Category: Schizophrenia

Ways to Learn More About Schizophrenia

girl-3195810_1920Once someone hears the word “schizophrenia” from a doctor as a possible diagnosis, they and/or their family often want to learn as much as possible about the illness. Which is wise, since there is significant misinformation and misunderstanding of schizophrenia. Over the years, I’ve compiled a list of various ways you can learn more.

General Resources:

https://www.helpguide.org/home-pages/schizophrenia.htm Offers some very specific advice not always found in other guides.

https://www.livingwithschizophreniauk.org/modern-treatments/ A very comprehensive guide, addresses all the typical information plus issues like debt, depression, and mental health care for people who are caregivers of a person with schizophrenia.

http://www.schizophrenia.ca/learn_more_about_schizophrenia.php

http://www.bcss.org/wp-content/uploads/2008/02/basic-facts-141.pdf  A helpful online booklet about schizophrenia in printable form.

https://www.nimh.nih.gov/health/publications/schizophrenia-booklet/index.shtml Another helpful online booklet, has a PDF you can download.

http://www.schizophrenia.com/family/perstory5.htm Personal stories by family members about what they saw happening to their loved one as they began to develop schizophrenia and what they recommend if you think you or one of your loved ones may be developing the illness.

www.nami.org

www.namihelps.org

  • Free information: NAMI has brochures and fact sheets on the illnesses, adult mental health system, data practices laws, dealing – with a crisis and understanding the criminal justice system.
  • Classes:  NAMI has classes and programs that may be of interest to the families of your clients. Hope for Recovery, Family-to-Family, and Children’s Challenging Behaviors.
  • Support Groups: NAMI has support groups for families and for persons living with a mental illness.
  • Help Line: NAMI provides information on locating resources and navigating the mental health system.
  • Educational Conferences: NAMI hosts educational conferences with great speakers and information for providers, families and persons with a mental illness.
    • Special Topics: NAMI holds workshops on retaining custody when seeking residential services for a child, Evidence-Based Practices (EBP), and dealing with a crisis.

Hope For Recovery Workshops (held Saturdays from 9:00 to 3:00 unless noted; call NAMI-MN, 651-645-2948.)

 

Resources for Families:

Forums for family members of people with schizophrenia to talk to each other about how to help their loved ones or get support and advice

http://forum.schizophrenia.com/category/family

https://www.facebook.com/groups/friendsfamilyschizophrenia/

http://www.healthcentral.com/schizophrenia/c/120/158043/forum-helping/

http://www.supportingfamilies.org.nz/resources/mental-health-info/schizophrenia.aspx

 

Blogs written by people with schizophrenia disorders

Vlogs on YouTube by people with schizophrenia disorders

  • Rachel Withers

 

Resources for people with schizophrenia:

Forums where people with schizophrenia talk to each other online

 

Books about Schizophrenia:

The Complete Family Guide to Schizophrenia: Helping Your Loved One Get the Most Out of Life, by Kim T. Mueser, PhD and Susan Gingerich, MSW, 2006, The Guilford Press—a very thorough, practical, and easy-to-read guide, highly recommended

I Am Not Sick, I Don’t Need Help! Helping the Seriously Mentally Ill Accept Treatment: A practical guide for families and therapists, by Xavier Amador, 2011, Vida Press

Surviving Schizophrenia: A Manual for Families, Patients, and Providers, by E. Fuller Torrey, M.D., 5th edition copyright 2006, HarperCollins Publishers–an excellent resource, covers the nature, causes, symptoms, and treatment of schizophrenia, as well as how people and their families survive this illness

Diagnosis Schizophrenia: A Comprehensive Resource, by Rachel Miller and Susan E. Mason, 2002 Columbia University Press–a great resource, includes many first-person accounts by people with schizophrenia, as well as chapters by professionals on a wide range of issues from hospitalization to rehabilitation

The Everything Health Guide to Schizophrenia, by Dean Haycock, 2009, Adams Media–an excellent resource with straightforward and easy to understand explanations

The Center Cannot Hold: My Journey Through Madness, by Elyn R. Saks, 2007, Hyperion Books–an excellent memoir about living with schizophrenia

 

National Resources for Schizophrenia/Mental Illness:

