NEWSLETTER NATIONAL ALLIANCE ON MENTAL ILLNESS OF MASSACHUSETTS, INC. z CAMBRIDGE-MIDDLESEX AFFILIATE WINTER 2019 www.nami-cambridgemiddlesex.org Save the date! EDUCATION l SUPPORT l ADVOCACY t t t t t t t t PROGRAMS COMING THIS SPRING MINDFULNESS & MEDITATION Ted Meissner Center for Mindfulness in Medicine, Health Care, and Society, University of Massachusetts Medical School Talk and 15-minute guided meditation + Q & A OPEN DIALOGUE Learn from the experts the power of this revolutionary of mental health care model. A consistent family and social network approach which always include the patient PEER PERSPECTIVES ON EMPLOYMENT & SUPPORTS Join us for a panel discussion on employment resources and lived experience navigating the workplace with a mental health condition. SPEAKING OF SCIENCE 2019 Digging Deep on the Impact of Marijuana Anne Eden Evins, MD Massachusetts General Hospital Dr. Evins’ research interests, currently supported by major grants from the National Institutes of Drug Abuse, include pharmacotherapy for nicotine dependence, negative symptoms of schizophrenia, co-occurring psychiatric and substance use disorders and cognitive dysfunction in schizophrenia. EDUCATION PROGRAM Family Support Groups Welcome to the free and confidential Family Support Groups of NAMI-Cambridge/Middlesex. No sign-up necessary. FOR CAREGIVING FAMILY MEMBERS AND FRIENDS OF PEOPLE WITH MENTAL ILLNESS. 1ST AND 3RD MONDAYS YEAR-ROUND, 7:30-9:00 PM CHA LEARNING CENTER, CAMBRIDGE HOSPITAL, 3RD FLOOR 1493 CAMBRIDGE ST., CAMBRIDGE, MA For information, email [email protected]or visit nami-cambridgemiddlesex.org. Things to Know… You don’t need to explain anything. We already understand. Mental illness is treatable. It’s not anyone’s fault. Together we can give each other strong support. We welcome back Cori Cather, PhD, master of communication, Director of Psychology Services for Schizophrenia Clinical and Research Program, Massachusetts General Hospital Schizophrenia Program, Director, Center of Excellence in Psychosocial and Systemic Research, MGH Let’s Be Clear Communicating More Effectively with People who have Mental Illness WEDNESDAY, JANUARY 9, 2019, 7-8:30 PM Macht Auditorium Cambridge Hospital, 1493 Cambridge St., Cambridge (Vouchers available for garage parking)
Transcript
newsletternational alliance on mental illness of massachusetts, inc. z cambridge-middlesex affiliate
winter 2019
www.nami-cambridgemiddlesex.org
Save the date!
e d u c at i o n l s u p p o r t l a dvo c ac y
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Programs ComINg THIs sPrINg
Mindfulness & MeditationTed Meissner Center for Mindfulness in Medicine, Health Care, and Society, University of Massachusetts Medical SchoolTalk and 15-minute guided meditation + Q & A
open dialogue Learn from the experts the power of this revolutionary of mental health care model. A consistent family and social network approach which always include the patient
peer perspectives on eMployMent & supportsJoin us for a panel discussion on employment resources and lived experience navigating the workplace with a mental health condition.
speaking of science 2019 digging deep on the impact of MarijuanaAnne Eden Evins, MD Massachusetts General Hospital
Dr. Evins’ research interests, currently supported by major grants from the National Institutes of Drug Abuse, include pharmacotherapy for nicotine dependence, negative symptoms of schizophrenia, co-occurring psychiatric and substance use disorders and cognitive dysfunction in schizophrenia.
education prograM
Family Support Groups
Welcome to the free and confidential family support groups of
nami-cambridge/middlesex. no sign-up necessary.
for caregiving family members and friends of
people with mental illness.
1st and 3rd mondays year-round, 7:30-9:00 pm
cHa Learning center, cambridge HospitaL, 3rd FLoor
1493 cambridge st., cambridge, ma For information, email [email protected]
or visit nami-cambridgemiddlesex.org.
