Docstoc

HEADWAYNewsletter Brain Injury Association of New Hampshire

Document Sample
HEADWAYNewsletter Brain Injury Association of New Hampshire Powered By Docstoc
					              PROVIDING RESOURCES –                                                                                                                                                           Nonprofit


               PROMOTING FUTURES
                                                                                                                                                                                            Organization
                                                                                                             THE BRAIN INJURY ASSOCIATION OF NEW HAMPSHIRE
                                                                                                             109 North State Street, Suite 2                                                U.S. Postage
                                                                                                             Concord, NH 03301                                                                 PA I D
  Consumer-based organization for people surviving brain injury,                                                        CHANGE SERVICE REQUESTED                                            Concord, NH
                                                                                                                                                                                               03301
          brain tumor and stroke and for caregivers.                                                                                                                                       Permit No. 1665

                                                            Non-Profit 501 (C) (3) 02-0397683
                                                                      Phone: (603) 225-8400
                                                                         Fax: (603) 228-6749
                                                             Family Helpline: (800) 773-8400



                                                                                                                                              Issue #49, Summer 2011

     AY
HEADW Newsletter
  IN THIS ISSUE...                                                                                              UPCOMING EVENTS...
  Researchers Urge Reclassification of Brain Injury.................. Page 1                                    Boston-Portsmouth Air Show 2011
  President’s & Executive Director’s Message ......................... Page 2                                   Pease International Tradeport
  28th Brain Injury Conference ................................................ Page 3                          Portsmouth, NH
  28th Charity Golf Tournament .............................................. Page 4                            Saturday-Sunday, August 13-14, 2011
  Guardianship & Civil Rights …..........................................… Page 6                               28th Annual Charitable Golf Tournament
  Aging with Brain Injury........................................................... Page 9                     Pheasant Ridge Golf Course
  For King, the Glass is Half Full.............................................. Page 10                        Gilford, NH
  Spotlight on Krempels............................................................ Page 11                     Wednesday, August 17, 2011


     RESEARCHERS URGE RECLASSIFICATION OF TRAUMATIC BRAIN
                  INJURY AS CHRONIC DISEASE
                                               Reprinted with permission by Centre for Neuro Skills, Inside View #19.4, Fall 2010
Traumatic brain injury, currently considered a singular event        nervous system and on cognitive and motor functions.                       cognitive function after injury, including Alzheimer’s
by the insurance industry and many health care providers, is                                                                                    dementia, Parkinson’s disease and chronic traumatic
instead the beginning of an ongoing process that impacts             Traumatic brain injury occurs when a sudden trauma causes                  encephalopathy (also known as “punch drunk” and charac-
multiple organ systems and may cause or accelerate other             damage to the brain and can be classified as mild, moderate or             terized by disturbed coordination, gait, slurred speech and
diseases and disorders that can reduce life expectancy, accord-      severe, depending on the extent of the damage. While many                  tremors). However, research shows that those who receive
ing to research from the University of Texas Medical                 patients recover completely, more than 90,000 become disabled              more therapy in the early post-injury months, irrespective of
Branch at Galveston.                                                 each year in the U.S. alone. It is estimated that more than 3.5            severity of injury and level of neuropsychological impairment,
                                                                     million Americans are presently disabled by brain injuries – suf-          were less likely to show decline over the long-term. Age is
As such, traumatic brain injury should be                            fering lifelong conditions as a result.                                    also a factor in cognitive outcome after brain injury, with older
defined and managed as a chronic                                                                                                                patients showing greater decline.
disease to ensure that patients                                      “Traumatic brain injury fits the World Health Organization’s defi-       A host of neuroendocrine disorders,
receive appropriate care                                             nition of a chronic disease, yet the U.S. health care system generally     possibly caused by complex
and       that      future                                           views it as a one-time injury that heals the way a broken bone does,”      hormonal responses in the
research is directed at                                              says Masel. “Only by reimbursing and managing brain injuries on            hypothalamic-pituitary system
discovering therapies                                                par with other chronic diseases will patients get the long-term            that ultimately lead to acute
that may interrupt the                                               treatment and support thy need and deserve.”                               and/or chronic post-traumatic
disease        processes                                                                                                                        hypopituitarism – the decreased
months or even years                                                 The researchers add that re-classifying traumatic brain injury as a        secretion of hormones normally
after the initiating in-                                             chronic disease may help to provide brain injury researchers with          produced by the pituitary gland,
jury, say co-authors Dr.                                             the additional funding required to investigate a potential cure.           which can result in several related conditions, including
Brent Masel, a clinical as-                                                                                                                     growth hormone deficiency and hypothyroidism.
sociate professor in UTMB’s                                          Masel and DeWitt’s review compiled extensive evidence that               Psychiatric and psychological diseases, which are among the
department of neurology and Dr.                                      brain trauma initiates a disease process that severely affects             most disabling consequences of traumatic brain injury. Many
Douglas DeWitt, director of the Moody Center for Traumatic           cognitive function, physiological processes and quality of life.           individuals with mild brain trauma and the majority of those
Brain & Spinal Cord Injury Research/Mission Connect and              These effects can prevent patients from fully reentering society           who survive moderate-to-severe brain injury are left with
professor in the department of anesthesiology. Masel also            post-injury and may ultimately contribute to death months or               significant long-term neurobehavioral conditions. These
serves as president and director of the Transitional Learning        years later. Specifically, traumatic brain injury is strongly              range from aggression, confusion and agitation to obsessive
Center in Galveston, which for more than 25 years has provided       associated with:                                                           compulsive disorders, anxiety/
survivors of brain injury with the special rehabilitation services   Neurological disorders that reduce life expectancy,                        mood/psychotic disorders, major
they need to re-enter the community.                                     including epilepsy, for which traumatic brain injury is the            depression and substance abuse.
                                                                         leading cause in young adults – and obstructive sleep apnea,           It is also associated with high
The literature review, which appears in a recent issue of The            which is associated with reduced cognition and severe                  rates of suicide.
Journal of Neurotrauma, examines 25 years of research on the             cardiac arrhythmias durng sleep.                                     Non-neurologic disorders, including
effects of brain injury, including its impact on the central         Neurodegenerative disorders that lead to gradual declines in               sexual dysfunction, which affects
                                                                                                                                                                                 Continued on page 10-
     AY
HEADW Newsletter                                                                                                                                        Summer 2011 - Page 2
         BIANH Officers &
         Board of Directors                                 PRESIDENT’S MESSAGE
 EXECUTIVE COMMITTEE

  Laura Flashman, Ph.D, Grantham
 President                                                                  TELL THE STORY!
  Amy Messer, Esq., Concord
 Vice-President                                                    By Brant “Bud” Elkind, President, MS, CBIS-T

                                             As I conclude my second and final term as board president, I would
                                             like to thank our excellent professional staff, our many wonderful         and I were thrown forward. I escaped uninjured, Susan hit the metal
  Richard Cunningham, Alton Bay
 Treasurer
                                             volunteers, our volunteer board of directors, our friends in state         dashboard with her head.
                                             government and administration, our brain injury provider colleagues
  Catherine Costanzo, Esq., Manchester                                                                                  Educational and service delivery systems were unknown in those
 Secretary
                                             and a very special thank you to our highly skilled Executive
                                             Director, Steve Wade. Your support has without exception been              days. My parents poured every dollar possible into private therapy,
                                                                                                                        which was exclusively physical at that time. From ages four to seven
  Scott Dow, CBIST, Hampstead                outstanding and I am very appreciative. I’ve given a great deal of
 At Large
                                                                                                                        she attended the Masonic Althea Grotto CP Clinic at Memorial Hos-
  Robin Kenney, PhD, Peterborough            thought to the following. It is written from the heart and as you will
                                                                                                                        pital in Worcester, MA. At age five she began to walk and by age
                                             see, not easy for me to write.
                                                                                                                        seven she was continent. She was never able to speak or functionally
  Daniel Louney, Bedford                     Tell the Story!
 Family Council Representative
                                                                                                                        use her hands. At age eleven she was placed at the Wrentham State
                                             For as far back as I can remember it has been incumbent on people          School. We visited every Saturday for the next 12 years. She passed
  Paul Van Blarigan, Hollis                  with brain injuries and their families to “tell the story.” It’s a grass   there at age 23. I remember her as always smiling and a joy to be
 Survivor Representative
                                             roots effort to gain acceptance, to enhance community inclusion, to        with; I miss her very much.
                                             provide knowledge and to point out how prevalent brain injury is.
  Jeremiah Donovan, MBA, CBIST, Hillsboro                                                                               My father was 72, a respected businessman, a civic leader, a great fa-
 Professional Representative
                                             We tell our story at brain injury association board meetings, support      ther and husband. Shortly before returning from Florida, my mother
                                             groups, and whenever we speak publically about brain injury or so          noticed he was having word finding problems. He saw his physician
  Brant Elkind, MS, CBIST, Keener            it would appear.
 Immediate Past President
                                                                                                                        and was CAT scanned; nothing unusual was identified. That was in
                                             I am reasonably well known for my volunteer work and as a brain            April. In early summer, his PSA test came back elevated but a
  Steven D. Wade, Concord
 Executive Director
                                             injury rehabilitation provider; most would never suspect I have a          prostate biopsy was negative. Shortly after that he drove himself to
                                             story because they have never heard me tell it. It’s not because I am      the ER at UMass. The scan revealed a brain mass. He walked into the
 BOARD OF DIRECTORS                          intentionally shirking my responsibility, it’s because I’m emotion-        hospital and could not walk out five days later. A biopsy later re-
 Donna Beaudin, OTR/L, CBIST, NHA, Salem     ally incapable of talking publically about it. There are some things       vealed a grade III inoperable brain tumor; he died six weeks later at
 Lisa Cardullo, LCSW, Manchester             in life that never resolve… and yet it troubles me that I have been        home unable to recognize any of us.
 Rocco A. Chiappini, M.D., CBIS, Milford     unable to fulfill this basic responsibility -- so here goes:               As we all know, life isn’t easy; in fact, at times it’s a real struggle and
 Laura Decoster, ATC, Manchester             Susan Rae was born four minutes after me and not a mark on her. I          some struggles never seem to go away. That’s why it’s so important
                                             on the other hand was reportedly covered in bruises. Her develop-          for each of us to tell the story as best we can. People need to know.
 Austin Errico, Ph.D., Effingham                                                                                        We can provide the statistics on mortality and morbidity relative to
                                             ment appeared normal for the first few months and then problems
 Freddi Gale, CBIS, North Conway             began to appear. It took 18 months for a cerebral palsy diagnosis.         brain injury. We can even tell people that one in every four families
 Philip Girard, MS, Deerfield                Shortly after that there was car accident. My father had the right of      has an immediate member with an acquired brain injury but none of
 Jared Green, Esq., Manchester               way and while driving through an intersection, struck another vehi-        this sends the message like one personal story. I’d like to think I’ve
 Rosalie Johnson, Dover                      cle broadside that had failed to acknowledge a stop sign. My mother        at least started to fulfill my obligation. I hope you will all forgive me
 Ellen Keith, Chocorua                       was in the front seat holding both of us. This was 1951. My sister         for not starting sooner.
 Elizabeth Kenney, Peterborough
 P. Joy Kiely, New London
 Ted King, M.D., Brentwood
                                                 EXECUTIVE DIRECTOR’S MESSAGE
 Jon Lanteigne, Bedford
 Jeannine Leclerc, Keene
                                                                   By Steven D. Wade, Executive Director of BIANH
 Margaret Lins, RN, MS, Greenfield
 Art Maerlander, PhD, Wilmot
                                                THANK YOU, Bud Elkind!
 Cynthia Mahar, Atkinson                     At the BIANH Annual Board meeting on Thursday, June
 Jeanne McAllister, BSN, MS, MHA, Wilmot     9, 2011, Bud Elkind completed his term as
 Eldon Munson, Jr., MS, CBIST, Francestown   President, and Laura Flashman was voted in as the new
                                             President for the Association.
 Sam Ruderman, Student Rep., Hopkinton
 Diane Schreck, Nashua                       Bud has ablely served as President of BIANH from 2007
 Garry Sherry, MS, North Conway              through 2011. Under his leadership, the New Hampshire
 Joe Viana, MS, Madison                      brain injury community has come together to be the
 Bob Vieira, MSW, Manchester                 strong voice for brain injury survivors and families
                                             statewide.
                                             All of us in the Brain Injury Association – board, staff, and
 EX OFFICIO
 John Capuco, Psy.D., Concord                volunteers – who have had the pleasure of
 Newton Kershaw, Jr., Esq., Manchester       working with Bud for the past four years, wish to send Bud
 John Richards, MS, MBA, Peterborough        our thanks. Bud has given so generously of his time, tal-
                                             ent, and expertise to help further the cause of brain injury.              Bud Elkins and Laura Flashman at the BIANH Annual Meeting
               Brain Injury Association
               of New Hampshire
 Publisher
                                             Submission & Editorial Policy: HEADWAY is published by the Brain Injury Association of New Hampshire. The Editor invites and en-
               Renee Fistere
 Design/Layout Cantin Design Inc.
 Editor                                      courages contributions in the form of articles, special reports and artwork. BIA of NH reserves the right to edit or refuse articles submitted