American Psychiatric Association

1000 Wilson Blvd, Suite 1825

Arlington, VA  22209

703-907-7300

www.HealthyMinds.org

 

Mental Health America (formerly NMHA)

2000 N.  Beauregard St.

6th Floor

Alexandria, VA  22311

1-800-969-NMHA (6642)

www.nmha.org

 

National Alliance for Research on Schizophrenia and Depression (NARSAD)

60 Cutter Mill Road, suite 404

Great Neck, NY  11021

516-829-0091

www.narsad.org

 

National Institute of Mental Health (NIMH)

Public Information Branch

6001 Executive Boulevard, Room 8184, MSC 9663

Bethesda, MD  20892

www.nimh.nih.org

Early Psychosis: Learning to Recognize Psychosis Early On and What to Do About It

For schizophrenia, symptoms like psychosis can often start in the mid-to-late teen years. Sometimes no one realizes that the person is having psychosis, which means they don’t get treatment as quickly.

For several years now, one focus in schizophrenia research and treatment has been identifying and treating people with psychosis (and possibly schizophrenia) early on in the course of their illness. It is thought that, in general, the earlier a person gets treatment, the better they will do overall. (JAMA. 2013;310(7):689-690. doi:10.1001/jama.2013.8804)

There are a lot of signs that sometimes point to someone starting to have psychosis, including sudden drop in school or work performance, trouble concentrating, not trusting others all of a sudden, not taking care of appearance or hygiene like they used to, having strong, inappropriate emotions or no emotions at all, and spending way more time alone than is typical for the person. However, these signs can also just be signs of typical teen/young adult behavior, or signs of other issues (other mental illness, drug and alcohol abuse), so it’s critical to get the opinion of a professional, preferably a mental health professional with some experience with people with psychosis.

Recently, the National Alliance on Mental Illness (NAMI), a nationwide non-profit organization, posted a thorough article on how to identify psychosis early on, what it is, what you can do, helping people with psychosis get the help they need, and working with school staff to work with the person with early psychosis. They include how to recognize early signs of psychosis, different treatments, therapies, resources, and support programs for people with the psychosis and for their families.

Sometimes, a person who’s beginning to have psychosis may not understand that they have psychosis, or may not want to get help. Here is a helpful tip sheet posted in the NAMI article above that addresses ways to engage a person in treatment and things to avoid.

For information about your local NAMI chapter, look on their national webpage for a search window based on what state you live in (halfway down the page, on the left), or call their national hotline at 800-950-6264.

Here in Minnesota, there is a Youth Psychosis program at the University of Minnesota, which provides consultation with psychiatrists about medications, therapy, school consultations, and education with the family of the person with psychosis. For questions or to set up an appointment, call 612.273.8710.

The group I run, called Living with Schizophrenia, can accept people new to the disorder as well, but the focus is not specifically on early psychosis, but rather on skills and support for people at any stage of the illness. However, I do have a packet of information about schizophrenia and related illnesses as well as about how to access available resources in the Twin Cities. Contact me for a copy of the packet if you’d like one.

Resources 2

Several weeks ago I posted about urgent mental health resources for people with schizophrenia and related disorders. This post is a follow-up, a post about less urgent, more long-term resources. Please note some of these resources may not be available for those who live outside of Minnesota. Also, while I have tried to make sure all this information is updated and accurate, sometimes things change without my knowledge, please let me know if there are any errors in this list.

Getting yourself or your loved one the right treatment as soon as possible will minimize the illness’s impact. However, because of the nature of the illness, some people with schizophrenia don’t believe they have a problem and resist the treatment they need. The book “I Am Not Sick, I Don’t Need Help” by Xavier Amador gives some very useful advice on this subject.

In this second list is information about therapists, CADI waivers, home health nurses, ARMHS workers, and Community Support Programs. Look in the coming weeks for part 3, which addresses housing, foster care providers, PCAs, and job training.

Therapists:

Many people with a schizophrenia disorder can benefit from some sort of talk therapy. They often do best in a large clinic with clinicians who are experienced with their specific issues; I specialize in working with people with psychotic disorders and do individual, family, and group therapy at Psych Recovery in St. Paul. Here is a list of clinics that commonly provide services to people with schizophrenia:

CADI waivers:

Community Alternatives for Disabled Individuals (CADI) Waivers are a separate program that offers funding for home and community-based services with the goal of keeping people with serious mental illness out of the hospital or other institutions. More information can be found here and here. If possible, you want to get a case manager/social worker to help you with this application, but if none is available, the client can fill out the application here. For a list of county offices that may be able to assist you, call 1‑866‑333‑2466.