Things to Know…you don’t need to explain anything.
we already understand.
mental illness is treatable.
it’s not anyone’s fault.
together we can give each other strong support.
We welcome back Cori Cather, PhD, master of communication, Director of Psychology Services for Schizophrenia Clinical and Research Program, Massachusetts General Hospital Schizophrenia Program, Director, Center of Excellence in Psychosocial and Systemic Research, MGH
let’s Be clear
Communicating more Effectively with People who have mental Illness
this newsletter is published quarterly by the national alliance on mental illness–cambridge-middlesex affiliate for its members and others interested in our education, support, and advocacy work on behalf of the mentally ill. you can find back issues at www.nami-cambridgemiddlesex.org.
nAMI-CM newsr e s o u r C e s
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OctOber 10, 2018 When it comes to medications, the deciding factor is often “cost” vs. “benefit.” In the case of Clozapine, a medication of choice for many with schizophrenia, a factor is the monthly blood draw required to check the white blood cell count. A pharmacist cannot dispense it otherwise. But, the benefits of Clozapine are such that attendees of the MGH Family Day lectures on schizophrenia will remember hearing Dr. Olivier Freudenreich say that, if it were permitted…which it is not… the first medication he would prescribe to a patient with schizophrenia is Clozapine. Unlike other countries, for cost and safety reasons, US protocol dictates that a person must fail on several anti-psychotics before being prescribed Clozapine.
Why is clozapine so efficacious and is it worth the trouble and the potential risk? For our October 2018 Program, we heard from Drs. Ann and robert Laitman, internists, and their son Daniel about their positive experience with clozapine.
The Laitman family was joined by psychiatrist Dr. J. Alexander bodkin and moderator, Dr. Deborah Levy, both of McLean Hospital, to share their knowledge about clozapine and to hear Daniel tell his story.
Dr. Levy explained that the first challenge is to get a good diagnosis and then get an effective treatment plan. There is, as yet, no test for mental illnesses. Dr. bodkin presented the history of clozapine: first introduced more than 50 years ago as an anti-depressant, it was initially of interest because of its similar chemical structure to other effective drugs. It has a complex mode of action and some difficult side effects, including toxicity to white blood cells that can lead to agranulocytosis: an acute condition involving a lowered white blood cell (Wbc) count and thus susceptibility to infection. It can be prevented by stopping clozapine in time. Since there is a small risk of death, regular blood tests are mandated…a major inconvenience or “cost”.
However, Dr. bodkin explained that it was the “wonder drug,” more effective for patients than all previously known neuroleptic drugs for schizophrenia. Unlike other drugs, it did not cause tardive Dyskinesia (tD). The symptoms of tD — jerky, involuntary movements — can become permanent.
It was thought that clozapine might be ineffective because it lacked the “standard” side effects of the other schizophrenia drugs. However, many patients found relief with clozapine that they had not found with other drugs.
Dr. Ann Laitman explained that her son, Daniel, had symptoms of hearing voices but he did not tell anyone about them at first. Yet, he had some strange behaviors and said he was “terrified of losing his soul”. Getting a clear diagnosis was a long process for Daniel. Four anti-psychotics in combination with other drugs failed. A fortuitous phone call from Ann’s parents led them to a psychiatrist and a researcher in boston who both suggested clozapine. This started Daniel’s “true road to recovery.”
Daniel described his experience during his onset and progression of illness. He said that some aspects of schizophrenia are good. His perspective was invaluable. He appears to be a good model for others in
that he has found his niche as a comedian (he doesn’t hear voices when performing his stand-up comedy routine)
and is able to live independently with the loving support of his family and by staying on clozapine and carefully managing its side effects.
Dr. robert Laitman described his approach to psychiatry as “bio-psychosocial” and “rational polypharmacy.” He recommends using Xavier
Amador’s “LeAP” approach: Listen, empathize, Agree, Partner with the patient, as much as possible.
He also emphasized exercise and diet as essential parts of treatment – running, walking, swimming regularly. “by now we have learned a lot of facts about schizophrenia, its progression and the mechanisms taking place in the brain,” he explained. “Pruning” of neurotransmitters is a normal process of maturation, but schizophrenia causes this natural pruning to go too far, damaging normal brain function. early treatment is essential. “Get as clear a diagnosis as possible and begin treatment early,” he emphasized. Adherence to the medications and other recommended routines are important thereafter.
