Notes on two afternoon sessions hosted by:
Elyn Saks, M.Litt.,J.D. off-site link
Martin S. Willick, M.D. off-site link

On the subject of Schizophrenia and recovery. Much audience participation, comments, questions.

Dr. Willick is a psychoanalyst/psychiatrist, who practices in New Jersey.
Dr. Saks is a doctor who also suffers form schizophrenia and is currently on medications for schizophrenia, having gone through many years of psychotherapy. She is the author of several books on the subject, including her own account, and her courage in exposing to the world her own situation and story, is inspiring to many.

An effort is made in these notes to transcribe them word-for-word, with very little added. Anything additional or clarifying is in [brackets]. An effort is made in the following to attribute accurately all comments, to the correct sources.

Experiences in Recovery

Hosts: There is so much trauma with schizophrenia. They [people with schizophrenia] are not take seriously. [It] should be treated as trauma.

"Schizo" means "split" but schizophrenia does not mean "split personality".

Q- Is it medicine that makes them tired? or is it something with the schizophrenia? A- "Most medicine is very sedating," [but it might also be something with the "schiz" condition as well.] [Some] medicine for depression and anxiety causes daytime tiredness. There are side effects. It is a trade off. [The help from the medicine and the difficult side effects.]

[Elyn Saks, a lawyer, mental health activist, and Associate Dean, studying to be a psychoanalyst, wrote a book on her experiences with schizophrenia (in addition to books on other related subjects, rights of the mentally ill]. She had thought of naming the book "More Beautiful Mind." [laughter].

It reduces the stigma of mental illness [There is still stigma associated with most more serious types of mental illness].

Q-How do you view it?

A- Psychological, spiritual???????

"Don't think it is spiritual. See someone at foot of my bed-See a ghost there. It is a mind disease."

Audience: When all limitations of treating one with schizophrenia.

Evidence-based treatment. Constrains what you can do.

"Insurance companies loved that idea of just give them a pill and that is all you have to do with it."

Comment - Limits it in the school systems today. "constraints in the school system."

Hosts: Reason to use evidence based psychoanalysis isn't necessarily evidence based.

How infancy-education-unsupportive and nurturing parent. Don't think it is childhood that causes seer brain disease.

Audience: Why found Closaril so effective..better than Novane, in time more and more symptoms.
40-50 mg a day. Still have symptoms. Gets intense.

Zyprexa. Weight Watchers. [increase in weight from medicine-a common side effect of some atypical antipsychotics-diabetes also].

Drooling at night. [side effect of son on meds]. Being tired.

Elyn Saks: Convinced could stop medication. Came on and off medications for a long time. Don't wish I was forced to take medication.

A lot of professionals have fear of mental illness. More stigma against [mental illness] than anything else [in terms of health].

My impression is that people who go into mental health have had their own issues or family [who has had mental illness].

Audience: [Woman] I've been on medication 15 years. I'm 30 years old. Have cognitive deficits. [Implying it is a side effect of the medicine]. Is it going to get worse or better?

A- Hard to tell if it is the illness or the medication. Always possibility that medications can interfere with cognition.

Q- Your stand against forced treatment. [directed to Elyn Saks]. How do you balance that with the pain and difficulties of the family?

A - Not totally against. Don't think it is a good idea. - Do I think we should forcibly medicate person to make their families less upset?
No
[Saks'] Last book, forced treatment, rights of the mentally ill.

Q - ......especially to those like ourself. 35 year old son. "I'm afraid of him. He blames us for all his troubles. Should I have a relationship with him or stay away? A - Little kids fall down...but moms after.....Great if families stay connect. Also need to stay safe. [Has been diagnosed schizoaffective].

Brian (audience) "Hear voices everywhere I go. So real. Hear question asked in the wind - Like voices are taking over my life - Mom -
Created language letters are numbers. Clozaril -makes me very tired. Sleep 12 hours a day. On 110 mg of Clozaril.

Hosts: Doctor needs to get consultation. Another opinion. Maybe 100 mg not enough.