Home health nurses:

Home health care nurses are nurses who come to the client’s home and set up their medications in a weekly pill container. The nurse can also assess the client’s physical and mental health. These home health nurses can be requested by physicians (in order to get covered by insurance) or a case manager. Another way to get a home health nurse is to request a waivered program assessment from the county. There are several programs that the consumer may be able to access and the county is required to complete an assessment if one is requested. The waiver programs offer financial programs for in-home services to help individuals with mental or physical disabilities continue to live in their homes. To request a waiver program, call the county at the number listed in the case manager section. Finally, a person can call a home health nursing agency (e.g. Abbey Health Care, Aspen Medical, Dakota Valley) themselves and ask for an assessment as well.

Adult Rehabilitative Mental Health Services (ARMHS) workers:

If a client has Medical Assistance, they may qualify for an ARMHS worker. A case manager can make the referral, or the client can call to an agency that offers ARMHS services. The referring agency will do an intake and assess the need and do a treatment plan. Usually issues that allow an ARMHS worker to assist is with paperwork, budgeting, maintaining an apartment, and other independent living skills. For a list of ARMHS providers by county, see here.

Community Support Programs

These are programs offering various resources like case management, housing assistance, and drop-in centers. Drop-in centers-these are like clubs for people with mental illnesses, they are places where people can go where people won’t judge them, there are many recreational activities and social opportunities available through these centers. The following is a list of drop-in centers, listed by county.

Anoka County

  • Bridgeview CSP at 7920 University Ave. NE Fridley, MN 55432 call 763-783-7440 (free transportation available)

Carver County

Dakota County

  • Guild CSP at 130 South Wabasha Street, Suite 90,St. Paul, MN 55107, call 651- 291-0067
  • Horizons CSP at 3450 O’Leary Lane, Eagan, 55123, call 651-395-5783

Ramsey County

  • Resource CSP at 651 University Ave. W., St. Paul, 55104, call 612-752-8670

Hennepin County

  • Charaka CSP at 7888 12th Avenue South, Bloomington, 55425, call 612-752-8350
  • Lighthouse CSP at 1825 Chicago Ave. S, Minneapolis, 55404, call 612-752-8200
  • Northside CSP at 1309 Girard Ave. N, Minneapolis, 55411, call 612-521-2116
  • Plymouth Drop-In at 1900 Nicollet Ave., Minneapolis, MN 55403 call 612-977-1282
  • Northwest CSP at 7000 57th Avenue North, Suite 100, in Crystal, call 612-752-8300
  • Seward CSP at 2105 Minnehaha Ave., Minneapolis, 55404, call 612-333-0331
  • Vail Place-Hopkins at 809 Mainstreet, Hopkins, 55343, call 952-938-9622
  • Vail Place-Minneapolis at 1412 W. 36th St., Minneapolis, 55408, call 612-824-8061

Scott County

  • Anchor Center at 742 Canterbury Road S., Shakopee, 55430, call Cindy at 952-496-8541

Resources: How to Get What You Need for Recovery

There are a variety of resources available to people with a schizophrenia / schizoaffective disorder, but I have found that people are often not given much guidance as to what these resources are or how to access them. Often people tell me that they don’t even know what they or their family member will need. So I have compiled a brief summary of some of the more important resources for recovery. Please note some of these resources may not be available for those who live outside of Minnesota. Also, while I have tried to make sure all this information is updated and accurate, sometimes things change without my knowledge, please let me know if there are any errors in this list.

Getting yourself or your loved one the right treatment as soon as possible will minimize the illness’s impact. However, because of the nature of the illness, some people with schizophrenia don’t believe they have a problem and resist the treatment they need. The book “I Am Not Sick, I Don’t Need Help” by Xavier Amador gives some very useful advice on this subject.

Due to the list being so long, I have separated it into two parts. This first part lists more urgent needs, the second part will address resources a person will benefit from over the long term.