“begin with lower doses and raise slowly to get to therapeutic levels,” he advised. “Doctor visits should be scheduled weekly at first. Due to sleepiness induced by clozapine, shift to bedtime dosing.” When side effects are seen, take action, he advised. There are a number of drugs that can treat the side effects, and Laitman recommends aggressive treatment of these side effects, to maintain adherence to clozapine, and for the quality of life that everyone deserves.
For further reading: The Laitmans have written a self-published book on their experience. Meaningful Recovery from Schizophrenia and Serious Mental Illness with Clozapine, 4th edition (Fall 2018) can be purchased here: https://www.teamdanielrunningforrecovery.org/ or from amazon.com
Join NAMI Cambridge-Middlesex:Please print clearly and mail to the address below with your check or visit www.nami.org to join online
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cambridge family support groups (fsg)Free and confidential drop-in support groups are open to caregiving family and friends of people with mental illness every first and third Monday, 7:30-9:00 pm, at cambridge Hospital, 1493 cambridge St., cambridge.For information, email [email protected] or visit nami-cambridgemiddlesex.org.
area support groupsacton Susan McDougall, [email protected] or 978-263-8830bedford 781-982-3318.dorchester Monica 857-342-2796 or [email protected] trish Woods 978-897-2962Wakefield 781-438-1851 or 978-658-3567 or email: [email protected] for the soul cambridge Info: [email protected].
free peer-to-peer classes cambridge Hospital contact [email protected] for schedule and registration.
naMi connections Support group for peers/consumers Wednesdays and Fridays 10:30-Noon cambridge/Somerville rLc, 35 Medford St., Ste. 111, First Floor, Somerville contact Janel at 617-863-5388 or [email protected]
naMi cambridge-Middlesex. . . . . . . . 617-984-0527Recorded information about education meetings, family support groups, and membership. You can leave a message.
naMi Mass coMpass for help navigating the mental health system in Massachusetts: 9 am-5 pm, Mon-Fri. . . . . . . . . . . 617-704-naMi (6264)
naMi Mass office (9am-5pm, M-F). . . 617-580-8541 The Schrafft’s Center, 529 Main St., Ste. 1M17 Boston, MA 02129
psychiatric emergenciesCall 911 for immediate medical help.cHa cambridge Hospital . . . . . . . . . . . 617-665-1560 The Psychiatric Emergency Service (PES) of the Cambridge Health Alliance (CHA) is located in the Emergency Department at Cambridge Hospital, 1493 Cambridge St., Cambridge. Psy-chiatrists and clinical social workers are on duty 24 hours a day.
Best team (Boston emergency service team) 800-981-4357 Primary emergency service team that serves Boston, Cambridge, and Somerville. In-person behavioral health crisis assessment, in-tervention, and stabilization service in the community or at their two centers, 24 hours a day for individuals of all ages covered by MassHealth (Medicaid) plans, Medicare, and the uninsured.
emergency psychiatric services for other communities . . . . . . . . . . 877-382-1609
suicide prevention samaritans of Massachusetts24-hr. emotional distress line 1-800-273-talk 24 hour crisis intervention/hotline 1-877-870-Hope Teen Line (statewide) 1-800-252-8336 24 hour Helpline 1-617-247-0220
suBstance aBuse Help
Mass substance abuse Helpline 1-800-327-5050 Free, confidential information and referralscambridge support group for Family and Friends Mondays, 7-8:30 pm, Spaulding Hospital. Free parking.
NAMI National Legal Center (namimass.org under “Resources” includes “Road Map through the Massa-chusetts Criminal Justice System for Persons with Mental Illness and Their Family.”
Your membership helps strengthen the voice of NAMI, nationally and locally, for the millions of Americans living with serious mental illness. Please join today. NAMI-Cambridge/Middlesex offers free support groups and education programs for family members and friends of the mentally ill.
clozapine’s risks and rewardsOne Family’s Story
The best thing about the future……is that it comes one day at a time.