               Upper Valley Press
                                             for consideration. The Association does not endorse, support, or recommend any specific method, facility, treatment or program mentioned
                                             in this newsletter. Please submit items to: Editor, Brain Injury Association of NH, 109 North State St., Suite #2, Concord, NH 03301. For
 Printer                                     advertising rates please call 603-225-8400.
     28th Annual Brain Injury & Stroke Conference
     AY
HEADW Newsletter                                                                                                                                Summer 2011 - Page 3




On Wednesday, May 18th, the Brain Injury Associa-           beautiful artwork of this year’s Survivor Art Exhibit par-   support enables us to continue providing one of the
tion of New Hampshire (BIANH) hosted its 28th               ticipants. Thank you to all who participated: Jackie Mike,   largest and most comprehensive brain injury and &
Annual Brain Injury and Stroke conference at the            Victor DeWildt, Steve Mahoney, George Carrier and            stroke conferences in New England.
Center of New Hampshire Radisson in Manchester.             Julie Bickford. Also thank you to Nicki Beauregard and
Nearly 300 people attended. The overall feedback            Nina Hopkins for a great job coordinating every-             Lead Sponsor:
received was very positive. Many expressed that it was      thing. While not an easy decision, attendees were asked      Abramson, Brown & Dugan
one of the best.                                            to vote for their favorite artwork. Although every piece
                                                            deserved to be the winner the top three picks were:
                                                                                                                         General Sponsors:
The conference began with an inspiring keynote pres-                                                                     Braintree New England Rehabilitation Hospital
entation by Tricia Long, a survivor, psychotherapist,       #1 – Peaceful Morning by Steve Mahoney                       Crotched Mountain Rehabilitation Center
and author. As a survivor of brain injury and breast        #2 – Bird by George Carrier                                  HealthSouth Rehabilitation Hospital
cancer, Tricia is very well acquainted with the many        #3 – Life by Julie Bickford                                  Lakeview NeuroRehabilitation Center
“Seasons of Healing,” which also happened to be the                                                                      NH Bureau of Developmental Services
title of her presentation. Her personal stories were both   A special thank you to all of our presenters: Mary Am-       NH Psychological Association
comforting and inspiring. With grace, humor, and            atangelo, Nancy Bagley, Patricia Bennett, Stephen            Robin Hill Farm
                                                            Buckley, Lisa Cardullo, Paul Chudzicki, Kristen
eloquence, Tricia shared the lessons she has learned
                                                            Daniels, Lynn Durham, Lisa Ellis, Gina England, Kim-         Exhibitors:
throughout the seasons, and related how nature’s                                                                         All-Ways Accessible, Catholic Medical Center,
timeless wisdom can guide each of us.                       berly Errico, Diane Fagan, Donna Farrar, Beth Fisher,
                                                            Erin Hall, Melodee Hursey, Jennifer Jones, Marilyn           Crotched Mountain Atech Services, Defense &
During the luncheon Bud Elkind, the Board President         Lash, Tricia Long, Timothy Lukovits, Arthur Maerlen-         Veterans Brain Injury Center, Goodwill NeuroRehab
for BIANH, announced this year’s recipient of the           der, Marilyn Mills, Robert Moverman, Pamela Nation,          Services, Krempels Center, Living at Home Senior
Ellen Hayes Award. Theresa Rosenberger, president of        Eric Putney, Andrew Reeves, Jason Schreck, Michelle          Care, Living Innovations, NeuroRestorative, NH
Fairpoint Communications, was recognized for her            Stelling, Cheryl Stewart, Cynthia Student, Pamela            Vocational Rehabilitation, North Country Independent
outstanding efforts in support of individuals with brain    Thomas, and James Whitlock. We truly appreciate you          Living, Northeast Rehabilitation Hospital, Residential
injuries and of the Brain Injury Association.               sharing your time and knowledge with us.                     Resources, Inc., River Ridge Center, Rose Meadow,
                                                                                                                         Spaulding Rehabilitation Network, St. Joseph Hospital
Throughout the day attendees were able to view the          Thank you to all of our sponsors & exhibitors. Your          Rehab Center.
             28th ANNUAL CHARITY GOLF TOURNAMENT
     AY
HEADW Newsletter                                                                                                                                                   Summer 2011 - Page 4




The Brain Injury Association of New Hampshire’s 28th               a bag lunch, several contests and raffles, followed by a                 All registrations must be received by July 22, 2011.
Annual Charity Golf Tournament, hosted by Robin Hill               buffet dinner and awards ceremony. To register a team,                   The tournament is limited to the first 144 players, so
Farm, Inc., will be held on Wednesday, August 17, 2011,            simply fill out the registration form and mail it with a                 register early!
at Pheasant Ridge Golf Club in Gilford, NH. In addition            check for your foursome. If you are a single player we
to being a fun day of golfing, the tournament raises               will do our best to make arrangements for you to join a                  For more information about this event, please contact
monies to support vital programs for New Hampshire                 team. The fee is $125 per player or $500 for a foursome.                 BIANH at 800-773-8400 or 603-225-8400, or email:
brain injury and stroke survivors and their families.                                                                                       ron@bianh.org. You may also visit our website at
                                                                   A variety of sponsorship opportunities are also                          www.bianh.org.
There are several ways to participate in this event:               available to suit all needs and budgets.
enter a team, become a sponsor, make a monetary
donation, donate a raffle prize, or provide items for the          To be a sponsor or donor, please complete the sponsor-
gift bags given to each golfer.                                    ship portion of the registration form, marking off your
                                                                   level of support, and mail it with your payment. We
Registration includes a welcome package, golf and cart,            will contact you if we need anything further.

                                                                   Brain Injury Association of New Hampshire
                                                                   28th Annual Charitable Golf Tournament
                                                                   Pheasant Ridge Golf Course, Gilford, NH
                                                                   Wednesday, August 17, 2011
        All registration must be received by Friday, July 22, 2011. Limited to 144 Golfers – sign up early

 Name/Company
 Address                                                             City                 State                 Zip
 Phone                                             Fax                          Email
 Please indicate team preference                   Singles           Foursome             Foursome with Hole Sponsor
                             Attendees – Name & Information (please print clearly)
 TEAM CAPTAIN                                                                                               Attending Lunch?
 1. ________________________________________                             Male             Female              Yes      No
    Shirt Size - w SM w M w LG w XL w XXL

 2. ________________________________________                             Male             Female                Yes          No
  Shirt Size - w SM w M w LG w XL w XXL
 3. ________________________________________                             Male             Female                Yes          No
  Shirt Size - w SM w M w LG w XL w XXL
 4. ________________________________________                             Male             Female                Yes          No
  Shirt Size - w SM w M w LG w XL w XXL
          SPONSORSHIP OPPORTUNITIES!                                 REGISTRATION FEES–$125/ person or $500 / team
                                                                   Each contribution includes grees fees, golf cart, welcome bag,
 All levels include signage at site of sponshorship, recognition      continental breakfast, a bag lunch, and a buffet dinner.
 at awards banquet, tournament program, in the HEADWAY                   A portion of your contribution is tax deductible.
 quarterly newsletter, and on BIANH website.
      EVENT SPONSOR                                $2,000                 PAYMENT                    Check            Credit Card

                                                                                       Visa / MasterCard / Discover
     (includes 4 players)                                            Credit Card # _____________________________________

                                                                     Expiration Date___________ Total Charge$________
     DINNER SPONSOR                                $1,500

                                                                     Name on Card________________________________
     (includes 2 players)

                                                                     Address_____________________________________
     PRIZE SPONSOR             $1,000

                                                                     ____________________________________________
     GOLF CART SPONSOR           $750

                                                                     ST______________________ ZIP_____________
     HOLE-IN-ONE SPONSOR         $500
                                                                     Payment must be received in full with registration. All
     PUTTING GREEN SPONSOR       $400
     HOSPITALITY SPONSOR         $300                                   registrations must be in by Friday, July 22, 2011.
                                                                   It is important that you notify the BIANH office prior to the
     TEE/GREEN SPONSOR           $200

     We are always in need of merchandise, gift certificates,              tournament if you have changes in your team.
     RAFFLE PRIZE/WELCOME BAG DONATION
     and/or money to use as contest raffles prizes. Donate 150         Send this completed form along with your payment to
     of a single promotional item for the welcome bags and
     get your company’s name out to all in attendance.                   THE BRAIN INJURY ASSOCIATION OF NH to
                                                                         Brain Injury Association of NH–Golf Tournament
     Description: ___________________________                           109 North State Street, Suite 2, Concord, NH 03301
     ______________________________________                          All proceeds raised through this event are used to support programs
                                                                    focused on brain injury prevention and to provide emergency financial
                                                                                  assistance to survivors and their families.
     AY
HEADW Newsletter                                                                               Summer 2011 - Page 5




                                               The 2011 7th edition of the BIANH Resource Directory is
                                              available to any facility or individual who would like a copy.
                                               You may download an electronic version available on our
                                              website (www.bianh.org) or there are booklets available by
                                                            calling our office–603-225-8400.

