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NAMI Speaker Meeting 2/27/14

Note:  I wrote this article for an organization called NAMI (National Alliance on Mental Illness).  

CET Bridgehaven

CET brain squish-ball

CET brain squish-ball

On yet another bitterly cold night during one of the worst winters in U.S. history, those perhaps stressed by the requisite cabin fever were treated not only to their own brain-shaped squish-ball, but also to some very exciting news in the world of mental health treatment.  On Thursday, February 27, 2014, Chicago and suburban-Chicago NAMI members and supporters attending NAMI Barrington’s monthly speaker meeting welcomed Ray Gonzalez, ACSW, LISW-S, to a packed house at Oakton Community College in Des Plaines, IL.  At this meeting, Gonzalez shared extensive information about a compelling advancement in the treatment of schizophrenia that is currently being practiced in 29 other cities around the country.

Gonzalez serves as Executive Director of the Center for Cognition and Recovery in Cleveland, Ohio, and hopes to bring this successful treatment program to the Chicago area.  The topic of his discussion and of the technique, “Cognitive Enhancement Therapy:  Physical Therapy for the Brain” ignited strong support from the 150 attendees, who expressed unanimous interest in seeing the program established locally.

Although Cognitive Enhancement Therapy (CET) is a non-medication treatment geared primarily toward remediation of the underlying disabilities of schizophrenia, it is also a promising approach in the treatment of other cognitive disorders.

Like Cognitive Behavioral Therapy,  Cognitive Enhancement Therapy works to remediate the brain, and is a form of cognitive remediation that supplements standard drug therapies.  Since patients are initially reluctant to accept their diagnoses and further frustrated by the side effects they experience from their medications, Gonzalez opened his explanation of CET with the popular industry quip that “the best medication is the one the patient takes.”  Nevertheless and to complete his point, Gonzalez quoted the words of Dr. William McFarlane, M.D., who specified that it also “takes more than a pill to really recover” from mental illness.  CET is meant to fill in the gaps left by traditional treatments alone, namely medication and talk therapy.

CET works on the premise that people can and do recover if they have the proper and necessary treatment.  According to Gonzalez, CET is a year-long one-time intervention that focuses on improving social cognition and quality of life.  It is “an active treatment, a very hopeful intervention” that mitigates the social isolation that is part and parcel of experiencing schizophrenia and other psychiatric illnesses.  Perhaps above all, CET focuses on how to keep people who are struggling to recover from schizophrenia and bipolar disorder from being lifelong or institutionalized mental health patients. CET participants enjoy both measurable and immeasurable improvement, with graduation and attendance rates of 85%.

Because overcoming stigma and social isolation are secondary but important hallmarks of persistent and severe mental illnesses and disabilities, CET works largely on the premise that the best mental exercise is social interaction.  CET accomplishes this task primarily with weekly social cognition groups, as well as computer exercises similar to popular interactive computer programs that focus on brain exercises; yet, adds to that activity the crucial supportive component of active weekly coaching and feedback by trained CET therapists.

In the social cognition group sessions, participants work together on teams with their assigned partner to solve interesting and engaging cognitive tasks.  This un-intimidating and manageable pairing into groups of two aids in achieving a higher sophistication of socialization than the participants typically enjoy.  In many cases, an assigned CET partner represents the first real friend the patient has had in many years, or possibly ever.  It has been proven that such groupings also begin to awaken each participant’s capacity for bonding, intimacy and empathy–all higher level states of cognition and behavior that otherwise generally escape these individuals.

The goal of such an active, evidence-based practice is to gradually integrate the individual back into society, hopefully to function on a level high enough to maintain employment.

It is thought that CET may increase gray matter through the increase in the number of new synaptic connections.  CET not only improves socialization, but also works on other modalities that increase self-esteem and self-confidence.  Areas of improvement include awareness of one’s physical health and hygiene, cognitive processing speed, motivation/ initiative and energy, attention, concentration, memory, problem solving, abstract thinking, role flexibility, sense of joy, sense of humor and spontaneity, to name a few.