In this first list is information about psychiatrists, NAMI, Social Security Disability, medical insurance, mental health case managers, and crisis resources.

Psychiatrists: The vast majority of people with a schizophrenia disorder do much better on antipsychotic medications. Your family member will need to get connected with a psychiatrist for these medications. Keep in mind that there is a shortage of psychiatrists, so there may be long waits to get in to see one. If your family member is in crisis, take them to the ER. Sometimes family practice doctors will be willing to prescribe antipsychotic medications for a limited time while a client waits to get in to see a psychiatrist. Your best bet for finding a psychiatrist is through your family member’s insurance–call or look up online and ask for a referral.

NAMI: The National Alliance on Mental Illness (NAMI) of Minnesota is a non-profit organization dedicated to improving the lives of children and adults with mental illnesses and their families. NAMI Minnesota offers education, support and advocacy. NAMI Minnesota offers more than 500 free classes and presentations and over 60 support groups each year, and was recently recognized with prestigious national and state awards for its advocacy successes. I have heard many people say that the support groups and education classes offered have been of enormous help to them. There is a specific program called Transitions for education and support for young adults and their families, as well as a youth-specific website. Contact Andrea Lee for the youth program at 651.645.2948 ext. 106, e-mail alee@namimn.org, or for general classes or support groups, go to namihelps.org or call 651-645-2948.

I highly recommend the NAMI resources, and encourage all of my clients and their families to get in touch with them.

Social Security Disability benefits: Many people with a schizophrenia disorder will not be able to work full time. If this is the case for you or your family member, it’s probably a good idea to apply for disability benefits to get some financial help. Keep in mind that these benefits can be cancelled at any time if your ability to work improves enough that you no longer need them. There are two general types of disability benefits, SSI and SSDI. If you have worked a certain number of hours, you’ll qualify for SSDI, if not, you’ll qualify for SSI. But you don’t have to worry about which one you qualify for, they can figure that out for you. To apply for disability benefits, go to the government online application or call 1-800-772-1213. (A smaller number of people may qualify for a program called RSDI, see here for a further explanation.)

Sometimes people’s first application will be denied and they need some extra legal help in getting the right information in their application. If you are denied, call a law firm that deals with these issues. There are some that do pro bono or sliding-scale fees, such as Southern Minnesota Regional Legal Services (651-222-4731).

Medical Insurance–Medicare, MinnesotaCare, and Medical Assistance (MA): It is vital that people with a schizophrenia disorder have some sort of health insurance. If they are not working due to their illness and aren’t on a family member’s plan, they are likely eligible for Medicare, MInnesotaCare, and/or Medical Assistance, which is Minnesota’s Medicaid program. Apply for Medicare through their online application here, MinnesotaCare here, and apply for MA through their online application here.

Mental health case managers: Case managers are trained people, usually social workers, who are very familiar with the “system,” in that they know the ins and outs of how to get clients certain services and benefits. To apply depends on the county that the client lives in:

  • Anoka County: call 763-422-7326 or 763-422-3283
  • Carver County: call 952 442-4437
  • Dakota County: call 651-554-6000 or 651-554-6424
  • Hennepin County: Call Front Door Access at 612-348-4111
  • Isanti County: a provider (therapist, psychiatrist, etc) can call 763-689-1711 for a referral
  • Ramsey County: call 651-266-7890
  • Scott County: call 952-445-7751
  • Washington County: call 651-430-6484.

Crisis resources:

Sometimes a person with a schizophrenia disorder will experience symptoms getting out of control, and often they are not able to get in to see a psychiatrist the same day. If a person seems overwhelmed by symptoms, seems at a point that they might harm themselves (or others), or if they are not able to care for themselves due to symptoms, they are in crisis. There are several options if someone is in crisis. They can always call 911 or go the Emergency Room of their preferred hospital, they will be assessed and possibly admitted to the psychiatric unit of that hospital.

If it doesn’t seem like the person needs hospitalization, you could call a crisis service. One such services is Crisis Connection: 612-379-6363 or 1-866-379-6363, from any location. Alternatively, you could use this online crisis resource locator.