 AFTER INJURY OR STROKE
    THE BRAIN CAN HEAL




 There are options. We can help.
 After a brain injury or stroke, a person may go back home or to work…
 but still may need additional care. We provide intensive outpatient
 services, that can significantly improve a patient’s functioning - months
 or even years after the original brain injury. Ask your doctor about a re-
 ferral to Crotched Mountain. Information is available in the Outpatient
 Services section of our website: www.crotchedmountain.org


                          Outpatient Adult Brain Injury Services
                          One Verney Drive, Greenfield, NH 03047

                          603.547.3311 ext. 1660
   CROTCHED               and toll-free in NH 800.258.1466
   MOUNTAIN               email: outpatient@crotchedmountain.org
                              Guardianship and Civil Rights
     AY
HEADW Newsletter                                                                                                                                                         Summer 2011 - Page 6



                                                               By Julia Freeman-Woolpert, M.Ed.r


Amber Parshley is a member of the Lakes Region Self Advo-            processes and safeguards to protect the individual’s rights, to en-    judge how important it was to her
cacy Group, a member and former President of People First, and       sure that unnecessary guardianships are not granted, and that the      that she maintain her independ-
a nationally recognized self advocate. She is passionate about       person’s liberty is preserved as much as possible. The petitioner      ence. She explained that she
the rights of people with disabilities and has travelled to many     must prove that the proposed ward “has suffered, is suffering, or      could make her own decisions
national conferences on self advocacy. Ms. Parshley lives            is likely to suffer substantial harm due to an inability to provide    and understood their conse-
independently in an apartment with her beloved cat Ophelia. She      for his or her personal needs for food, clothing, shelter, health      quences. She told the judge she
fiercely values her independence. In order to maintain that          care or safety, or an inability to manage his or her property or fi-   had a durable power of attorney for health care and a living will.
independence, she relies on services and supports from Lakes         nancial affairs.” Guardianship can only be ordered after the court
Region Community Services (LRCS), the local area agency for          has determined “beyond a reasonable doubt”, the highest burden         The petitioner must prove that there are no suitable less restrictive
developmental services and acquired brain disorders.                 of proof under the law, that:                                          alternatives to guardianship. Some examples of alternatives would
                                                                         “The person for whom a guardian is to be appointed is              be a revocable power of attorney or conservatorship; supportive
Ms. Parshley and LRCS don’t always see eye to eye about how                incapacitated; and                                               services such as visiting nurses, homemakers, home health aides,
Ms. Parshley should conduct her life. LRCS thought she was               The guardianship is necessary as a means of providing              and adult day care; a friend or mentor willing to give advice and
making poor decisions and wasn’t cooperating with treatment                continuing care, supervision, and rehabilitation of the          support in making good decisions; and a representative payee for
and services. When her Resource Facilitator told her that LRCS             individual, or the management of the property and financial      social security benefits.
was going to file a petition to obtain guardianship over her, Ms.          affairs of the incapacitated person; and
                                                                         There are no available alternative resources which are             Amber told Attorney Whitley of people that knew Amber well
                                                                           suitable with respect to the incapacitated person's              and could testify about Amber’s ability to make good decisions
                                                                           welfare, safety, and rehabilitation or the prudent               and the types of supports that could assist Amber in continuing to
                                                                           management of his or her property and financial                  live independently. Attorney Whitley presented those witnesses
                                                                           affairs; and                                                     to the Court to establish that there were less restrictive
                                                                         The guardianship is appropriate as the least restrictive form      alternatives available, that with supportive services from LRCS
                                                                           of intervention consistent with the preservation of the civil    Ms. Parshley could maintain her independence and, in fact, had
                                                                           rights and liberties of the proposed ward.”                      done so for the past 20 years. She presented evidence that LRCS
                                                                           RSA 464-A:9                                                      was not currently providing all the services that had been
                                                                                                                                            budgeted for Ms. Parshley.
                                                                     In a guardianship proceeding, the proposed ward has a right to
                                                                        The effective assistance of a lawyer who zealously represents       Ms. Parshley prevailed in Probate Court. The judge found that
                                                                          the client’s expressed interests, preferences and decisions to    there were suitable alternatives: appropriate services from the
                                                                          the court                                                         petitioner, LRCS. The judge found that Ms. Parshley was not
                                                                        Notice of all the hearings and proceedings                          receiving all of the services that had been budgeted for her, and
Parshley didn’t believe it. “I thought they were kidding around         Attend the hearing and present evidence and testimony               that with those services, Ms. Parshley could live independently.
at first,” she said. But it wasn’t a joke: LRCS had indeed filed a   The lawyer for the proposed ward has an obligation to:
petition alleging that Ms. Parshley was incapacitated and not           Challenge the petitioner’s claims for the need for                  “I was quite surprised when the judge agreed with me,” Ms.
taking care of herself. She saw it differently. “I thought they           guardianship and the claim that there are no less restrictive     Parshley said. She was pleased with the decision because,
were trying to threaten me because I wasn’t doing what they               alternatives                                                      “it shows the agency they can’t control people.”
wanted me to do,” she said.                                             Advocate for what the client wants, which can be different
                                                                           from the client’s best interests.                                As of this writing, LRCS is still not providing Ms. Parshley with
Guardianship is a significant infringement on a person’s liberty        Meet privately, in person, with his or her client to discuss the    all of the services she is supposed to be receiving.
and autonomy, and as such it is not a step that can or should be          claims in the petition and how to challenge them
taken lightly. A guardianship removes from the ward the                 Address all the issues the client raises                            “I do think some people need guardians,” said Ms. Parshley. “But
freedom to make certain decisions and gives that authority to           Contact and interview any witnesses the client suggests, and        guardianship has to be thought out very carefully. When they
another person or entity. The guardian is required to exercise            have them present evidence and testimony                          apply for guardianship they really need to think of what they are
substituted judgment and makes legally binding decisions on                                                                                 doing.”
behalf of the ward in order to protect and advance his or her        Disabilities Rights Center Attorney Rebecca Whitley represented
well-being and safeguard property. Depending on the terms of         Ms. Parshley in Probate Court. She argued that Ms. Parshley was        “Self determination is such an important civil right,” Said
the guardianship, the guardian can make decisions about treat-       capable of making informed decisions about herself, and that           Attorney Whitley. “It can’t be taken lightly. Petitioners need to
ment and services, decide on living arrangements, decide             even if she makes choices that the Area Agency does not believe        realize it’s a last resort.”
whether or not the ward can marry, dispose of the ward’s assets,     to be in Amber’s best interest, “it is not the agency’s job to
and determine many other details of the ward’s present and fu-       ‘protect’ Ms. Parshley from every potential harm or risk that is       The Disabilities Rights Center provides protection and advocacy
ture life.                                                           encountered in every day living .”                                     statewide for people with disabilities. Learn more about the DRC
                                                                                                                                            and your rights, and see our newsletter, the RAP Sheet, at
The New Hampshire law, RSA 464-A, puts into place strict             Ms. Parshley took the stand in her defense and explained to the        www.drcnh.org.
                     LEGISLATIVE SECTION – Summer 2011
     AY
HEADW Newsletter                                                                                                                                                                  Summer 2011 - Page 7



                                                                         Period of Purple Crying, By Ellen M. Edgerly


The Brain Injury Association of New Hampshire was awarded               to be an improvement on current best practices for the prevention          Clear, memorable, and meaningful with a positive message.
a Part C Stimulus Funds Grant through the New Hampshire                 of shaken baby syndrome by combining the PURPLE materials                  Designed to be interesting and relevant for both males and females.
Bureau of Developmental Services. These funds were targeted to          with the Mark Dias hospital-based distribution in maternity                The PURPLE program model requires that each family receives
be used for the prevention of Shaken Baby Syndrome in New               wards, but adding a second “dose” of reinforcement by public               the materials in the hospital or at the time of their child’s birth so
Hampshire.                                                              health and physician practices, and by including a public                  they can review the program when needed and share it with other
                                                                        education and media campaign for the general public as the                 caregivers.
One of the goals of the grant was to create a statewide coalition       “third dose.”
that would consist of stakeholders who are committed to the pre-                                                                                   Funds from the grant have been used to pilot three Period of
vention of Shaken Baby Syndrome. As a result the Abusive                The Period of PURPLE Crying program was designed and                       PURPLE Crying programs located at the Catholic Medical Cen-
Head Trauma Coalition was formed that consists of a team of             approved by pediatricians, public health nurses, child develop-            ter in Manchester, the Elliot Hospital in Manchester and St.
knowledgeable and committed individuals. The coalition meets            ment experts, and parents. The program is:                                 Joseph Hospital in Nashua.
on a quarterly basis and welcomes interested members.
                                                                        Educational and attractive to parents of newborns.                         If you would like additional information on the Abusive Head Trauma
Some of the funds have been used to fund a national program             Relevant for all parents while emphasizing the dangers of shaking          Coalition, please contact Ellen Edgerly, Project Coordinator for the
called The Periodof PURPLE Crying. The program is designed              a baby.                                                                    Brain Injury Association of New Hampshire at (603) 332-9891.


                                            The Letters in PURPLE Stand for


        P U R P L E
  PEAK OF CRYING
  Your baby may cry
  more each week.
  The most at 2
                                        UNEXPECTED

                                        Crying can come
                                        and go and you
                                                                            RESIST SOOTHING

                                                                            Your baby may not
                                                                            stop crying no
                                                                                                                 PAIN-LIKE FACE
                                                                                                                 A crying baby may
                                                                                                                 look like they are in
                                                                                                                 pain, even when
                                                                                                                                                    LONG LASTING
                                                                                                                                                    Crying can last as
                                                                                                                                                    much as 5 hours a
                                                                                                                                                                                        EVENING
                                                                                                                                                                                        Your baby may
                                                                                                                                                                                        cry more in the late
                                                                                                                                                                                        afternoon or
  months, then less at                  don’t know why                      matter what you try                  they are not                       day, or more                        evening