Audience comment - Mother [Now] Doesn't hear voices - an occasional voice.

It doesn't work [medicine]. He's been on seven different medications. The original delusion is still there.

Other comment from audience
What affect does high anxiety have on the onset of schizophrenia?
Son had intense anxieties, if the scale was 1-10, he would have been a 35. Can treating the anxiety level help in schizophrenia? Answer - In wartime soldiers don't have a higher incidence. [But] the onset is very insidious. [It can be a gradual process over time]. Value of psychotherapy and dealing with stress. Anxiety is not necessarily etiolic. Can act as a trigger. May have predicated [onset]. Similar to depression, loss triggers it.

Elyn Saks [On the courage it took to write her book of her own experiences and the responses she received]. Some have amnesia of their experiences. I remember all of the experiences. Could have had friends turned against me. [so it took courage on her part to write down her experiences].

A loft of good emails, responses. One said, "Dr. Saks, you really are a space alien and they are trying to poison you." [laughter].

Audience - (from New York). I am conducting a study now on the subject of physical health and mental health. A lot of psychiatrists are not paying any attention to that. [she is disturbed at that fact, physical health, nutrition, etc. is being ignored].

Dr. Saks Medical doctors don't pay attention when psychiatric patients show up in the ER [Emergency Room]. Really important problem. Sent her home having a hemmorage, but because she was a psychiatric patient [they thought] "It is all in her mind".

[Another important problem] - self esteem issues.

SECOND TOPIC:
Beyond Medication, Toward Rehabilitation: The Role of the Psychiatrist

Dr. Willick:
Psychoanalysis or psychoanalysis with therapy
Persons are given medications - 15 minutes per month with a psychiatrist, that's it.
Need to change that.

Hallucinations - gripped by fears - obsessional nature.

Psychoanalysis usually 4x a week - long-term
relationship (long-term) with therapist
One client calls him on the phone "Hey, I'm having some of those crazy thoughts again."
He always calls back.
Client says: "I'm O.K. now, Just wanted to let you know."
Dr. Martin says that his clients' just having someone that he know he can call and that will call him back, is enough for him to get over these type of small crises. He calls him 4x a week like that.

Another client: "I can't feel my face."
Rather than say, "This is a delusion, you need medication," Dr. Willick questioned him about it, "When you touch your face can you feel it?" "Yes," his client says.
Dr.: "If you ..... can you feel your face?" "Yes" he says. "When you .....can you feel it?" "Yes," he says.
Dr. Willick: "Then maybe what you are trying to say is that you have lost your sense of self."
Client: "That's interesting," thoughtfully pausing.

Schizophrenia symptoms "Center dropped out. Lost sense of self." One way to describe in your own terms what has occurred.
"You are the 1st one ever tried to give some explanation."
He didn't come back, so Dr. Willick doesn't know what happened to him. Need someone to be understanding, patient, long-term." You are the first person that has tried to understand what I'm going through."

Explanation/Clarification, not part of program:
What Dr. Willick implied by this story, is any other doctor or other person simply dismissed this person's "delusions," basically told him what he was experiencing was a delusion, and gave him medicine, whereas, Dr. Willick tried to find compassion and insight into what the man was really trying to express, and whether his summation was accurate and correct, it helped the man to feel more stable.

Comments from psychiatric nurse -
This psychiatric nurse who works with a community health care provider, for mentally ill individuals, many MICA patients. Dr. Willick said, "Do you mean then drug abusers?" "Yes," she said, and, in her terms, "indigent persons".

This nurse gave her comment passionately, from her heart, out of her deep concern for those that she cares for and the state of the treatment that they receive, sincerely, as were the majority of the comments from the audience,

"Clients receive 15 minutes a month with a psychiatrist. Prescribe, prescribe, prescribe!!!....to where my arm is not long enough." To the doctor/psychiatrist, she stated with fervor, "You need to offer yourself, not just offer a prescription!!"

These are poor people, indigent. In terms of recovery, if I had to live in one of these places, I would not want to be sane. Where do I get help for my people?" "I asked once, 'has so and so had therapy' Everyone laughed at me." "Psychotherapy being cut - no therapy. Cut funding. Some many don't have a dedicated person." End of comment.