Success in CET has proven to be long-range, not just short-term.  Some individuals tested were able to maintain functionality as much as twelve years post-CET.  Many participants had not only obtained but also maintained employment, and relationships had radically improved to the point that some had even married.  CET is currently available in specified areas, but one of the primary purposes of Gonzalez’s visit was to elicit interest in expansion, specifically to the Chicago area and throughout the state of Illinois.

In recognition of their dissemination of CET, the Center for Cognition and Recovery received the 2011 SAMHSA Science and Service Award.  SAMHSA also recently awarded a Primary Care & Behavioral Health Care Integration Grant to Didi Hirsch, a large CMHC in Los Angles. The grant included funding for them to use CET in their Health Home Initiative. CET is being used to improve their clients’ processing speed, working memory and executive functioning so that they can better communicate with their primary health care providers.

CET is currently available in specified locations to qualifying individuals living with  schizophrenia and schizoaffective disorder, as well as other related mental disorders.  Participants must be 18 years of age or older and medication compliant.  Currently, participants must also be fluent in English, and able to read at a fourth-grade level.  The program takes 48 weeks (3 ½ hours per session), and participants continue to develop over time.  The CET group is no fewer than 8 and no more than 12 participants, both male and female.  CET is strongly recovery-oriented, and in current locations is covered by Medicare, and by Medicaid in 10 states.  Many attendees at the meeting stayed to the very end of the question-and-answer session.   NAMI hopes to help expose more providers to CET, and to bring CET to the area as soon as possible.1-22-14 CET Map

To learn more about CET, go to www.cetcleveland.org.  Or, to help assist in bringing this exciting and much anticipated treatment to Illinois, contact Hugh Brady at bradyhugh@aol.com, or Ray Gonzalez at rgonzalez@cetcleveland.org.

The next NAMI speaker will be Dr. Nausheen Din on March 18.  Dr. Din is a Barrington psychiatrist whose presentation will feature ways to facilitate success for college-aged student sufferers of depression, anxiety, substance abuse, and other psychological concerns.  The meeting takes place in Barrington Village Hall from 7-9 p.m.  There is no charge for this event, and all are welcome to attend.

 

 

@ Debra A. Valentino, all rights reserved.

 

 

 

Identification and Survival — How Scrapbooking Saved My Brain

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Part 1.

I’ve been watching CBS’ 60 Minutes most of my life, but I missed last night’s interview with Liam Neeson, because I was busy cooking for my family.  The minute I learned that Neeson was the guest, however, I actually felt relieved that I missed the show…then immediately began to breathe rapidly, feel slightly anxious, unwillingly revisiting the panic I felt when his wife, Natasha Richardson, died five years ago from Traumatic Brain Injury.

At the time of Natasha Richardson’s death, I was unable to cook.  I could no longer follow a recipe, because of my own Traumatic Brain Injury.  I had trouble reading and I had trouble following things in a sequence.  I couldn’t process most information, certainly not automatically or without delay.  I also could not cook extemporaneously, as I was accustomed to doing, or even stand for extended periods of time.  I had actually given up trying to cook or really even wanting to.  At that time, there were many things I no longer could do, and I had given up even caring; because in many ways, I was still fighting for survival.

In March 2009, I identified strongly with Natasha Richardson’s story.  Richardson was a mother and 45-years-old when she received blunt force trauma to the head, and I was snow sports printer's traymother and 50-years-old when I received the same.  Like me, Richardson reported being “fine” shortly after her injury.  Like me, she also refused medical care initially, and then tried to resume her normal activities.  Like me, the full impact of her injury took time to surface; and as in my case, the subsequent swelling in her neck and head, as well as the bleeding in her skull and brain, all impaired her communication skills.  For each of us, this event changed everything.  How I survived and she did not is still a mystery to me to this day.

At times I wonder if not going to the hospital is actually what might have saved me…though I would never advise this to anyone.  In fact, I feel the opposite:  Do not hesitate for any reason; always go immediately to the hospital.  Do not wait, as I did, until a doctor insists.  Not that you’ll be thinking…you’ll more likely be groggy and uncomfortable, perhaps even combative and crying, yelling and screaming as I was (which graduation bannerare all classic symptoms of closed head injury).  So I might amend this to say that if you are the person accompanying a person who suffers a blow to the head, insist on calling an ambulance. Don’t argue with them about it, just do it. The injured person very well may need to receive oxygen, at the very least; but they probably won’t know it, and will most likely thank you in the end.  Just be safe, and call for emergency help.