                                   CALLING OUT FOR A LIFEBOAT
  3-5 months




                                                                                             By Ellen M. Edgerly

It was recently the anniversary date of the sinking of the Titanic an   Captain Edward John Smith and the crew of the Titanic knew in              mental disabilities and when individuals with brain injuries and
unforgettable tragedy on April 15, 1912. As you are aware, the          1912 that the first individuals to be removed from the sinking ship        developmental disabilities are wasting away in institutions because
passenger liner struck an iceberg on her maiden voyage from             should be the children and woman. He knew the most humanitarian            there is no funding for community supports, I will tell you that this
Southampton, England, to New York City and sunk along with              decision was to load them first on the sparingly few lifeboats avail-      is a very real tragedy. In addition, state and federal governments will
1,517 souls.                                                            able. Will the Senate have the courage to refuse the unjust cuts that      be required to pick up the debris afloat of these cutbacks such as
                                                                        have been proposed for individuals with disabilities and understand        unemployment wages, low-income housing, Medicaid, unpaid
In likelihood I may have had an ancestor on the ships that sailed be-   that our New Hampshire budget should be a people-first budget?             property taxes and increased requests for local town/city welfare ¿ to
fore or after the Titanic to our great country. If my ancestors were                                                                               name a few debris afloat.
anything like me they supported the principles of our state's motto,    Did you know that a U.S. Senate investigation in 1912 of the Titanic
"Live Free or Die." But I have fear of the actions being demon-         found a disturbing detail in that there were no binoculars in the crow's   My daughter Sara has a brain injury and has a closer connection to
strated in Concord recently of a new motto of "Who cares if our         nest of the Titanic on the day of the accident? The investigators of the   New Hampshire than I as she is the sixth generation of Edgerly's that
most vulnerable citizens live free or die?"                             Titanic accident asked the surviving crew members: without binocu-         have called Rochester their home. She has strong roots and is firmly
                                                                        lars how could the lookouts perform their duties?                          entrenched in her native soil. Our family does not share the opinion
                                                                        Our legislators needs to find and look into their binoculars when          that current public policies and legislation that have been in place
                                                                        making decisions to see the long-term fiscal and human impacts of          for individuals with disabilities are flawed and need to be eliminated.
                                                                        these cuts as they relate to individuals with brain injuries and           In fact, I signed onto a petition for the acquired brain disorder waiver
                                                                        developmental disabilities. Do they realize that if waitlist money to      many years ago to bring our children home to New Hampshire from
                                                                        enable individuals to live in the communities is eliminated the state      out of state. I continue to be proud that our state stepped up to the
                                                                        will be incurring far more expensive costs for institutional               plate and instituted this waiver.
                                                                        placements? Unfortunately there will be more requests from
                                                                        families as they will not be able to care for their loved ones in their    As I compare this analogy also to the state budget. I admit we are in
                                                                        homes as they will be unable to work and provide a living. In fact,        a crisis situation. But should the most vulnerable citizens of New
I would like to use the analogy between decisions that came out of                                                                                 Hampshire be denied the lifeboat of services to stay afloat in our so-
                                                                        both the developmental disability and the acquired brain disorder
the Titanic with decisions made for the House's state budget cuts for                                                                              ciety? Unfortunately economic times have changed since Joan and
                                                                        waivers are not funded solely 100 percent by our state. Fifty percent
individuals with brain injuries and developmental disabilities.                                                                                    Ward Cleaver. We do not have family members who are afforded the
                                                                        of the services of the waivers are funded by the state and 50 percent
                                                                        by the federal government. Are we the people of New Hampshire in           luxury to stay home to provide ongoing support and we do not have
You read this and think this may not be a true comparison. Yes, I                                                                                  churches that can totally support our most vulnerable. We cannot do
                                                                        a financially stable enough position to not accept help/match from
agree that nothing can replace the tragic death of 1,517 individuals,                                                                              it alone.
                                                                        the federal government?
but I will also tell you individuals with disabilities and their
families are on chartered courses that are not in their life course     When families are unable to work because there are no services             When the call is made to board a lifeboat I pray that I can secure one
and the proposed cuts are a true tragedy waiting to happen.             available for their family member with brain injuries and develop-         large enough for Sara and for all individuals with disabilities.
     AY
HEADW Newsletter                                                                                                                            Summer 2011 - Page 8


 BOSTON-PORTSMOUTH
                                                                                                                       In order to make this another captivating
                                                                                                                       event, we are looking for MANY volun-

      AIR SHOW
                                                                                                                       teers to help us throughout the weekend.
                                                                                                                       Last year’s Air Show attracted a record
                                                                                                                       crowd of 70,000 spectators, but we need
 Saturday & Sunday, August 13-14, 2011                                                                                 your help to make this another successful,
                                                                                                                       family-fun weekend.


  VOLUNTEERS NEEDED!
                                                                                                                       BIANH has previously hosted other air
                                                                                                                       shows in 2000, 2007 & 2010. Air shows are
                                                                                                                       wonderful family events, and the ones
                                                                                                                       we have hosted have done tremendously
 The Brain Injury Association of New
                                                                                                                       well in making the general public more
 Hampshire and The Boy Scouts of                                                                                       aware of the“silent epidemic”of brain
 America are co-sponsors of the                                                                                        injury issues.
 Boston-Portsmouth Air Show to be
 held at the Pease In-ternational                                                                                      If you are interested in volunteering your
 Tradeport in Ports-mouth, New                                                                                         services for the Air Show weekend, please
                                                                                                                          contact Ron Snow or Lori Sandefur at
 Hampshire. The USAF Thunderbirds                                                                                                BIANH — 603-225-8500
 will be mak-ing a special appearance                                                                                               ron@bianh.org or
 at this year’s air show. It has been 25                                                                                        sandefur4@comcast.net
 years since the Thunderbirds have
 performed in the New England area.                                                                                       Mark your calendars!


                                                       at the Boston-Portsmouth Air Show,
 P UL L                                                         August 13-14, 2011
                for                                   The Pull for Wounded Warriors is a fundraising event at
                                                      the Boston-Portsmouth Air Show to benefit the Brain
                                                      Injury Association of New Hampshire, and its work with
                     Wounded                          wounded warriors living with traumatic brain injury. The
                                                      benefactors are men and women who have suffered
                     W a rr i o r s                   injuries from the wars in Iraq and Afghanistan, and young
                                                      survivors of brain injury.

                      ine
                 M achPull for the Wounded Warriors is a giant tug-of-war between your team
              vs- The
        M an-           and a huge aircraft weighing more than 98,000 pounds

    How can you compete in this battle of strength, stamina and fun?

     Recruit friends, family members and co-workers to form your team

                    You must have no more than 20 members on your team
                                    Teams must raise a minimum of $1,500 in order to participate

                                             Ask your company for sponsorship

                                                                Collect pledges
                                                                                   Hold fundraisers

                                                                                   For more information about the
                                                                                   PULL for Wounded
                                                                                   Warriors please contact
                                                                                   Ron Snow — Brain Injury
                                                                                       Association of New Hampshire,
                                                        Wal-Mart—Plane Pull 2010      603-225-8400 or ron@bianh.org




   Newington Tug Boats—Plane Pull 2010
                                            Aging with Brain Injury:
     AY
HEADW Newsletter                                                                                                                                                                                Summer 2011 - Page 9



              By: Michael P. Mozzoni Ph.D./BCBA, Director of Behavioral Services, Lakeview NeuroRehabilitation; and Thomas Felicetti, Ph.D.,
             Executive Director, Beechwood Rehabilitation Services/Woods Services ----reprinted with permission, The CHALLENGE! Winter 2011
                                                                                                                     Return to work frequently involves a modification of premorbid job demands. Employer accommodation is
  Vocational Impact Issues and Indicators


                                                                                                                     67%
                                                                                                                     crucial to job maintenance. Johnson (1987) noted that of those people with brain injuries who successfully re-
  For almos all adults, work is a vital part of existance, providing                                                 turned to the job, 67% had special work conditions, such as adjusted workload, support of a work colleague or
  structure to the day, an obvious means of financial support and , in                                                                    personnel officer, and the employer’s tolerance of difficulties and disruption. He found that
  many instances, a validation of self-woth. Yet, after a brain trauma,                                                                   the nature of the disability played less of a role in job maintenance than the working condi-
  there is often a dramatic change in vocation in terms of ability, place-                                                                tions. MacKenzie et al. (1987) similarly noted the positive effects of a supportive work en-
  ment and accommodation. As indicviduals age with brain injury, these                                                                    vironment that included one or more confidants. Klonoff et al. (2000) noted that a stable
  changes increase, risking further erosion of equality of life.                                                     work history was a good indicator of returning to competitive activity. Individuals with higher levels of educa-
                                                                                                                     tion were more likely to return to competitive employment than those with less than a high school diploma
H   ere, we review the literature concerning vocational issues associated with traumatic brain injury, with ad-      (Ezrachi et al., 1991). Dikmen et al. (1994) found that education level, pre-morbid job stability, injury severity
                                                                                                                     and neuropsychological test findings were predictive of employment status. Certain specific cognitive deficits
ditional data from a large survey conducted by a task force of the American Congress of Rehabilitation Med-
icine, which examines rate of return to work and pre-morbid factors that influence this issue. Issues                are associated with poorer employment outcomes; most prominent are memory, verbal skills and executive func-
concerning the sequelae of brain injury that impact vocational success, attitudinal and physical barriers in         tioning abilities (O’Connell 2000; Fleming et al., 1999; Cifu et al., 1997; Ezrachi et al., 1991; Ben-Yishay et al.,
the workplace and modifications are also examined.                                                                   1987; Van Zomeren et al., 1985; Prigatano et al., 1984; Thompson 1984). In a seven-year follow-up study, Oddy
                                                                                                                     et al. (1985) noted a pattern where if an individual had not gained employment within two years of injury, then
The Long Term Issues Task Force (LTITF) is under the Brain Injury Interdisciplinary Special Interest Group           he or she was unlikely to ever return to work.
(BI-ISIG) of the American Congress of Rehabilitation Medicine (ACRM). The task force investigates a va-
riety of long-term issues related to the aging of people with brain injury. As a part of this investigation, the     Self-awareness was found by multiple researchers to be an important factor in returning to work. Ben-Yishay
LTITF conducted a survey of people who were 10 years or more post injury, had sustained a traumatic brain            & Larkin (1989) noted that individuals who had not reached acceptance of their disability would not be pro-
injury after age 16 and were currently at least 30 years of age. (Trudel et al., 2001)                               ductive in the community. Prigatano et al. (1994) and later Trudel et al. (1998) reported that impairments of
                                                                                                                     awareness had an impact on employment. Specifically, acceptance of changed condition appears to be a key el-
Incidence of Return to Work                                                                                          ement in successful return to employment.