Comment from social worker:
Day programs, etc.
Poor people.
They have part-time doctors, almost retired. See them 2 minutes, if they make the appointment. In the hospital 10 months - no follow up care - just revolving door - costs more money in the long run.

Dr. Willick:
On a positive note [about the state of psychiatry and indigent type people:]
"I practice in N.J. Patients functioning much better in apartments than in hospital" when Greystone closed (NJ psychiatric hospital).

In general - too many patients, not enough professionals, too little pay.

Question to Elyn Saks: What was best for you in your treatment?

Answer: 1. Understanding 2. Dignity and respect.
Dr. Willick: Human component - Doses changed, side effects considered. Even then we don't get full recovery.

Comment about son who has schizophrenia:
[Our] son- 8 years with illness - just turned 30. Working in supermarket. [some improvement with his state, happy about that].

Original delusion "everyone knew him. Everyone hated him. Certain words [struck him], - "that's it," - "almost like he has his own dictionary."
He actually made up his own alphabet, his own language, based on numbers.
"15 mg changed to 30 mg. Zyprexa. Added Abilify 5 mg ? very depressed. Bumped it quickly - had another break. Now not working. Original delusion is still always there."

"Loneliness - major issue - I am his only contact. Won't go to psychotherapy - He went once - [His comment] "you know what they do", he said. In other words, he doesn't like the psychotherapy and won't go back.

"He loves his surfing -loves his music."

Dr. Willick: "Fixed delusions," Learned not fixed.
Meds - for som delusions [even with meds] doesn't go away. Some can still function with the delusions.
"How can he get a part-time job- How can he be directed?"

Notes from transcriber - "How about a coach" if he can't talk to a therapist?"

Dr. Willick:
Tailor recommendation to person.

Question to Dr. Willick about cognitive training programs-techniques. Specific Programs: NEAR and MEDALIA
Dr. Willick: "We have to try them." We need to ask though], "Are they transferable to the real world situation?"

Dr. Willick. More breaks [meaning major relapses]. Bipolar Disorder worse. Probably same for schizophrenia.

LEAP - Listen Empathize .... .....

Comment: In support group for bipolar for a while.
Analyst: "Republican Superego." Hard on people who gave up and went on disability. Had breast cancer. Empathize and understanding can be great for the group.

For Dr. Saks, "You are a good example that we cannot give up on people with mental illness."

Part 3 later this week of May 9, 2009

22 year old - schizophrenia disorder
no insurance --- Medicade ---

4-5 time a week with psychoanalysis
If they have Medicade, cannot pay for 4-5 days a week of psychoanalysis.

Once a week speak to a social worker, one a month to a psychiatrist (for 10 minutes). that's all.

Some psychiatrists might take Medicade
Some social workers are very competent and can engage the client in psychotherapy.

Biofeedback and schizophrenia
Side effect profile of typical psychotics

Labeling someone as functionally disabled and giving them a Social Security check every month
can interfere with the recovery process.

Helpful to pocket book - qualified help in community health center missing
Matter of choice.

Hospital can cost a fortune - if on Medicade [then] disabled.

[Medicade / Social Security check] can impact self-esteem, concept of self.

Mental health system in England much better.
System less coercive than here.
England - providing have health care to avoid problems and risks associated with hospitals.

England ahead of U.S.

W/ doctors not accepting Medicade --- present problem
Son doesn't take Medicare
Son connects with one doctors - hates to pull it and go to Medicare.

160. a visit 300 a month
husband 75 still working to pay for all this.

Dr. Saks "I do think the connection [with the therapist/doctor] is important!"

Elyn Saks - The Center Cannot Hold: My Journey Through Madness - (off-site link)

Pages Related to Schizophrenia Conference

Help for and Insight into Schizophrenia.

Quit smoking help - How to Quit Smoking.

Marijuana Use Linked with Schizophrenia, Anxiety, Depression and Suicide.