The following is a list of crisis numbers for counties in and around the Twin Cities:

  • Anoka County-Mental Health Crisis Outreach-763-755-3801
  • Carver County- Mental Health Crisis Program, available 24-7, provides both phone assessments and on-site crisis management. 952-442-7601
  • Chisago County – Crisis Line 1-800-523-3333
  • Dakota County Crisis Response Unit at 952-891-7171, which provides 24-hour telephone or on-site response
  • Hennepin County Community Outreach for Psychiatric Emergencies (C.O.P.E) To reach our mobile team, call 612-596-1223, available 24-7.
  • Isanti County- Crisis Line 1-800-523-3333
  • Mille Lacs County – Crisis Line 1-800-523-3333
  • Ramsey County, 24/7 Crisis Hotline 651-266-7900. Also, with more limited hours, Urgent Care for Adult Mental Health. Walk-in crisis services at 402 East University Avenue, St Paul, MN 55130, M-F 8am-7pm, Sat 11am-3pm.
  • Scott County– Mental Health Crisis Program, available 24-7, provides both phone assessments and on-site crisis management. 952-442-7601
  • Washington County-crisis outreach at 651-777-5222

If you live outside the Twin Cities area, here is a list of crisis numbers, listed by the county that the person in crisis lives in.

Also see Resources Part 2, which covers information on therapists, home health nurses, CADI waivers, ARMHS workers, housing, vocational training, and community support programs.

New results for treatment of negative symptoms in schizophrenia

Boy sitting among daisies

Most people associate the word “schizophrenia” with its positive symptoms–hearing voices, seeing visions, having paranoid thoughts. However, negative symptoms can be as difficult as positive symptoms. Negative symptoms refer to symptoms where something is less than expected, such as one’s face showing less emotions than average, one having less ability to get things started, and having less interest in activities than one used to.

For years, there have been medications that target positive symptoms, but there aren’t many medications that target negative symptoms, and they are not always effective. However, the research continues, and now there’s more hope on the horizon for treatment of negative symptoms. An article cited on ScienceDaily.com from the European College of Neuropsychopharma-cology sheds more light on these medications and what they can do.

Small Talk 3: Ending a Conversation

Sometimes it can feel awkward to end a conversation, even more so here in Minnesota where we have “the long Minnesota good-bye,” which drags it out further. However, you can certainly develop skills to make ending conversations easier and smoother. There are many reasons for ending a conversation, including running out of time, needing to go somewhere else, running out of things to say, or the other person seems bored or distracted. When you feel like it’s time to end the conversation, try these suggestions:

  1. wait until a pause in the conversation or the other person is finished speaking
  2. use a nonverbal gesture like standing up, moving toward the door, looking at your watch or picking up your coat or glancing away
  3. do a verbal summary of what you’ve been talking about, like, “I’m glad your sister is feeling better,” or “yeah, I’m tired of watching the Vikings lose, too”
  4. make a closing statement, like, “Well, I have to get going” or “Anyway, got to get back to work” or “Well, it’s been fun talking,” Make sure they understand the conversation is ending, like they wind up what they were saying or say “Ok, see you later.” If they don’t, be more direct and say something like, “It’s been fun talking, but I have to go now.”
  5. say “good-bye” or “see you soon” and start walking away
  6. sometimes people will miss these cues or will do the long Minnesota good-bye and keep talking and even follow you while still talking—at this point, make sure to keep walking, somewhat slowly, end eye contact with them, and don’t start any new topics. Eventually they’ll realize the conversation is over.

Other helpful resources for small talk skills are:

http://www.succeedsocially.com/endconversations

http://www.realsimple.com/work-life/work-life-etiquette/manners/10-big-rules-small-talk

http://www.ou.edu/class/bc2813/ConversationTips/MasteringSmallTalk.htm

a productive meeting

Social Skills Recovery in Schizophrenia

making connections

Often, when a person’s schizophrenia symptoms begin to emerge, one of the signs is social withdrawal and isolation. The person finds conversations more difficult to follow and his or her thinking can be constantly interrupted by symptoms such as paranoia and voices. However, there are several ways a person with schizophrenia can work on their social skills and improve their social life. Individual and group therapy, which can provide Cognitive Behavioral Therapy for Psychosis and social skills training and practice, can be of great help (see previous blog posts about Meeting New People and Small Talk).

In addition, club houses and Cognitive Enhancement Therapy are two other resources that, where available, can be a powerful tool to improve the quality of one’s social life.