75%
Research studies concerning the rate of return to work for people with acquired brain injury ABI) demon-
                     strate a significant decline relative to pre-injury employment rates. Testa et al. (2005),      Attitudinal Barriers
                     found 75% of people who were 50 years of age or older at the time of their injury were          In a review of people with traumatic amputation, cancers, and spinal injury (SCI) but not TBI, return to work




                                                                                                                                                                                                                       14%
                     not working one to two years after injury. Other researchers noted that return to work was      was problematic due to physical limitation and discrimination, rather than cognitive and social interaction im-
                     negatively impacted at age 40 or older (Sander et al., 1996; Ponsford et al., 1995; Mc-         pairments. Bordieri et al. (1991) found that people with cancer were discriminated in hiring recommendations
Mordie et al., 1990). Wehman et al. (2005) reported that Benefits Planning, Assistance and Outreach (BPAO)                                                                vis-a-vis those with equal qualifica-
data revealed approximately 20% of people with TBI who received services were employed either full or part                                                                tions who reported pneumonia. They
time. Brooks et al. (1987), found fewer than 30% of the people they followed with severe acquired brain in-                                                               reasoned the more blame attributed to
jury (ABI) were employed at follow-up at two to seven years. MacKenzie et al. (1987) reported that 43% of                                                                 the applicant, the lower the hiring rec-
people sustaining a brain injury had returned to work within one year. Jacobs (1987) reported that 47% of                                                                 ommendation…“The applicant with colon cancer was
people with TBI interviewed were working or attending school, but only 27% were actually working. Na-                                                                     rated as more responsible for his disability than his coun-




                                                                                              30%
jenson et al. (1980) found 42.5% of patients with slight cognitive impairment were competitively employed,                                                                terpart with bone cancer” (p13). The inference is that peo-
while 18.8% of patients with severe impairment were competitively employed.                                                                                               ple with a disability may be challenged in the job market
                                                                                                                                                                          for reasons other than their ability to perform the job.
Seemingly counter to the trend, Klonoff et al. (2000) reported that of nine patients who
completed their program and were 11 years post discharge, 76.8% were engaged in com-                                                                                           MacKenzie et al. found that 75% of those with minor SCI




42%
petitive activity with no decline in productivity. Working for pay or in school, either full                                                                                   (as qualified by the Abbreviated Injury Scale) returned to
                     or part time, was rated as competitive activity. Klonoff et al. used screening criterion        work while only 14% of those with severe SCI injuries were able to return to full time employment. The more
                     that included, “no significant psychiatric disability, no substance abuse, and strong mo-       severe the injury, the greater the difficulty in returning to work. This is consistent with the TBI literature. Dilling-
                     tivation to become productive” (p.1536). Fraser et al. (1988), reported higher return to        ham et al. (2000) reported that 75% of people with traumatic amputations required occupation changes but 58-
                     work levels (80%), with 40% of those reporting work problems related to their injury.           90% returned to work, most in lower paying jobs. People with TBI most likely encounter similar occupational
                                                                                                                     changes.
Although Fraser studied those with higher education and skilled employment levels, he speculated the em-
ployment rate would decline significantly within two years. Weham et al. (2005) conclude from an exten-              Some factors reported in the literature that are associated with employment of people with TBI include: cogni-
sive review of the literature that return to work is beneficial to the individual with TBI in non-vocational areas   tive impairments in the mild range for memory and executive skills (Cifu et al., 1997; Prigatano et al., 1984),
such as reduced depression and reduced likelihood of substance abuse.                                                testability at one month post injury (Dikmen et al., 1994), verbal skills and aptitude (Lam et al., 1991; Isaki &
                                                                                                                     Turkstra 2000), community integration (Ezrachi et al., 1991), ability to drive independently and employment in
In a LTITF pilot study of people with TBI who were 10 years or more post injury, Trudel et al. (2001) found          a large business (Ainsley & Gilner 1989), returning to the same job, modified working conditions (Johnson
only 18% of respondents reported some level of employment (full or part time). In the larger LTITF survey,           1987), higher intelligence, education and professional training (Dikmen et al., 1994). Larger companies are bet-




                                                                                             18%
just 12% of respondents were competitively employed with another 20% reporting sheltered or supported em-            ter able to make job accommodations/modifications whereas smaller businesses have fewer options for job
ployment. These findings are consistent with the research literature where employment                                changes within the company. Social skills and personal grooming are essential for maintaining a job beyond the
of those with TBI decreases as the years go by. Kolk (1991) summarized the issues best.                              person’s ability to do the job.
He said, “as a general rule the more severe the head injury, the more severe the symptoms,
and consequently the greater difficulty in preparing the person for functioning on a job”                            While the data clearly show behavioral and cognitive impairments, as well as education, age at time of injury
(p16).                                                                                                               and time since injury are barriers to vocational success, it seems important to weigh the relative impact of each
                                                                                                                     factor. Scherer et al. acknowledge that field observers frequently note the social skills and behavior of an indi-
Pre-morbid Fac tors and Post-injury Sequelae                                                                         vidual with brain injury in the workplace can be more upsetting to the employer and coworkers than the need
                                                                                                                     for environmental compensation due to physical or cognitive deficits.
Returning to work is a significant outcome for people with brain injuries. Productivity and personal identity
are intimately associated with a person’s quality of life. People frequentlydefine others by their occupation;       With help, individuals with brain injury may develop the strategies needed to overcome cognitive limitations,
asking what one does for a living is a common social question. Unfortunately, sequelae associated with a brain       but the work setting seems far less forgiving of behavior outbursts, diatribes against the boss, verbal disinhibi-
injury frequently contribute to unemployment, under-employment or an inability to maintain employment.               tion and physical and emotional intrusions into the life and space of co-workers. It is disturbing to note that peo-
Cognitive and behavioral impairments are associated with functional outcomes (Sherer et al., 2002). People           ple with TBI have significant difficulty obtaining and maintaining competitive employment due to social skill
with brain injuries who are less impaired are more likely to be employed. While these findings seem obvi-            deficits. These deficits may stem fromimpaired self-awareness, impaired ability to recognize emotions in oth-
ous, there are other factors involving pre-morbid history, employer accommodation and discrimination that            ers and themselves (Neumann 2007) and difficulty in accepting the change in functional skills.
can affect successful job maintenance. For instance, people with a history of gainful employment are more
likely to return to work than those who were injured before developing a work history or job skills (Dikman                                                                                                    Continued on page 11
et al., 1994).
                       FOR KING, THE GLASS IS HALF FULL
     AY
HEADW Newsletter                                                                                                                                                                 Summer 2011 - Page 10



                                                                   Courtesy of Seacoast Media Group, reprinted with permission

At 6:30 a.m., March 23, 2003, Margie King noticed her husband               But these activities could no longer be a part of Ted's routine. His      Ted was flown to Massachusetts General Hospital for observation,
Ted was not responding to his alarm clock.                                  goal was to re-learn how to perform the most basic of activities, such    but this stroke was mild.
                                                                            as eating and being able to button his own shirt and pants.
Working as an orthopedic and hand surgeon at Access Sports                                                                                            Ted attributes his son's knowledge of the symptoms as to why he was
Medicine and Orthopaedics in Exeter, Ted received an emergency              "Not everybody has the chance to live their life over again, but          treated in time for a second stroke.
call from Exeter Hospital the night before, and arrived home late.          anybody who's a brain injury survivor has done just that," said Ted.
But still, it was odd to Margie that Ted would be sleeping in.              Margie noticed that spatial reasoning and mathematical problems
                                                                            were the biggest challenge for her husband after the stroke. He has
Ted's sister and brother-in-law, Kathy and Jim Raybin, were in town         minimal sensation on his left side and has needed Margie's assistance
visiting from Colorado and had were staying at their house. Jim was         with basic tasks. In addition, Margie has noticed Ted, who had
in the medical field, so Margie had him check on Ted because                always been a man of few words, has a lot more to say these days.
intuition told her that her something was wrong.
                                                                            "He's much more chatty," said Margie.
Jim checked for all the possible
signs of a stroke: Weak response on                                         Of all the aftercare Ted received, it was at Krempels Center for Brain
the left hand, and a droop to the left                                      Injury Survivors in Portsmouth he found the most healing. He has
side of the face. Ted was once again                                        been able to share his experience with others in support groups, as
rushed to the ER at Exeter Hospi-                                           well as partake in a few art classes, with sculpture being the most
tal, this time as a patient.                                                therapeutic. He also participated in an outreach program, during
Ted suffered a severe right cerebral                                        which he visited numerous colleges, high schools and elementary
hemisphere ischemic stroke caused                                           schools to talk about neurological injuries.                              In 2010, Ted delivered a sermon at Squirrel Island (Maine) Chapel
by the dissection of his right inter-                                                                                                                 in 2010 for an all-island service at the end of the summer. He titled
nal carotid artery. This meant he experienced a blockage in the right       "It gave my life meaning and fulfillment," said Ted.                      it, "My Wilderness Experience," as it addresses the isolation he often
side of his neck, which sent a blood clot to the right side of his brain.                                                                             felt as someone recovering from a brain injury. He has often felt he
                                                                            "It's a really sharing, caring place," said Margie of Krempels.           is living in exile.
There are two reasons why Ted King is lucky. One, his stroke was            He was also asked, through Krempels, to be a visiting lecturer at
one of the ischemic (clot) variety, as opposed to a hemorrhagic                                                                                       "Christian healing prayer was certainly one of the things that made
                                                                            for the occupational therapy program at the University of New             the difference," said Ted.
(bleed). When a person experiences a clot, he or she can be given a         Hampshire, to discuss upper extremity injuries encountered in the
Tissue Plasminogen Activator (TPA) to dissolve the clot and                 workplace, which had been the focus of his career. He presents this
prevent a coma, or death. However, the TPA must be administered                                                                                       His next move is a memoir. He's part of a writing group at the Mary
                                                                            lecture every fall, and what he likes most about it is that he can        E. Bartlett Library in Brentwood, where he's practiced with memoir
within three hours of the stroke, which leads to the second reason          continue to use his experience in orthopedic and hand surgery by
why Ted was lucky. Margie knew that Ted had experienced the                                                                                           writing and creative non-fiction. He's ready to share his story with
                                                                            teaching.                                                                 the rest of the world with a book titled, "The Road to Hana: My
stroke after 5:30 a.m. because she saw her husband get up to use the
bathroom. So when he arrived at the hospital, officials knew he had         Ted had been a physics major at Wesleyan University in Middletown,         Journey of Recovery."
experienced the stroke within the last two hours.                           Conn., but he decided to pursue medical school. He volunteered in
                                                                            the emergency room at Massachusetts General Hospital and got his          "I always thought I had a book in me," he said.
Within five minutes of the TPA injection, Ted said he immediately           medical degree at Case Western Reserve University in Cleveland.
regained movement in his left side.
                                                                            Ted and Margie met in 1968 in New London, Conn. at a mixer
"I said to myself, 'Cool I'm getting better already," said Ted.             between their colleges. He'd asked her to dance, and they continued
The next day his nurses noticed his pupils were different sizes and         on with a long-distance romance while he studied in Cleveland. They
                                                                            were married Aug. 14, 1971.                                               Continued from page 1- Researchers Urge
that he may have been suffering from cerebral edema, which is an                                                                                      Reclasification of Traumatic Brain Injury
excess of water within the brain. He was sent to the Lahey Clinic in        They know that divorce is common for couples when a spouse
Massachusetts in case he needed an operation to reduce any                  suffers from a brain injury.                                              40-60 percent of patients; incontinence; musculoskeletal
swelling, however, the swelling never occurred and he did not need                                                                                    dysfunction, or spasticity that results in abnormal motor patterns
the surgery.                                                                "Margie really took the wedding vows seriously," said Ted, referring      that may limit mobility and independence; and metabolic
                                                                            to the section that states, "in sickness and in health, til death do us   dysfunction, as brain injury appears to impact the way the body
Ted spent the next month at HealthSouth Rehabilitation Hospital of          part." This year, they will be celebrating their 40th anniversary.        absorbs, utilizes and converts amino acids, which play a critical
Concord until he finally came home.                                                                                                                   part in brain function.
                                                                            "You really think about those wedding vows when you have an event
Ted and Margie were then left to make the difficult life changes.           like this," said Margie.
                                                                                                                                                      According to Masel and DeWitt, research suggests that the
"It seemed like an overwhelming problem to me, that I needed two            Margie acknowledges that even through all the physical and                progression of symptoms seen in chronic traumatic brain injury
heads to figure out how to handle it, but only one of them was              psychological pain of having a stroke, all the setbacks the couple has    patients may be due, in part, to defective apoptotic cell death –
working," said Margie.                                                      endured, and all the efforts made to get life back to normal, Ted has     a natural process in which cells die because they are genetically
                                                                            continued to be optimistic.                                               programmed to do so or because of injury or disease. It is
Ted was forced to retire as an orthopedic surgeon and spend his time                                                                                  possible that the abnormal apoptotic cell death is triggered by
at rehabilitations centers, such as The Neuro-Day Rehabilitation            "He's always been upbeat, always been positive," said Margie. "It's       brain trauma, leading to an accelerated decline in cognitive
Program at Portsmouth Regional Hospital.                                    been extraordinarily helpful. He could be very upset about all his        function and development of disease.
                                                                            losses, but he always looks at the cup half full."
He and his family — his wife and two sons, Robbie and Teddy —                                                                                         “Media coverage of traumatic brain injury among soldiers and
had always lived an active lifestyle. Ted had been sailing since he         Ted believes it's important for people to educate themselves on the
                                                                                                                                                      athletes, especially football players, has highlighted the serious
was 10 and had covered more than 10,500 miles of ocean in com-              signs of a stroke, because it could make the difference between life
                                                                                                                                                      health problems resulting from brain injury that are experienced
petitions. He and his family had skied, what the Kings call the four        and death.
                                                                                                                                                      later in life and helped raise awareness among the general
A's: The Alps in Switzerland; the Appalachians in Vermont, Maine                                                                                      public,” says DeWitt.
and New Hampshire; the Andes in Chile; and the American Rock-               Ted suffered another minor stroke in 2007, this time from a blockage
ies in Colorado and Canada. Both of his sons were championship-             on the left side of his neck. He and his son, Robbie, had been in the
                                                                            kitchen discussing possible treatments for back pain. Ted kept            “But until traumatic brain injury is recognized as a chronic
winning bicyclists, and Ted and Margie had even learned how to                                                                                        disease, research funding won’t be adequate for the work that is
snowboard.                                                                  slurring the word "acupuncture" and Robbie immediately responded
                                                                            with, "Mom, isn't this when we take dad to the ER?"                       needed to help patients minimize or avoid these outcomes.”
                                        SPOTLIGHT ON KREMPELS
     AY
HEADW Newsletter                                                                                                                                                      Summer 2011 - Page 11




