Chris.Brown@f223.n163.z1.fidonet.org (Chris Brown) (10/03/90)
Index Number: 10804
Hello all. I've been reading this echo for a few weeks. It's very
gratifying to read of others who insist on relating to others on a
basis other than their disability, and yet its warming to read the
compassionate tone that issues connected with disabilities are
dealt with.
I notice some people whose allergies sometimes exacerbate health
problems associated with disablities, and there are some others
with problems which are increasingly associated, in some instances,
as symptoms of chemical sensitivity, such as some kinds of
epilepsy, and autoimmune disorders, such as lupus.
It's a bit of relief to see that others have been told their
various very real physical problems are all in the mind. Without
ignoring the importance of attitude on illness, and on coping with
disablities, I understand very well the frustrations of those
who've talked about doctors explaining away problems as simply
symptoms of stress, or scrwwed up emotional needs.
In Ottawa there are now a frew thousand people diagnosed as
suffering from chemical sensitivities. We have a variety of
systemci reactions to pollution, including Centeal Nervous System
dysfunction, digestive disorders, reproductive disorders, and so
on. A study by the Ontario Ministry of Health found symptoms
affectin pretty well every system of the body, with effects ranging
from "mild discomfort to total disablity".
A similar but more up to date study was recently done for the NEw
Jersey State Department of Health by Nicholas Ashford of MIT, and
Claudia Miller of the University of texas. It found that there was
reasonable grounds to suspect enviornmental sensitivities as a
cause or significant contributing factor in CNS dysfunction. They
recommended exploring enviornmental causes of of illness in
patients where symptoms of sensitivities were present BEFORE
INVOLVING THE PATIENT IN POTENTIALLY DAMAGING PSYCHIATRIC
INTERVENTIONS.
The mental health community in Canada is slowly responding.
Several institutions in government, health care provision and
consumer sectors are trying to encourage the practice of checking
certian psychiatric patients for chemical sensitivitiy as a cause,
and the mental health community may soon start rescuing those
psychiatric patients whose problems are caused or exacerbated by
UNDIAGNOSED chemical sensitivity.
I hope that if YOU are connected with any organization for the
disabled that you will pass on this information, and give any
feedback as to what kind of response it receives.
Meanwhile, I will continue to draw strength from reading and
sharing the understanding comments it seems so many people in this
echo have for each other, and when I can, pass on any support or
help available to me.
Remeber, with respect to haveing rights, In canada you have to be
disabled in order to have a leg to stand on!
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!163!223!Chris.Brown
Internet: Chris.Brown@f223.n163.z1.fidonet.orgChris.Brown@f223.n163.z1.fidonet.org (Chris Brown) (10/09/90)
Index Number: 10974
you might be interested to know that the Ashford Report out of MIT
for the NewJersey State Department of health suggests that manic
depressive disorders may in fact be caused by chemical
sensitivities, and that taking medication for central nercvous
system dysfunction (manic-depression) may actually be harmful over
the long term if the problem is caused by sensitivities. I'm not
saying drop your medication suddenly...a transition would have to
be managed carefully. What I will say is that we have several
members in the Ottawa Branch of the Allergy and Enviromental Health
association who have been previously diagnosed as psychiatrically
ill, who have since found out that their central nervous system
problems were caused or severaly exacerbated by sensitivities to
natural and synthetic chemicals.
I am not your doctor.
CNS problems experienced as reactions to chemcials in the sensitive
include headache, depression, exhaustion, fatigue, weakness,
insomnia, hyperactivity, concentration problems, loss of short term
memory, anxiety, irratibility, elation, slurred speech, loss of
co-ordination, nightmares, seisures, convulsions, confusion,
nervousness, hysteria, crying spells, emotional changes,
personality changes, learning disablities, low tolerance for
stress, shaking or trmors, aggression behavioural problen,
neurotic,a and so on.
OBVIOUSLY THESE SYMPTOMS CAN BE CAUSE BY A VARIETY OF OTHER THINGS
UNREALTED TO SENSITIVITY, AS WELL.
Most of the suicides in this group have been manic depressive
reacting people who have been trashed by medical or social service
professionals unfamiliar with the problem who have dismissed their
direct ecperience of this problem, which is similar to knowing that
you have burned your hand on a stove or to know if someone is
standing on your foot, as all in the mind.
It has taken me some time to get past being a victim, and I'm glad
to see there are others who havve managed to do that in this echo.
I hope sysops will extend the reach of the disability echo
throughout FIDONet as much as possible.
Do any states kick in funds?
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!163!223!Chris.Brown
Internet: Chris.Brown@f223.n163.z1.fidonet.orgRusty.Ferguson@p2.f13.n123.z1.fidonet.org (Rusty Ferguson) (10/10/90)
Index Number: 10996
CB>disorders, and so on. A study by the Ontario Ministry of
CB>Health found symptoms affectin pretty well every system of
CB>the body, with effects ranging from "mild discomfort to total
CB>disablity".
Can you tell me how to get my hands on this?
CB>A similar but more up to date study was recently done for the
CB>NEw Jersey State Department of Health by Nicholas Ashford of
And this one as well.
CB>sensitivities were present BEFORE INVOLVING THE PATIENT IN
CB>POTENTIALLY DAMAGING PSYCHIATRIC INTERVENTIONS.