Natasha Richardson’s family is now left to tell her story, but because I somehow miraculously survived, I am finally trying to tell my own.

spring bouquetkids' birthday cardFive years after Natasha Richardson’s death and nearly seven after my own ordeal, I am back at last to cooking again.  Yet I am still uneasy when I recall her story.  I am still squeamish about watching a television interview about it.  I don’t really like to relive the feelings I felt and the thoughts I thought when I was working hard to recover from my own Traumatic Brain Injury.  It is a bit of a burden to carry, knowing how close one came to death.  And having survived is not always filled with rejoicing. There has been a lot of suffering and chronic pain, endless medical care, and far too much negative change–all of which was completely against my will.

Still, what is also interesting (and what ultimately matters most to those who live) is what a person does, not only to survive a life-threatening condition, but also to endure it.

Part 2:

Inspire cardWhen occupational therapy failed me one summer, one of the tasks I discovered on my own that was exceedingly helpful was scrapbooking.  It was something I could do that was analogous to the kinds of tasks I enjoyed in my job as a professor of English. It allowed me infinite opportunity for invention and hours of creativity, which I had regularly practiced in my reading, lecture planning, assignment making, and discussion leading.  It necessitated a vast variety of materials, new skills and tools, all of which provided a new vocabulary, and consequently a new perspective, which was also at times mathematical.

IMG_1231In addition, scrapbooking stimulated my weakened memory as I sorted through old photographs, at times of events of which I now had no recollection (which was completely unlike my old brain that was detail-oriented, effortlessly remembering dates, as well as what everyone wore and said).  Scrapbooking also provided endless trials of where I put whatever I was using or needing to use.  In fact, I often spent more time looking for things I just had in my sewing cardhands or retrieving things I was certain I put in a particular place, than I did actually crafting.  This was useful, however, because my injury left me deficient in visual recall, and I needed at the time to work on this skill probably above all others.

IMG_3273For me there was a natural progression from scrapbooking to paper crafting, where instead of celebrating and documenting experiences, I created gifts for others and for occasions that celebrated and honored them.  The flexibility of paper crafting was especially gratifying to me as I worked on tags, cards, author's printer's trayprinters’ trays, banners, books, and more.  Really, there is no end to the things one can create with both mediums, but to a writer/technical writer, there really isn’t anything more fun than working with a lavish array of colorful pens, papers, and possibilities.  It’s all in its own way very poetic, and not at all devoid of linguistic competence.

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Because teaching college English did not permit excess time forwall hanging exploring hobbies beyond writing, the opportunity for me to dabble in this new endeavor became a valuable experience at a time when nearly everything else that mattered to me was uncertain, or at the least had to be put on hold.

friendship cardNot only did I learn a good deal by paper crafting, which also helped me to rebuild cognitively while developing new neural pathways, but crafting also helped me to heal further in other valuable ways, including spiritual and emotional.  It was something I could complete when I generally felt worthless or otherwise non-productive.  It was something I could enjoy in a quiet, focused environment, when other sensory 14 ways to share your heart with the world bouquetinformation often felt crowding or even overwhelming.  It was something, during short reprieves of chronic pain, that I could do that left me close to my bed for rest graduation cardwhenever I was overcome by fatigue.  And crafting gave me something to plan and to dream about, as well as anticipate.  Above all, I enjoyed the prayful experience of holding in focus the person and the relationship I had with the person for the duration of time it took to craft something for them.  In this way, crafting was a calming meditation of positive thought and influence, something that inherently brought me great joy.  It never mattered to me that it was joy typically greater in proportion than that of the recipient’s.

Scrapbooking, unlike poetry, generally has the appearance of being easy to accomplish,Mother's Day card when in fact, it can be quite tedious and time consuming, while also requiring tremendous patience.  Poetry, if it is good, often looks more complicated than it is—more arduous to write than it actually was.  This is not to say that writing poetry is easy.  It is just that the two arts are not generally seen in the same light, when my experience shows that they might be.  In an upcoming post, I will explore the experience of writing poetry during recovery from head trauma.

 

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© Debra A. Valentino, all rights reserved.