    KREMPELS CENTER AT OCCUPATIONAL                               White and Kresge had opportunities this year at the New               from closely examining their lifestyle allows clients to make
         THERAPY CONFERENCES                                      Hampshire Occupational Therapy Association (NHOTA) and                personalized choices about how they can best manage stress.
What comes to mind when you think of techniques for man-          the American Occupational Therapy Association Annual
aging stress? Yoga? Meditation? Tai Chi? These valuable           Conferences, where they presented a workshop and a poster,            The members of the Krempels Center are survivors of acquired
techniques and practices are all the buzz when it comes to        respectively, to challenge their colleagues’ thinking and ap-         brain injuries. Many experience immense amounts of stress as
managing stress. For many people they might be valuable.          proaches to stress management. Their challenge was very well          they work toward redefining themselves, their roles and their
However, did you ever think about skiing for managing your        received in both venues. They encouraged practitioners to look        routines. Krempels’ community program offers an ideal envi-
stress? Doing laundry? Singing?                                   closely at the occupations (meaningful activities) already em-        ronment in which to explore a variety of activities and interests
                                                                  bedded in clients’ lives and at those activities that clients iden-   and their impact on increasing or reducing stress for individual
Krempels Center Program Coordinator, Barb Kresge, OTR/L,          tified as wanting to pursue with the ultimate goal of helping         members. Through its group program, members have the
CIBS, and UNH colleague Barb Prudhomme White, Ph.D.,              clients to develop a balanced occupational stress profile. The        opportunity to engage in a wide variety of activities including
OTR/L, are trying to get folks thinking about a different, more   process begins with examining how clients spend their time;           sports, creative arts, cooking, computer activities, yoga,
personalized approach to stress management. As occupa-            which activities do they most enjoy? Which activities do they         meditation, music etc. Interns and staff from multiple
tional therapists, both Barbs are familiar with examining peo-    find draining? Which activities do they find rejuvenating?            disciplines (occupational therapy, speech therapy, therapeutic
ples’ roles and occupations and using what is important to        Some of the answers are surprising…Many people find house-            recreation, social work, psychology etc.) help members make
them to help them meet their goals. However, through their        work enjoyable and relaxing. Some find that high energy               connections about the impact of activities on each individual.
clinical experience they became concerned that stress             activities help reduce their stress. The awareness that results       The process of identifying which activities are healthy and
management was being approached in a prescriptive way.                                                                                  rejuvenating and which activities are draining and stressful can
Practitioners of many disciplines were asking people to add                                                                             ultimately help members to structure their lives for maximal
to their lives what are considered traditional stress manage-                                                                           satisfaction and functioning.
ment techniques such as yoga and meditation. While for many
people these techniques are effective, for many others they                                                                             “The Barbs” plan to continue to examine stress management
hold no meaning and are therefore ineffective. Further, adding                                                                          evaluation and intervention, recognizing that a balanced
new stress reduction techniques to one’s already busy life                                                                              occupational stress profile is essential to general life
often demands more time and resources, neither of which may                                                                             satisfaction. If you have comments or would like to join our
be available. This prescriptive approach may result in                                                                                  conversation, please contact Barb Kresge at bkresge@krem-
frustration or a sense of failure for many clients, essentially                                                                         pelscenter.org or Barb White at bpwhite@unh.edu.
increasing rather than decreasing their stress .

                                                                                                                                        Continued from page 10 - Aging with Brain Injury

    PLANNED GIVING
                                                                                                                                        A potential area for further research
                                                                  You can structure the trust to provide for both                       involves pragmatic communication
                                                                  your family and BIANH. When the trust is put                          deficits, which are fairly common
In earlier issues of HEADWAY we discussed                         in place, you decide how much you want paid                           after brain injury. The modern work-
                                                                                                                                        place is complex, and subtle relation-
“Planned Giving” and the benefits to you                          to BIANH as an annual income and also what                            ships influence the effectiveness of
and to The Brain Injury Association of New                        the final payment will be. Of course, the more                        teamwork and morale. As such, com-
Hampshire. One point not mentioned thus far,                      that goes to BIANH the larger your tax deduc-                         municative intent must be clear.
is leaving a legacy. You may already be                           tion will be. On the other hand, the smaller                          Clearly, returning to work following
                                                                  your donation to BIANH, the smaller your tax


                                                                  .
considering making a meaningful donation                                                                                                a catastrophic injury or illness is
to The Brain Injury Association of New                            deduction, and of course more will pass to                            daunting. The psychological adjustment of returning to the job is
                                                                  your family. With this strategy, you can:


                                                                  .
Hampshire, but at the same time want to                                                                                                 complex; it encompasses the social, physical and economic changes.
                                                                      Tailor the trust to meet your desires and


                                                                  .
                                                                                                                                        Those returning to work recall their preinjury roles and must now
protect and preserve your wealth for your                                                                                               adjust to reduced hours, less complex jobs and reduced rates of pay.
                                                                     those of BIANH.


                                                                  .
family. The correct planning will permit you                                                                                            The dynamic combination of physical, neurological, social, cognitive
                                                                      Receive an income tax deduction.


                                                                  .
to do both. You can establish a Meaningful                                                                                              and behavioral forces may be insurmountable without accommodation
Legacy that will share your financial success                         Maximize your legacy for BIANH.                                   and support for those with severe disabilities.
with your loved ones and The Brain Injury                             Pass on wealth to future generations.                             Post acute rehabilitation treatment effectiveness studies have demonstrated
Association of NewHampshire. Legacy plan-                            Life insurance comes in all different shapes                       the negative relationship between disability and long-term job maintenance.
ning can efficiently and effectively transfer                        and sizes. It is not the intent of this article                    The more severe the disability, the greater the probability of under em-
your wealth to the next generation and also                          to get into different types of life insurance,                     ployment and unemployment. However, there is a small but significant
replace the gift that you make to The Brain                          that work best for you in your individual                          number of people aging with TBI who have returned to work and main-
                                                                                                                                        tained their jobs, many with the accommodations and residual vocational
Injury Association of New Hampshire.                                 situation.                                                         and cognitive skills noted above. While the literature reveals serious
This can be accomplished by using a Charita-                                                                                            vocational problems facing people with TBI and their families, it also
ble Lead Annuity Trust. This type of trust pro-                   Roger Cote, CLU, ChFC Registered Repre-                               indicates societal responsibilities to make accommodations. The American
vides an annual income to BIANH followed                          sentative of and Securities offered through                           Disabilities with Act (ADA) is an acknowledgement and incentive for

by a large final payment to both BIANH and                        Sigma Financial Corporation Member                                    employers to make reasonable accommodations. The research outcomes



.
                                                                                                                                        demonstrate the need to move beyond prediction to effective vocational
your family. To fully take advantage of your                      FINRA/SIPC                                                            rehabilitation in the areas of job, social and cognitive skills necessary to
charitable gift, a Life insurance policy                                                                                                maintain worthwhile employment and contribute to the personal dignity of
    is used within the Charitable Lead Trust.                                                                                           people aging with a brain injury.
                                          SPOTLIGHT ON KREMPELS
     AY
HEADW Newsletter                                                                                                                                                    Summer 2011 - Page 12