I just spent two weeks on a phsy. unit. I needed to be there as there are
environmental stresses that contributed to my depression. However, not
totally so. It is not yet known in my case if lupus contributes at all, but
I believe it does, but by controlling my outlook on the enviromental
stresses I can stay in control. It seems to be working so far. There
is something that builds in me, a rage, that comes from nowhere that I can
determine. It could be physical (lupus) or it could be from years of
hidding depression. It is hard to say. But my main reason for responding
is that while in the hosptial phsy. units I noticed several people that had
symptoms of lupus especially the rash on the face. I mentioned this to my
rheumatologist and he said that there are indications that between 20 to 50%
of those in mental hospitals have an increased antibody production. I
found this distressing, in that, I had to explain to one psychologist and
several others the possible connection with lupus and mood swings.
My Dr. also agreed that there was massive need for education of mental
health workers and he didn't understand why the information had not gotten
to them.
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!123!13.2!Rusty.Ferguson
Internet: Rusty.Ferguson@p2.f13.n123.z1.fidonet.orgChris.Brown@f223.n163.z1.fidonet.org (Chris Brown) (10/10/90)
Index Number: 11033
The Report from the province of Ontario is called "Report of the Ad
Hoc Advisory COmmittee on Environmental Hypersensitivity
Disorders. It is a bit out of date now, as it was first published
in 1985. Don't forget to ask for the appendices when you write, as
the appendices include a section called "symptoms reported by
patients" which shows that people with sensitivities, whether
immune-system related or not, can have symptoms affecting pretty
well every system of the body. Fortuantely, few few people have a
lot of symptoms in each system....most of us have a few symptoms in
each system, and only intermittently, depending on exposure.
That report is availabe from THe Ontario Ministry of Health
c/o Minister of Health
Evelyn Gigantes, M.P.P.
Queen's Park
Toronto, Ontario
M7A 1A2
The Second report I mentioned is called "Chemical Sensitivities, a
report to the New Jersey State Department of Health" by Nocholas
Ashford, M.I.T., and Claudia Miller, UofTexas. (That should read
Nicholas Ashford).
It is not surprising to hear increased immune reponse in psych
patients. Certainly many people with sensitivities have central
nercvous system responses to their sensitivity, with effects
ranging forom mild discomfort to total disability.
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!163!223!Chris.Brown
Internet: Chris.Brown@f223.n163.z1.fidonet.orgRusty.Ferguson@p2.f13.n123.z1.fidonet.org (Rusty Ferguson) (10/13/90)
Index Number: 11101
CS>The reason why is probably that the mental health workers
CS>don't wasnt to be out of a job. my feeling is that if more
I don't believe that, I'm not saying your wrong, I don't know
that. I've not run into that, with the medical professionals that
I brought it up with, they have been very receptive of toward
having the information. One nurse even came to me once to ask me a
question about lupus. On the other hand, I don't always feel
comfortable informing the expert. I think my primary care doc is
very good, but I feel that his lupus knowledge is somewhat
lacking. I stay with him mainly because I know he cares, he even
called once while he was on vacation to see how I was doing. On
the other hand, the other day he said that my kidney infection was
making the lupus flare. I don't know, does he just want to
downplay things or does he really not know? I'm not sure. Kidney
problems often go along with the type of mood swings that I have
had, that along with the blood test that indicated decreased renal
function make me wonder about his statement. On the other hand,
I've noticed with other doctors when I described something, they
tend to look for the least serious cause. Is this part of their
training? I wish I knew, but it is beginning to look that way. He
is STILL so quick to say that my inabitlity to help with the family
move last weekend was physiological. He said it MIGHT be. No
way! Considering my diagnosis one would think he would believe
me. He keeps saying "I think your lupus is not that bad." I agree
with him, mine is, at least at this time somewhat mild. But mild
lupus is kind of like a mild heart attack, you don't freak out and
assume the worst but you dang sure don't dismiss things either.
His words though don't always support his action, he takes the
necessary test and prescribes the medications that treat the lupus,
all the while downplaying it, even at first trying to make be
believe it was not real. My point in all of this, is while my Doc
is not perfect, I thoroughly believe he does care. But I did come
across two that didn't. One who sent me to a state mental hospital
because she wouldn't call my Dr. That makes no since, I had
insurance with 100% coverage, all she had to do is what I asked and
she wouldn't do it. It was time for her to go home. Then the
first doctor at the state hospital wanted to punish me, told me
"the state of Tn. takes a dim view of what you have done." I
didn't try to rob a bank or harm anyone other than myself yet I was
treated like a criminal by this doctor. I wouldn't call attempted
suicide a good thing to do, but I had done nothing to deserve that
kind of treatment. Needless to say, I was in pretty bad shape
after my visit with that doc. But then finally my doc stepped in
and got me out of that place, I would have gotten worse in there.
No doubt about it in my mind. BTW, I did give this Dr. (shrink,
the one that got me out) a copy of a lupus pamphlet concerning
mental problems with lupus. At that point, he did say that lupus
could be contributing to the condition. I agree with that, it
could be adding to it, it probably is adding to it, but it was not
the entire problem. I'm lucky to have at least two Drs. with an
excellent bed side manner. The third one believes me when I say it
hurts (but his bed side manner is horrible but with time we too are
communicating better). Progress is being made both physically and
mentally.
Oh well, you got me going again. >Grin<
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!123!13.2!Rusty.Ferguson
Internet: Rusty.Ferguson@p2.f13.n123.z1.fidonet.org