Find Your Legislator http://www.wheredoivotema.com/bal/ MyElectionInfo.aspx
senate
sal n. didomenico DISTRICT: Middlesex and Suffolk State House Room 208 Boston, MA 02133 Phone: 617-722-1650 Fax: 617-722-1323 Email: [email protected]
patricia d. Jehlen DISTRICT: Second Middlesex State House Room 424 Boston, MA 02133 Phone: 617-722-1578 Fax: 617-722-1117 Email: [email protected]
Joseph boncore DISTRICT: First Suffolk and Middlesex State House Room 109D Boston, MA 02133 Phone: 617-722-1634 Email: [email protected]
house
david M. rogers DISTRICT: 24th Middlesex State House Room 472 Boston, MA 02133 Phone: 617-722-2013 Fax: 617-626-0275 Email: [email protected]
Marjorie c. decker DISTRICT: 25th Middlesex State House Room 155 Boston, MA 02133 Phone: 617-722-2692 Fax: 617-626-0337 Email: [email protected]
Jonathan hecht DISTRICT: 29th Middlesex State House Room 22 Boston, MA 02133 Phone: 617-722-2140 Fax: 617-626-0199 Email: [email protected]
Mike connolly DISTRICT: 26th Middlesex State House Room 437 Boston, MA 02133 Phone: 617-722-2425 Email: [email protected]
Jay livingstone DISTRICT: 8th Suffolk State House Room 136 Boston, MA 02133 Phone: 617-722-2396 Email: [email protected]
sean garballeyArlingtonState House Room 540 Boston, MA 02133Phone: 617-722-2090 Fax: 617-722-2848Email: [email protected]
Jay r. kaufmanLexingtonState House Room 34 Boston, MA 02133Phone: 617-722-2320 Fax: 617-722-2415Email: [email protected]
secretary of the commonwealthelections division, Mccormack Buildingone ashburton place, room 1705Boston, Ma 02108toll-free: 1-800-462-vote (8683)617-727-2828 fax: 617-742-3238email: [email protected]
call 1-800-462-8683 or 617-727-2828 or email [email protected], if your town or legislators are not listed here.
nAMI CAMbrIdge / MIddlesex news
cambridge-cm Honored at namimass convention
Carolyn White (left) and Sharon de Vos received an “Unsung Hero” award at the NAMI Mass State convention for their continued work teaching Family to Family. The team of White-DeVos have not only been teaching F2F for nearly a decade, helping more than 200 participants better understand mental illness, but they have also trained 25 new teachers.
Walk Captain John Sharp also picked up the prize for the top performing Walk team. Under John’s outstanding leadership, the NAMI-cM team recruited 92 walkers and raised $56,000. Walkers joined us from all over the state, including a healthy contingent from cambridge Health Alliance.
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DeceMber 4, 2018 Like many family members in his NAMI audience on December 4, Pete earley threw everything he had into helping his son Kevin recover from mental illness—his skill as an investigative journalist, his contacts in Washington, D.c., and, above all, his immense love for his son. Six years later he shared the story of his son’s recovery and what he has learned: “trust your heart. Accept the new normal and understand your limits, but always have hope. Get angry and fight for those you love. And get involved in NAMI!”
Pete gave an overview of what happened to his son and how a less-than-perfect mental health system responded to their family’s needs. “I know what it’s like to have my son become a complete stranger,” he said.
“relatives tell you to just let him ‘hit rock bottom’. Psychiatrists tell you that your son has an incurable disease and will never get better or that they can’t do anything for him because ‘he’s not a danger to himself or others.’ “call us when he threatens to kill you,” they said several times.
After three arrests, five hospitalizations, abhorrent medication side effects, and scores of mediocre treatment professionals, Kevin encountered a caseworker who helped him take charge of his illness for the first time. “Let’s find a better medicine,” she said. Next came housing and a job. He became a Peer-to-Peer specialist and is now working full time and going to graduate school. “I am so lucky,” Pete said. “Kevin has overcome tremendous odds.”
Movingly, Pete also showed a video of Kevin and some other family members describing their experience of recovery. Kevin is an advocate himself now, and even publicly told his story in a rap for the national mental health storytelling organization, This Is My brave. Hearing Kevin’s own words gave a whole other dimension to the story.