                                                                    Categorization                                                        doubt the accuracy of pain related disability reports (particu-
                                                                                                                                          larly with persons who had some potential secondary gain fac-
                                                                    The major types of headaches seen following trauma include:
                                                                                                                                          tor(s) in place such as a personal injury, worker’s compensation
                                                                    musculoskeletal headache (including direct cranial trauma,
                                                                                                                                          or disability claim) due to PTHA. Conversely, secondary gain
                                                                    cervicogenic headache and TMJ disorders), neuromatous and
                                                                                                                                          may also apply to patients with PTHA underreporting their
                                                                    neuralgic (nerve) headache, tension type headache, migraine,
                                                                                                                                          symptoms e.g. the football player who wants to go back in the
                                                                    as well as more uncommon causes of headache including
                                                                                                                                          game or the soldier who wants to return to his unit).
                                                                    dysautonomic headaches, seizures, pneumocephalus (air in the
                                                                    head), cluster and paroxysmal hemicrania, post-traumatic sinus
                                                                                                                                          Studies have demonstrated that ongoing litigation has little to
                                                                    infections, drug induced headache, medication overuse
                                                                                                                                          no effect on the persistence of headache complaints. Specifi-
                                                                    headache (previously called rebound headache) and the surgi-
Introduction                                                        cal conditions previously mentioned. The most common cause
                                                                                                                                          cally, studies have shown that patients still continue to report
                                                                                                                                          significant symptoms even after litigation has ended (Note: the
Headache and neck pain are the most common physical                 of PTHA in this clinician’s extensive experience is cervico-
complaints following concussion (mild brain injury) and are                                                                               work in this area is limited and further research to confirm the
                                                                    genic headache which may have several different possible
experienced early after injury by up to 70% of persons with                                                                               findings of prior studies is recommended). A small number of
                                                                    causes. Referred cervical myofascial pain as a consequence
these types of injuries. Headache also occurs after more                                                                                  patients will develop intractable severe post-traumatic
                                                                    of cervical acceleration-deceleration insult (i.e. whiplash) is
severe brain injury; however, for some reason, as yet uniden-                                                                             headache; however, this group of patients has been poorly
                                                                    a particularly common explanation for this condition,
tified, it tends to be a much less common phenomena in this                                                                               studied and the influence of non-organic and/or psychogenic
                                                                    particularly when there is involvement of proximal aspects of
group of patients when compared with the incidence following                                                                              factors in such patients remains unclear.
                                                                    cervical or associated musculature….such as trigger points in
mild traumatic brain injury. This suggests that the TBI itself is   the sub-occipital musculature or proximal portions of the             When properly diagnosed and treated, most PTHA is able to
probably not the primary cause because it would logically fol-      sternocleidomastoid and/or upper trapezius muscles.                   be modulated or cured and will not likely be disabling over the
low that if it was one would expect more headache problems
with more severe TBI. Headache is also a common problem             Etiology                                                              long term. PTHA prognosis must be based on an exact under-
                                                                                                                                          standing of headache etiology (based on history and focused
after cranial trauma, as well as spinal whiplash injuries.          There are multiple sources of head and neck pain, both inside
                                                                                                                                          examination, overlay as relevant of psychogenic (including
                                                                    and outside of the head. The brain itself, interestingly, is not a
Often, injured persons will seek medical care following                                                                                   patient characterological issues) and secondary gain factors,
                                                                    source of pain. Headache typically results from six major
traumatic injuries only to be diagnosed with “post-traumatic                                                                              response to appropriate historical treatment and consideration
                                                                    physiologic phenomena:
headache” (PTHA). Such a non-specific diagnosis without                                                                                   of whether the correct treatment for the pain generator was ever
                                                                    • Displacement of intracranial (within the skull) structures.
elaboration as to pain generator etiologies leaves treaters and                                                                           instituted at all.
                                                                    • Inflammation.
others (including patients and their families) with no real         • Ischemia (decreased blood flow) and/or metabolic changes.           Evaluation
information regarding the true etiology of the headache             • Myodystonia (increased muscle tone).                                All too often, patients are simply given a diagnosis of post-
disorder, its prognosis, or the appropriate treatment regimen       • Meningeal irritation (inflammation/irritation of the thin           traumatic headache (PTHA) and no further elaboration is made
that should be administered to modulate or ideally cure the           layers of tissue “coating” the brain).                              relative to the problem causing the pain. Often PTHA is incor-
headache.                                                           • Increased or decreased intracranial pressure.                       rectly labeled and treated as migraine headache because no one
Although the majority of headache following mild brain              Natural History, Prognostic Factors and                               bothers to adequately obtain a history of headache symptoms
injury is most likely benign relative to the fact that these        Outcome                                                               and/or conduct an appropriately focused examination that
                                                                                                                                          considers injury mechanisms and/or headache symptoms. The
conditions do not require surgical treatment, there are, on         There are inadequate evidence based studies to stipulate
occasion, complications that occur, as is more commonly seen                                                                              examining clinician must keep in mind the different mecha-
                                                                    dogmatically the natural history, prognostic factors and out-
with more severe brain injury and associated headache, that                                                                               nisms of PTHA. Additionally, the mechanism of injury
                                                                    comes of PTHA, in part, because PTHA is not one single
may require surgical intervention. Subdural and epidural                                                                                  responsible for the initial insult should also be investigated
                                                                    pathophysiological disorder but rather a symptom descriptor
hematomas (blood collecting between the brain and the skull),                                                                             (i.e. high speed MVA, fall, or assault as the most common
                                                                    that may involve multiple pain generators. Additionally, there
carotid cavernous fistulas (abnormal communication between                                                                                mechanisms). Risk factors for three main phenomena that are
                                                                    are major methodological flaws in the existing literature
the venous blood flow and arterial blood flow), traumatic                                                                                 typically associated with PTHA should be inquired about
                                                                    relative to lack of prospective, controlled and blinded studies in
carotid artery dissection, cavernous sinus thrombosis, as well                                                                            including brain injury, cranial or cranial/adnexal trauma
                                                                    this patient population. There are also multiple methodological
as post-traumatic intracranial pressure (ICP) abnormalities                                                                               (damage to the head or structures in the head but outside the
                                                                    challenges in studying an impairment that is predominantly
(high versus low ICP), among other conditions can all be                                                                                  brain) and/or cervical acceleration/deceleration (CAD) insult
                                                                    based on subjective patient report including issues of misattri-
responsible for PTHA and bring with them a potential need                                                                                 (also called whiplash injury).
                                                                    bution bias, recall bias, and potential response bias regarding
for surgical intervention.                                          pain reporting, among other issues.                                   There is also a growing literature on blast related headache in
The experienced clinician should be able to determine the un-                                                                             returning military personnel that accounts for a significant level
                                                                    Any study of chronic PTHA must also address the inherent co-
derlying cause for the PTHA with appropriate time taken to                                                                                of post-conflict morbidity; however, the literature to date has
                                                                    morbidities of the psychological and medical effects of chronic
acquire an adequate pre-injury, injury and post-injury history,                                                                           been limited and without concurrent comprehensive
                                                                    pain (and stress) on not only the patient’s reporting of their pain
as well as conduct a careful physical evaluation and appropri-                                                                            assessments including physical examinations and/or pain
                                                                    but also on a myriad of other aspects of function including
ate diagnostic testing. Treatment should be instituted in a                                                                               response bias testing. Blast related injury may be primary
                                                                    cognition, behavior and sleep. The majority of the studies to
holistic fashion with a goal of maximizing the benefit/risk ratio                                                                         (direct injury from pressure wave), secondary (due to injury
                                                                    date have not based conclusions on comprehensive physical
of any particular intervention, prescribing treatment that can be                                                                         from projectile elements), tertiary (due to effect of trauma
                                                                    assessments that integrate neurological and musculoskeletal
optimally complied with and educating the patient and family                                                                              from being thrown into other objects) or quaternary (from
                                                                    assessment and/or additionally link specific exam findings with
regarding the condition, its treatment and prognosis. Late onset                                                                          precipitation of explosion-related illnesses or diseases).
                                                                    current headache classification systems (the latter which have
headaches (i.e. greater than 6 months post-trauma) should cue       been criticized relative to their lack of applicability and           One of the major clues as to the cause of PTHA should be the
the treating clinician to think of less common injury related       relevance to this particular population).                             symptom profile for that particular headache condition. Clini-
conditions such as seizures or tension pneumocephalus as a                                                                                cians must therefore have a very good grasp on the manner in
cause for the headache disorder or just as likely a non-injury      Studies to date have also, almost exclusively, not used pain
                                                                                                                                          which different post-traumatic headache disorders present from
related cause such as a space occupying lesion (i.e. brain          validity or response bias measures of any kind to assess the
                                                                                                                                          a symptomatic standpoint. Not infrequently, there is more than
tumor), among other conditions.                                     accuracy of pain reporting which would significantly leave in
                                                                                                                                                                            Continued on page 14
                                ? ? ? ? ASK JON ? ? ? ?
     AY
HEADW Newsletter                                                                                                                               Summer 2011 - Page 13



                                                        by Jonathan Lanteigne
Dear Jon,
Sometimes when I hear the word “normal” I wonder what it really means. I have a brain injury and I try to be like my friends whenever I
hang out with them, but sometimes it doesn’t work out and I hear them say, “don’t mind him, he has a hard time acting normal.” So my
question to you is: “What is normal?”        – Argyle
Dear Argyle,
Thank you for your question. There are many facts about this word, all of which can have different ways for people to help handle
and overcome any challenges. According to the dictionary, “normal” is defined as an adjective meaning usual, typical, and
expected.1 As for the thesaurus, it provides “normal” with the synonyms ordinary, typical, routine, orderly, and methodically. 2
After reading the following, you will have the concise ability to both understand and contemplate over the word “normal.”
Always be aware of how and why “normal” is being used. Examples include a company listing a “normal” size coffee on their menu, a temperature of 98.6°F is
declared as “normal” give or take a few degrees, and the “normal” price of gasoline will change, as it is always at an unfixed rate due to supply-and-demand.
Hence, you should always expect to see the word “normal” used in many different ways.
For protocols that never change, there will always be “normal” actions to be followed. “You cannot change the spots on a snow leopard.” Have you ever heard of
this expression? Some things just come as they are and must stay as they are. Nowadays, there are protocols to be followed for many different computer functions –
should it malfunction, it will be “abnormal” and will not meet its user’s satisfactions and expectations. Technology is an ever-changing and upgrading science, thus
there will never be a “normal” function expected to be operated by all computers.
Almost everyone prefers to use the word “normal” when comparing one thing to another. In the electronics or automobile industry, measuring tolerance against
known standards will ensure “normal” operation. However “normal” operation does not apply to people; humans do not operate within certain tolerances. What
does that mean to me? There are no such things as “global norming”; we are all different and, in my opinion, “normal” (in the normal sense) does not apply to
mankind.
“Norms” can change from place-to-place and between different locations. It is a good idea to acknowledge the acceptable norms of where you are. For instance, a
town can have a “normal” speed limit unless otherwise posted, a state can have “normal” minimum and maximum highway speed limits, and a country can have a
set of speed limits to travel through a highway toll booth such as the E-ZPass so that it can successfully read while you travel through the toll. Even if you have a
Brain Injury Survivor Card, always know it will not overrule your decision to drive above the “normal” speed limit accepted by the location you are in.
As for me, I have personal experiences when it comes to the word “normal.” One example occurred when I was speaking with a friend discussing my brain injury.
All of a sudden, somebody confronted me exclaiming, “My son has a brain injury! How dare you speak of brain injury challenges!” I informed her of my brain
injury, showed her my Brain Injury Survivor Card, and asked her, “Do you know of my ‘Ask Jon’ advice column in the BIANH HEADWAY newsletter?” She said,
“Yes. Now that I know who you are, I am more understanding.” This just shows firsthand that I appear “normal” to someone because there is absolutely nothing
physical about my appearance that reveals that I have a disability: a brain injury.
A second example of mine is having the need to use a binder while at work. It is an excellent tool that my first manager and I both agreed would be helpful for me to
use on the job. This binder helps me perform my job responsibilities and tasks effectively and it does not take away from how I perform my job duties. However,
several managers later, I had a new manager who took that tool (job accommodation) away from me. The new manager said, “That’s not ‘normal’ to use; if you use
it, it will get in the way of work.” That manager was not understanding of my disability, so then I contacted a Human Resources Manager at the corporate office to
get this job accommodation approved. It was. Now my job can be performed “normally.”
I take normal is for what normal does. Before I had my brain injury, I was athletic, had many friends, and learning was very easy for me. After I was released from
the hospital, my coordination was affected. Most of my friends noticed that I was not the same as I was prior to when I had my brain injury and would no longer
interact with me; learning became very difficult. I would often perseverate on why I was not normal. But eventually I learned how to adapt to my new learning style,
maintain friends, and so on.
In conclusion, the question of, “What is normal?” can often come up when communicating and interacting with others. After a brain injury, one may have to perform
actions in a new “normal” sort of way. Memorizing what is accepted as behaving “normal” to society’s standards can be a challenge for a Brain Injury survivor.
Despite being provided with the definition and synonyms stated above, I conclude the word “normal” to be truly nothing but “lamron” spelled backwards. Now that
you have read my answer to your question, I hope you now understand and contemplate that the word “normal” can mean an indefinite variety of different things and
cannot actually be precisely described.
1 Soanes, Catherine. The Oxford Dictionary of Current English. 3rd ed. Oxford: Oxford UP, 2001. 610. Print.
2 Laird, Charlton. Webster's New World Thesaurus. 3rd ed. New York: Pocket, 2003. 290. Print.
  Do you have a question for Jon? Send it to the Brain Injury Association of New Hampshire, Attention: Newsletter Editor, 109 North State Street, Suite 2, Concord, NH 03301 or
                           email it to renee@bianh.org. Due to the popularity of this feature, we cannot guarantee that all letters will receive a response.