The Olympian Task of Cognitive Rehabilitation in ATBI

olympic skiierThere’s nothing glamorous about having a head injury.  Likewise, there’s nothing glamorous about having had a head injury; or for that matter, about writing about head injury.  Because of its mysteries and its stereotypes, head injury doesn’t elicit the kind of compassion or sympathy that cancer or other illnesses engender.  Nor does it enjoy the popularity or accolades of, say, being an accomplished musician or developing a new invention.  People don’t like to read about head injury, let alone talk or think about it, primarily because head injury is negative and uncertain, and in its way, intimidating.  In general, people don’t like to think about unpleasant things that seemingly don’t affect them.

At best, closed head injury is typically reduced to ignorance and unknowing, an intangible illness that most like to make sophomoric jokes about.  No one much understands what really goes on with closed head injury, and because it affects cognition, people like to reduce it to a type of insanity or reduced I.Q., of which it is neither.  This misconception isn’t always the fault of ignorance.  It’s easy to misjudge what one does not understand.  Even doctors disagree on the prognosis of the head injured; so, there is unfortunately enough confusion and debate to confound just about everyone concerned.  Yet most people are not concerned about head injury, unless and until this sort of tragedy befalls them, as it did me the year I turned 50.

When you are the unfortunate person experiencing the effects of closed head injury, you are given no choice but to endure it…and it is an unimaginable anguish that one can only hope to convey, if one is as lucky as I was even to survive it.  Indeed, we hear all the time about those who die from blunt force trauma to the head. When I was suffering the early effects of my injury, I never envisioned another day of writing, or especially a new day of blogging.  It took all my energy just to breathe and survive the physical pain.  And that went on for years.  In many ways I feel I now must write this blog, solely because I can.

However much energy recovery takes, recovery from head injury is not seen by most as being anything as magnificent as the focused endeavor of, say, playing a concerto piano piece, publishing a book, or of gliding through snow and air like an Olympic skier. Accomplishing recovery from head injury is generally not even rated up there with the less grandiose task of washing and waxing one’s automobile.  In fact, full or even mostly complete remediation from head injury is not even always believed, even when we witness it. Despite all the bias that exists against head injury, and in its own metaphoric way, healing from acquired traumatic brain injury (ATBI) is all these things and more.

Recovery from acquired traumatic brain injury does not lack focus.  The person has to work and fight hard.  In some ways, the battle is equally arduous as that of the olympic trainer.  While there is no piano or ski slope or car to wax, the head-injured person competes against the dying brain, the brain that controls every thought and every movement…the brain that is torn up and subsequently moving toward shutting down.  In this way, both the person’s will to endure and the brain’s ability to rewire are as phenomenal and as Olympian as the longest tenacity and the finest precision we can envision.  We can and must be grateful that this is the case, while not underestimating the seriousness, as we know many who are not as fortunate, through no fault of their own.

So, how does a person begin the business of cognitive rehabilitation after acquired brain injury?  First of all, as discussed in an earlier post, one has to realize that doctors and healthcare alone cannot complete the job of cognitive rehabilitation.  Nor does the organ, the brain, solely repair itself.  The patient herself must participate, and indeed initiate some of her own measures.  And when she or he is unable to do so, someone who cares needs to be willing to step in.  There are always important and valuable rehabilitative measures available to both the injured and to the caretaker(s) who may need to advocate on the patient’s behalf.  In order to reach maximum rehabilitation, one must not hesitate to avail oneself of these.

I am fortunate that somehow in my cognitive demise, I was myself aware of this need.  Even when I was in too much pain to lift my head (or body, which felt equally broken), I somehow knew that I must work my brain.  Something compelled me to listen to music, which I could hardly put on for myself.  Something told me that even though I was off work on medical leave and unable to read without crushing fatigue, I could still write a poem.  Something drew me to online community that kept me connected socially when, due to the debilitating physical affects and compromised speech and communication skills, I rarely left my home–or actually, my bed.

In the next few posts, I would like to share some of the activities I sought that ultimately turned the darkest years of my life into some of the brightest and most nourishing.sparkle

@ Debra A. Valentino, all rights reserved.