Club houses (also called Community Support Program) are clubs for people with mental illness, where there are activities and opportunities to meet others. They offer a straightforward approach of offering a place and the structure to meet new people and do fun things. They’ve been around for decades, and improved the lives of many people.

Cognitive Enhancement Therapy (CET), on the other hand, is one of the newer treatments for people with schizophrenia disorders. Still in the research phases, it is available in many larger universities’ research programs, and has shown great promise with social skills improvement. Here is the link to one man’s experience with CET.

Small Talk 2: Keeping a Conversation Going

Three Friends Laughing

To learn more about Getting a conversation started, refer to the blog earlier this year, Small Talk 1: Getting Started and Knowing What to Talk About.

Once you’ve started a conversation, there are a few different skills to keep it going. First, use “signals” to show you’re interested and to see if they are interested in the conversation.

Verbal signals are things you say to let the other person know you’re listening and interested, and things they say to let you know they’re listening and interested. Here are some examples:

  • saying “Yeah” or “Mmm-hmm” or “Uh-huh” or “Okay”
  • saying “I didn’t know that,” “I hadn’t heard that,” “That makes sense,” or “I never thought of it that way”
  • stay on the same topic that they are one, ask follow-up questions about that topic
  • watch out for topics that will make the other person uncomfortable or confused—if they seem uncomfortable, try changing the subject
  • respond within a very short time, or if you need time to gather your thoughts, you can say “Let me think about that,” or “Well…” or “Hmmm”
  • don’t interrupt
  • if they seem uncomfortable for any reason, try switching to a new subject

Ask yourself, “Is the other person giving me verbal signals that shows they’re interested? If they’re not, should I go ahead an end the conversation? Or maybe change the subject?

Nonverbal signals are ways you use your body to show that you’re listening and interested, and ways they use their body to show they’re interested and listening.

  • eye contact: look at them in the eye–not constantly, just every few seconds (this can be an especially challenging skill for people with schizophrenia, try practicing it if it’s hard for you)
  • nodding briefly then they’re talking, not all the time, just here and there
  • raising your eyebrows while nodding can show interest
  • voice volume should be loud enough to be heard easily, but not shouting
  • lean forward a little
  • make sure your face expression matches the emotion of the conversation (if someone’s talking about something funny, smile, and if they’re talking about something sad, have a serious expression); this can be a challenge for some people with schizophrenia, practice this skill if needed
  • don’t stand closer than arm’s length, face the person or stand kind of to the side

Are you giving signals that you’re interested? Are they? If they aren’t, think about ending the conversation or changing the subject.

If the other person is giving signals that they’re interested, but you’re not sure what to talk about, refer to Small Talk Part 1 earlier in this blog to get ideas of topics to starting talking about. Once you’ve started on a topic, you can ask follow-up questions to keep the conversation going. For example, if the person mentioned they are going to a baseball game this weekend, you could ask one of these follow-up questions:

  • “What do you think of how the Twins are doing this season?”
  • “Do you go to baseball games often?”
  • “What other sports do you watch?”
  • “Do you play any sports yourself?”
  • “Have you ever been to a St. Paul Saints game? They’re super fun.”

Another example of follow up questions would be if the person just said that they are going out to dinner with family this weekend:

  • “Where are you going? Do you like that restaurant?”
  • “My favorite restaurant is Pepito’s in Minneapolis, what’s yours?”
  • What’s your favorite type of food? Why?”
  • “I’m not a chef, but I do like cooking. Do you? What do you cook?”
  • “Do you have any restaurant recommendations?”

If you run out of questions or things to say about a topic, you can begin a new topic (see Small Talk 1-Appropriate Topics for Anyone in an earlier blog). If they still don’t seem interested or you can’t think of anything else to say, it might be time to end the conversation: see Small Talk 3-Ending a Conversation for helpful techniques for doing so.

Getting Support

group session

One thing I hear over and over again from clients and their family members is how lost they feel during the early stages of the illness. They don’t know anyone who talks about schizophrenia, and it seems like such a rare and difficult illness. Sometimes just getting connected with other people with schizophrenia and their families is a big step forward.

Schizophrenia.com has several forums with quite a few conversations going on, both for families and for the people with the diagnosis.