Pete shared several other “need to know” resources for families and advocates to learn about in their states:
pete earley: a Father’s Journey with His son to recovery
basketball, soccer, Frisbee, and bocce balls were flying at a park in east cambridge this fall, thanks to NAMI-cM’s funding of Vinfen’s “Afternoon in the Park” program. This modestly-funded activity, staffed by the cambridge Somerville recovery Learning center (rLc) took a small group of members to this weekly activity to get exercise, fresh air, relaxation, and some social time. It even led to the purchase of digital cameras, photographs in the park, and lots of sharing. Inclement weather led to indoor badminton, Wii sports, and dance and movement programs. The rLc also used the NAMI-cM funds to purchase books that address social skill building which are promoting group discussions and sharing.
vinfen puts social inclusion Funding to work
auction winnings
Mary cassesso, head of the cam-bridge Health alliance foundation, nabbed these beautiful hand-blown glass bowls.
susan flannery, a member of the board of riverside community services, reviews the offerings where she found and won the trip to paris in the live auction.
Hostess vidhu nambiar (right) shows Megan Wiechnik how to make a delicious dosa at the “dosas and Mimosas” party, one of many unique offerings in naMi-cM’s fall auction.
n Assertive community treatment (Act): in MA usually called PAct and some Department of Mental Health (DMH) adult services under the AccS umbrella fit this model. https://www.mass.gov/service-details/dmh-adult-services-overview
n Housing First programs place homeless individuals in housing first and then provide services. With few “housing first” programs in MA, most that serve the mental health population find participants through DMH homeless outreach programs. http://www.bphc.org/whatwedo/homelessness/homeless-services/Pages/Housing-First-Initiative.aspx
n clubhouses, like Fountain House in New York city: the MA clubhouse coalition website describes the clubhouse model of supported employment and lists MA club-houses https://www.massclubs.org/
A staunch advocate for justice reform, Pete also mentioned Stepping Up, a national initiative to reduce the number of people with mental illnesses in jails. https://stepuptogether.org/
Pete earley is one of 14 non-federal members of the Interdepartmental Serious Mental Ill-ness coordinating committee (ISMIcc), an advisory group of the Substance Abuse and Mental Health Services Administration (SAMHSA). read their recommendations, which are included in the group’s report to congress in December 2017. https://www.samhsa.gov/ismiccLearn more about Pete earley’s work, follow his blog, join his mailing list, etc. on his website: http://www.peteearley.com/
naMi-caMBridge/MiddleseX174 appleton streetcambridge, Ma 02138
inside this issue:save the date ............................. p.1resources .................................. p. 2clozapine’s risk and rewards .... p.3naMi-cambridge/Middlesex news ...p. 4
Communicating More Effectively with People who have Mental IllnessLet’s Be Clear
Does your son refuse to get up in the morning?
Does your sister insist she doesn’t need to take her medications?
Has your husband gained 40 pounds and refuses to exercise?
Is your daughter engaging in dangerous behaviors and refusing help?
Join us and learn from expert communicator Cori Cather, director of the Center of Excellence in Psychosocial and Systemic Research at MGH, effective strategies
for communicating with your loved ones living with mental illness.
Communicating More Effectively with People who have Mental IllnessLet’s Be Clear
Does your son refuse to get up in the morning?
Does your sister insist she doesn’t need to take her medications?
Has your husband gained 40 pounds and refuses to exercise?
Is your daughter engaging in dangerous behaviors and refusing help?
Join us and learn from expert communicator Cori Cather, director of the Center of Excellence in Psychosocial and Systemic Research at MGH, effective strategies
for communicating with your loved ones living with mental illness.
Communicating More Effectively with People who have Mental IllnessLet’s Be Clear
Does your son refuse to get up in the morning?
Does your sister insist she doesn’t need to take her medications?
Has your husband gained 40 pounds and refuses to exercise?
Is your daughter engaging in dangerous behaviors and refusing help?
Join us and learn from expert communicator Cori Cather, director of the Center of Excellence in Psychosocial and Systemic Research at MGH, effective strategies
for communicating with your loved ones living with mental illness.