The Brain is a Heart

It’s February, and there’s lots of moaning and groaning going on about this worst winter for many (“worst” as in snow and more snow).  Also with winter comes the ensuing cabin fever, and sometimes, the downright blues.  And who could avoid them after a day like this past Sunday, when we woke to devastating news of the heroin overdose of acclaimed actor Philip Seymour Hoffman, then suffered one of the worst football contests in Super Bowl history (Seattle Seahawks 43 over Denver Broncos 8).  How to process such a shocking loss of a remarkably talented man; although, with a blowout like that, at least for once we didn’t have to witness the further proliferation of NFL concussions.

There’s also on the horizon all the griping about Valentine’s Day by those who are jaded or have otherwise not been lucky in love.  Some people just hate Hallmark holidays, but this is America, damn it.  Pointlessly probably, I want to say, “It’s February!  The season of hearts and flowers, and (squeal) love poems.

I may want to tell you my whole life history of all the fun and romantic things I’ve done to celebrate love, which began in my childhood home as we joyously exclaimed, “Happy Valentino’s Day!”  …Of all the fun things I’ve got going on now in preparation.  That would be fun to write about, but in light of all we are facing, and instead of all the boycotting that might go on, I need to write about what matters more to me these days (or at least as much).

I say, why not love something we all truly should celebrate:  OUR BRAINS!   Yes, yes.  I hereby declare February “Love Your Brain” month.

Your heart is the seat of your soul, and it is an incredible organ worthy of much attention, but your brain, your brain…I’m telling you, people, it really is all about your brain!

Your brain is the most amazing organ in your body.  It literally controls the functioning of all your other organs—including the breaths you take.  You would be amazed at what becomes affected when your brain stops working optimally…a whole host of matters from muscle atrophy to slurred speech to severe fatigue.  And you would also be amazed at how the brain works to heal itself and all it can accomplish.  Both lists are greater than you can imagine.  But we can’t count on our brain’s incredible ability to rewire itself.  We have to pay attention to what goes on, because even if we are never impaired, one of our loved ones certainly might be.

Your brain is also responsible for some 70,000 thoughts a day.  Like most things, we don’t appreciate what we have going for us neurologically.  We waste time worrying about our body size and bankbooks, when what we really should be doing is treating our brain better and celebrating the phenomenal entity that is our brain.  Every action, every thought, every movement:  Your brain, your brain, your glorious brain.

Case in point, addiction is a disease, and when the diseased brain takes over, people make poor choices that can cost them their lives, as is the case with so many young people and too many Hollywood movie stars.  Acquired brain injury is not the same thing at all, but some of its effects are often confused by those who are uninformed or have been fortunate enough not to have experienced them.  I say fortunate enough not to have experienced, because really, brain injury can occur at any moment in a multitude of situations.  No one wants to suffer a brain injury; yet truly, anyone who is alive is at risk.  So, as long as you are healthy, you really should try not to complain.  Venting is good, so long as you keep in mind the bigger picture.  What’s a little snow when it affords you the opportunity to read and think? Use your brain to stay safe, to occupy your time, and to cope with unpleasant conditions.  I guarantee, if harm comes your way, it will be your brain that works hardest at getting you to survival and safety.  It will also be your brain that gets you to decide to stay off the streets, or to help someone who is in distress or in need.

We have so much to learn about both the healthy and the diseased brain that we can’t afford to waste time bemoaning bad weather or an unreceived box of chocolates, or anything else we think we want but don’t have.  We simply need to get busy understanding.  With knowledge comes change.  And oh, how we wish we could have saved so many of the precious souls we lost too soon to these conditions.

Let’s start our work now; let’s find out how we can prevent this epidemic of heroin and drug addiction from continuing.  Let’s learn how we can help those who suffer physical disabilities, and those who suffer from mental illness. Our brains are at the ready.  I know our hearts are in.  But it takes our brains, too.

So, please, spend this February loving and learning.  Study some brain science.    Learn about how your brain functions and all that it accomplishes.  Most of all, think happy thoughts and be grateful.  You are alive, and if you are here, you are reading.  I can’t think of two much greater things.  Love may break your heart, but living and reading will fill it.

So exclaim it with me, “I love my brain!” 

Be love.

Take care of your body, and be good to your brain.  

 

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© Debra A. Valentino, all rights reserved.