just
had surgery, he continues to get up and charge up and down the corridors with his
walker. He seems to want so much to get well, but he may also not have as much to
fear as the patient with illegal guns.
Another difficult patient, with diabetes, but refusing insulin because he claims his
mother died of hypoglycemia a few years ago. He took an interest in how high his
blood glucose levels were, and finally consented to insulin that he watched me draw
up. Many of his discomforts soon went away.
Many more interesting patients, but I'm out of time now this evening.
21 Apr 07 - Return to Riverview - the GROW and LIFE programs
Ralf and I returned to Riverview today, and were given a tour of the campus and
overview of new programs. Most impressive is the GROW (Getting Ready for the
Outside World) program for students aged 19-22. How I wish this program had been
available for Ralf. Still, although they have 85 students in the program, the waiting
list is long. More such programs are needed. Most of all the focus of the program
shows understanding of the most serious long-term problem of people with Asperger
Syndrome, not being able to participate in the world's work (via employment, a
normal expectation of most people). Like Ralf, most remain dependent, and at best
in a group home like his, which is not that different from assisted living for elderly
patients with dementia. Where is the rehabilitation?
We were told about the LIFE (Living Independently Forever) program, and I think I will
look into this.
22 Apr 07 - .New evidence (from Africa) favoring a return to nature's wisdom
New in PubMed:
van Rheenen P, de Moor L, Eschbach S, de Grooth H, Brabin B. Delayed
cord clamping and haemoglobin levels in infancy: a randomised controlled
trial in term babies. Trop Med Int Health. 2007 May;12(5):603-16.
"In traditional African home deliveries the umbilical cord is cut after placental
descent into the vagina (Lefeber & Voorhoeve 1997), but in hospital deliveries in
resource poor settings immediate cord clamping (ICC) is the routine standard of
care." p603
"Like in other parts of Zambia, over 50% of women deliver at home (Stekelenburg
et al. 2004). Especially nulliparous and grand multiparous women, and women with
a prior caesarean section, are advised to deliver in hospital. Those who are able to
pay the user fees and live in the vicinity are more likely to deliver in hospital." p604
"Pregnant women were randomised to either DCC or ICC. ICC was the routine
standard of care in Mpongwe Mission Hospital at the time of the trial, and was
usually completed within 20 s of delivery. In the DCC group the umbilical cord was
clamped after the cord stopped pulsating. The cord was palpated every other 20 s
for cessation of pulsations and clamped when pulsations were no longer observed.
The exact time was recorded by stopwatch." p604
"The decision to clamp after cessation of pulsations was based on the fact that in
many delivery rooms in resource-poor settings a clock is absent or not functioning
(own observations)." p613
"Effective interventions are urgently needed to improve child survival in malaria-
endemic areas. DCC is a simple, cost-free and safe delivery procedure that might
offer a sustainable strategy to reduce early infant anaemia risk when other
interventions are not yet feasible." p613
23-24 Apr 07 - Milieu research, and work on my poster for IMFAR
Another day of recovery after 16 hours in the infirmary Monday. Our total care
patient is still improving, and still in large part through his own efforts. He was
standing at the window yesterday when I came onto the unit. For vital signs and
finger sticks he came down the hall to the treatment room, which is much easier in
our environment than having to take the equipment down to his room, and he came
to the nursing station with other patients for medications.
Another patient took a lot of time and attention yesterday, a man who decided to
refuse treatment for his diabetes. I did finally get him interested in doing a finger
stick to see how high his blood sugar was - it was off the high end of the meter, and a
urine dip stick was highly positive for ketones, also evident on his breath. The doctor
sent him to the emergency room of Brockton Hospital, from which the patient was
quickly returned because of his refusal for further testing and treatment - he returned
just before 10:30pm (change of shift time), He demanded, and took, all his psych
meds, so hopefully he settled down and was less trouble for people today. I just got
a call, and was told today was about as crazy as yesterday. I didn't ask if infirmary
patients presented any special problems today. I agreed to work again Friday.
Tomorrow and Thursday I want to go to yoga class, as I did today, and get all the
pages for my IMFAR poster presentation printed out. I have an online version (with
references and supplementary info) at: http://www.inferiorcolliculus.org/imfar.html.
25 Apr 07 - Update to conradsimon.org
Finally, I got around to making updates to conradsimon.org, which I had started to do
over a year ago. These include links to Dr. Morley's new website
autism-end-it-now.org, and inferiorcolliculus.org, which I setup as a follow-on to
conradsimon.org, and on which I posted a proposal to look at function in the inferior
colliculi via fMRI in children with developmental language disorders.
I tend to leave things in an in-progress state. That includes also
placentalrespiration.net, which I setup shortly after posting my proposal on
inferiorcolliculus.org. It was during a yoga class, with the instructor telling us to keep
our breath moving - always, I suddenly remembered Maslow's Hierarchy of Human
needs (Abraham Maslow, Motivation and Personality, 2nd ed., Harper & Row, 1970),
with physiological needs of highest priority. The diagram in Wikipedia correctly lists
breathing first at the bottom of the pyramid. I immediately decided to setup
placentalrespiration.net as a place to collect information in support of the importance
of continuity of respiration at birth. Too often I have seen statements such as "a little
oxygen deprivation at birth is ok," or "plasticity of the infant brain can overcome any
impairments caused by oxygen insufficiency at birth." No, oxygen is the most urgent
ongoing need for all species dependent upon aerobic metabolism. It is the infant
heart, not the brain, that recovers better than in adults. Infants can be resuscitated
and survive longer than the four to five minutes available to reestablish respirations
in an adult after cardiac arrest or suffocation - these are the infants with low Apgar
scores persisting for five minutes or more, but they will suffer neurological
impairments.
Proponents of the new tradition of clamping the umbilical cord immediately at birth try
to say that not enough evidence is available on the safety of delayed clamping. How
ridiculous is that! On placentalrespiration.net, I am trying to gather all the evidence
(data from research) going back at least 130 years. Present day medical
researchers tend to be completely ignorant of the history of their field, yet completely
sure of statements they make with great authority about "evidence-based medicine."
This is scary. Whose advice can we depend on for maintaining good health?
26 Apr 07 - The inferior colliculus
I have added this blog to inferiorcolliculus.org, which I chose as my extension to
conradsimon.org because (a) I feel quite sure these midbrain nuclei will prove to be
among the most important centers of the brain, and (b) because I received emails
from people who found conradsimon.org when looking for info on the inferior
colliculus in google. I just checked, and conradsimon.org still comes up third in the
list, after wikipedia and Buffalo School of Medicine, and now I see that
inferiorcolliculus.org is fifth!
Following is an email I got from a researcher a little over five years ago:
Hi Eileen
Just a short note to thank you for your website regarding Autism and your
son Conrad. As a novice cognitive neuroscientist I found it absolutely
fascinating pointing to some very interesting links between hearing and
autism which seems like a promising research area. I'm Australian and
currently doing a postdoctoral research in the UK in hearing/fMRI....my
real interest though is in auditory temporal processing using brain imaging
techniques like fMRI/ERP etc, and have some ongoing interest in learning
disabilities.
I was just scanning the internet for info on techniques to more accurately
locate the medial geniculate body from MRI scans (very difficult) and came
across your info on the IC, which I have found is suprisingly active for
such a small structure in the fMRI data I am currently analysing (brain
stem structures being notoriously difficult to image for several reasons
but primarily their size).
Not having much expertise in subcortical physiology, I wasn't aware of the
oxygen hungry nature of IC relative to other auditory brainstem
structures.. which is probably why I can see it so clearly in this fMRI
data. Also this current experiment examines the relationship between brain
activity and inter-aural decorrelation (an important auditory cue in order
to localise sound).....so to cut a long story short the info you posted has
prompted more than just a few ideas about IC, fMRI activity/ auditory
temproal processing and maybe even some research possibilities in autism
etc. so THANKYOU VERY MUCH (and Conrad!).
Best Regards
Dr Bill Budd
MRC Institute of Hearing Research
University Park. Nottingham NG7 2RD, United Kingdom
About a year and a half later results of his research were published:
I posted some of the images from this paper in my research proposal, at
http://www.inferiorcolliculus.org/pr04.html.
I notice that Dr. Budd is co-author on a paper that just came out on auditory function
in schizophrenia:
Matthews N, Todd J, Budd TW, Cooper G, Michie PT. Auditory lateralization in
schizophrenia--mismatch negativity and behavioral evidence of a selective impairment in
encoding interaural time cues. Clin Neurophysiol. 2007 Apr;118(4):833-44.
Australia is a long way off, but I may contact him again to see if his group might have
any interest in the research I proposed.
27 Apr 07 - Milieu knowledge
I worked on my former unit today - all long-term patients, most serving life sentences.
One man was conspicuously absent. I was told later by one of our correctional
officers that this patient has been discharged to a Department of Mental Health
hospital. This patient has resisted discharge for at least six or seven years. He was
incarcerated at the age of 20, and spent more than half his life at Bridgewater State
Hospital. He resisted discharge because he was so afraid he could be driven to do
something unthinkable again.
The officer told me he just received a letter from this patient reporting how happy he
is. Now he wrote, he is going to have to save up to buy a wallet, because he now
buys soda from vending machines, and also spends money at the cafe and used
clothing store at the DMH hospital.
The people most knowledgeable about the patients at Bridgewater are the
correctional officers who work a regular unit, some of them for twice as long as I have
worked at the hospital. Many of them have uncanny insights on how mental illnesses
have changed the lives of patients, and how they grapple with the crimes that
changed their lives completely.... There is much more to be said on this subject, and
much to be learned from these font-line care givers.
28 Apr 07 - Milieu research: Rising above it
Today in the infirmary, the patient sent out a few days ago to the Brockton Hospital
ER, with blood sugar over 1000, was much more compliant. He still maintains some
sort of grudge against our weekday doctor, but with blood sugars still high (on
regular insulin only) he agreed with our Saturday doctor to start taking long-lasting
insulin. This same patient is sharing a room with a man who is almost totally blind,
and despondently discouraged. The diabetic patient took it upon himself to help his
roommate in every possible way, guiding him into the bathroom, walking with him
down the corridor to med-line, encouraging him to drink more fluids and finish his
lunch. It is wonderful to see a patient rise so magnificently to the occasion, and it
reminded me of two other patients many years ago who demonstrated the ability and
courage to reach out to someone less fortunate.
The two patients who came to mind had both been deplorably difficult. One used the
foulest language toward staff, and he clearly had spent many idle hours dreaming up
as many nasty things as possible that he could hurl out as insults. The other patient
was less verbal, but would save up urine and excrement that he would sling at staff
and other patients. Both of these monsters had spent much time in ITU seclusion
rooms, which is where their friendship may have developed.
It was at a game of cards that they revealed a more humane attitude. They asked
me to play spades, a game in which you need a partner. One badly head-injured
patient asked if he could be my partner, and I agreed. I did not want to reject him,
and knew that the monster twosome could go off and find a more challenging match
for their skills at this card game if they wanted to. To my surprise they agreed to
allow the head-injured patient into the game. He was incredibly slow figuring out
which card to play, and often played a card of the wrong suit, then began the slow
process again of finding a card of the correct suit. The two expert partners were
wonderfully patient, and found several small-talk topics of discussion while they
waited for my partner to come up with an appropriate card.
After the game, I thanked the patient pair of players, and told them how impressed I
was to see how far they had come from the time when they had obviously been
dealing with huge problems of their own. One of these two men is still at Bridgewater,
the other was discharged many years ago to a DMH hospital, and I do hope his
progress has continued.
30 Apr 07 - Autism Awareness Day
Plans to attend the Autism Awareness Day at the MA State House were made after
attending the Doug Flutie conference April 5. I am so glad I was able to get up early
and go to this with Ralf - tired as I was, having worked an extra shift Sunday night.
We took the commuter boat from Hingham to Rowe's Wharf in Boston, and I took my
camera - see pictures below.
We were informed (as at the Doug Flutie conference) that in MA autism prevalence is
now at 1 in 122, according to statistics from the Department of Education gathered to
determine funding needs for special education, and that one percent of every male
child born now may develop autism. Several items of legislation have been
proposed, and passed by the House. They now go to the Senate. We were urged to
go upstairs and visit our representatives and especially senators, to tell our stories.
Ralf and I went up to Senator Susan Fargo's office. She is chair of the Committee on
Public Health. Two (or maybe three) years ago she invited me to come in and speak
with her after I inquired about submitting a "citizen's bill" to require delivery room staff
to record whether or not newborn infants were breathing on their own before the
umbilical cord was clamped. My intent was to draw attention to the dangers of cutting
off continuing oxygen delivery from the mother before breathing is established.
The research papers of Baskett et al. (2006) and Milsom et al. (2002) have now
provided information on the incidence of "respiratory depression" or low Apgar
scores at birth. Because the current obstetric "standard of care" includes clamping
the umbilical cord immediately at birth, the statistics on respiratory depression
represent the small percentage of infants who do not begin breathing before the cord
is clamped. The statistics are similar to those for the current increased prevalence of
autism.
Should failure to breath immediately at birth be considered pathological? More
reasonable would be to view infants slow to begin breathing as outliers on a
statistical bell curve of time of first breath. As noted by William Harvey in 1653,
pulsations of the umbilical cord provide evidence that an infant (removed by
Cesarean delivery from its dead mother) is still alive; and Charles White in 1773
pointed out that full transition from placental to pulmonary respiration cannot be
expected to take place at the instant of birth.
Respiratory depression at birth, or failure to transition immediately at birth from
placental to pulmonary respiration, is associated with low Apgar scores, and
neurological damage. Damage in the brain is likely to affect the auditory system as
shown in experiments with monkeys, and impairment of the auditory system in human
infants can be expected to impede language development in human children.
That the auditory system is damaged by a brief period of oxygen deprivation at birth
is the reason that this should be investigated as a possible cause of increased
prevalence of autism. Clamping the umbilical cord before the first breath is not safe,
and every effort should be made to change this present-day obstetric protocol.
See http://www.autism-end-it-now.org/, a website setup by retired Michigan
obstetrician George M. Morley.
Quincy Bay on a rainy Monday morning
|
On the roof of the Massachusetts State House.-
outside the window of Senator Susan Fargo's
office. This had to be the highlight of our trip
into Boston for Autism Awareness Day!!
|
View of Boston from the roof.
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View of Boston with Castle Island in the foreground on our boat trip home.
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Bridge to the Long Island Homeless Shelter - formerly a TB hospital
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Webb State Park, Weymouth
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Back to the houses for sale in Weymouth.
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Evelene Milorin & her son - "Autism is 24/7."
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Following are a few pictures of our trip, by commuter boat, into Boston
for Autism Awareness Day.