            BIANH can now be found on Twitter!                                                           If you have questions regarding brain injury,
                                                                                             benefits, and/or programs, please call our office (603-225-8400) and
  Simply go to Twitter.com and sign in under BrainInjuryNH.                                     speak to Barbara at extension 304, or Peggy at extension 310.
     AY
HEADW Newsletter                                                                                                                                                   Summer 2011 - Page 14

Continued from page 12- Spotlight on Krempels                                                         Education of the patient with PTHA is crucial to optimizing treatment success, as well as
one type of PTHA pain generator present. For example, most patients with PTHA who have                decreasing distress and poor adaptation to pain, particularly when chronic. One of the most
tension or migraine headaches typically have cervicogenic contributors and most patients with         important pieces of education is making sure the patient understands their disease process and
TMJD typically also have cervical involvement. A patient’s pre-injury headache history as well        the expectations of treatment which may not necessarily be curing the headache but modulating
as their family headache history (e.g. relative to genetic loading risk for PTHA) is also very        it and optimizing general function. Another very important area of intervention is to make sure
relevant in the context of understanding any PTHA disorder. Just because an individual had            that the patient and their support system understands how to administer any prescribed treat-
headache pre-injury does not mean that he or she could not develop a different type of headache       ments including medication and the potential detrimental effects of non-compliance such as
or a worsening of the pre-injury condition following trauma. The major questions relative to          delay of recovery, non-optimization of pain control, and medication overuse headache, as a few
the headache profile that need to be asked are expressed in the mnemonic “COLDER”: Char-              examples. Pain associated with PTHA can interfere with thinking in terms of decreased
acter, Onset, Location, Duration, Exacerbation, and Relief. Other important areas to inquire          attention and concentration with perceived memory problems. Such interference can often
about include the frequency, severity, associated symptoms (including the presence/absence of         produce false positive diagnoses of mild TBI in persons following cranial or cervical trauma
aura), degree of functional disability associated with headache episodes, the time of day that        with significant PTHA related pain and/or aggravate cognitive issues due to real post-TBI
headaches start and/or are worse, headache relationship with stress and/or menses, as well as         neurocognitive dysfunction. Pain can also disrupt sleep, behavior (i.e. predominantly
seasonal variations are all important parameters to inquire about.                                    manifesting as irritability, depression and/or anxiety), as well as promulgate symptoms of
                                                                                                      post-traumatic stress disorder (PTSD).
Adequate physical examination is paramount to an appropriate diagnosis and should include
inspection, palpation, auscultation and percussion as appropriate. The neurological exam
should be a centerpiece of this assessment, however, adequate examination of cranial and
                                                                                                      Conclusions
                                                                                                      PTHA is ultimately a symptom and not a diagnosis. This complex disorder has multiple
cervical (i.e. neck) structures including inspection, percussion and palpation of the head, neck      potential causes and as a result has multiple potential ways to address the pain that is associated
and shoulders, as appropriate, is a crucial yet often overlooked aspect of a complete exam for        withthe underlying pain generators. Assessing and treating PTHA is a process that requires
PTHA. Anecdotally, I would note that about 90% of the tertiary referrals this clinician has           adequate time commitment and knowledge by the treating clinician...some will consider this “a
seen over the last 25 years report that no one had ever palpated their neck or head.                  pain” and if that is the case, then those clinicians should defer treatment to others who make it
Treatment                                                                                             their business to assess and treat these types of patients. Pejorative and potentially self-
PTHA does not occur in a vacuum. Rather, it occurs in a biological system within specific             prophesising labels such as “chronic PTHA” are often a misnomer due to the fact that the actual
psychological and social contexts. PTHA reflects an interaction of organic and emotional fac-         pain generators were never diagnosed correctly in the first place. Ideally, such labels should be
tors. Treatment decisions need to be made with an understanding of the differences between            avoided. There is in fact hope for those with PTHA regardless of how long they have suffered
managing acute new onset PTHA versus chronic PTHA. In the acute setting, pharmacologi-                from pain. The challenge is finding clinicians who understand the disorder and have experience
cal and physical modalities generally are the prime interventions considered and appropriate.         in holistic assessment and treatment of post-trauma patients including those with TBI, cranial
In the chronic setting, mental health assessment is paramount and when not included will often        trauma and whiplash injuries.
lead to sub-optimal clinical outcomes regardless of how “appropriately” the patient is other-
wise managed. Unsophisticated medication management may lead to unwanted side effects
(e.g., adverse effects on sleep, cognition, behavior, sexual functioning and/or work perform-
ance) and inadequate pain control; however, appropriate medication management can go a
long way in modulating PTHA symptoms. There are now multiple different pharmacological
                                                                                                                  Quality of Life…
approaches to the various types of PTHA that the treating physician must consider including                          for adults with a brain injury
enteral, intravenous, sublingual, transdermal, compounded and rectal formulations of
medications. Physical interventions that are misdirected including physical therapy may                                               Supported Residential Programs
augment costs for the payor but do nothing for ameliorating PTHA related pain and disability.
                                                                                                                                  I
                                                                                                                                  I   Residential Rehabilitation Programs
Physical treatments may include various manual therapies including osteopathic, chiropractic,
                                                                                                                                  I   Supported Apartment Programs
physical therapy and craniosacral therapies. Additional physical treatments may encompass
                                                                                                                                  I   24 Hour Staffing for All Programs
Interventional pain procedures such as nerve blocks, trigger point injections, acupuncture, facet
blocks, and on rare occasion surgery, among a myriad of available techniques. Treatment in the
“right hands” is crucial with these types of patients ….a fact often not appreciated by clinicians
and payers not experienced and well acquainted with this post-traumatic disorder.
PTHA patients have been reported to exhibit minimal response to psychological or physical
treatments when utilized in a non-holistic fashion. Treatments that target not only the pain
generator(s), but also the patient’s reaction to pain within their daily life (and their adaptation
to it) typically fare better thantreatments with a more narrow focus. Understanding vulnera-
bility issues as predictors of poor chronic pain adaptation is also critical in this context.
Currently, multicomponent treatment packages are the preferred treatment choice for PTH.
For those interested in more detailed discussions of PTHA treatment options please refer to the
attached recommended readings.

Neuropsychology of Post-Traumatic Headache
Persons with chronic pain commonly develop emotional difficulties such as depression and/or
anxiety which may further increase their perception of their pain and their subjective level of
distress, as well as stress. Many times referral to a psychologist or pain specialist may be
indicated to help the person with the headache condition learn to deal better with their pain.
Biofeedback, stress management, cognitive-behavioral therapies, pain adaptation and/or
disability counseling and pain cope groups, among a variety of possible interventions, do help
                                                                                                                                              Es                           3
many patients with headache including those without evidence of gross psychological
                                                                                                                                                   tabl
                                                                                                                                                          i s h e d 19 8

problems. Such interventions should be provided by persons adept at chronic pain manage-
ment, as well as, familiar with issues germane to working with persons with TBI and their
                                                                                                                                      www.robinhillfarm.com

families.
                                                                                                                       55 Donovan Road, P.O. Box 1067, Hillsborough, NH 03244
                                                                                                                               Tel: 603-464-3841 Fax: 603-464-3851
                                                                                                                                  e-mail: info@robinhillfarm.com
                 SUPPORT GROUPS IN NEW HAMPSHIRE
     AY
HEADW Newsletter                                                                                                                                            Summer 2011 - Page 15




      (Times and places may change without notice – please call in advance)                      Peterborough: 1st Tuesday of the month, 6:00pm-8:00pm, Monadnock Community Hospital,
                             Revised May 25, 2011                                                452 Old Street Road, Peterborough, NH
                                                                                                 Contact: Tom Badgley
Aphasia:                                                                                         Phone: (603) 588-2979
                                                                                                 Co-Facilitator: John Richards
Seacoast: Aphasia Support Group, 3rd Monday of the month, Community Campus, 100 Com-             Phone: (603) 271-6895
munity Campus Drive, Portsmouth, NH
Contact: Dave or Rosemarie                                                                       Rochester: 2nd Thursday of the month, 6:00pm at Frisbee Memorial Hospital, Rochester, NH
Phone: (603) 659-6161                                                                            Contact: Paula Dempsey
                                                                                                 Phone: (603) 539-8718
Brain Injury:                                                                                    Co-Facilitator: Doug DuFresne
                                                                                                 Phone: (603) 332-9435
Claremont: 4th Tuesday of the month, 6:00pm, Valley Regional Hospital, 243 Elm Street,
Claremont, NH                                                                                    Salem: 1st Wednesday of the month, 5:00pm-6:00pm, Northeast Rehab Hospital, Administrative
Contact: Kendra Yakovleff                                                                        Conf. Room, Salem, NH
Phone: (603) 558-2123                                                                            Contact: Jessica Anderson
                                                                                                 Phone: (603) 893-2900 x3218
Concord: 3rd Tuesday of the month, 6:30pm-8:00pm, Granite State Independent Living,
21 Chenell Drive, Concord, NH                                                                    Seacoast: 1st Tuesday of the month, 7:00pm, North Hampton United Church of Christ, North
Contact: Jan Perkins                                                                             Hampton, NH
Phone: (603) 568-6021                                                                            Contact: Lil Charron
Co-Facilitator: Pat Winski                                                                       Phone: (603) 659-5769
Phone: (603) 463-3035                                                                            Co-Facilitator: Rosalie Johnson
                                                                                                 Phone: (603) 749-1825
Conway: 1st Wednesday of the month, 6:00pm-7:30pm, Northern Human Services, Center Con-
way, NH                                                                                          Upper Valley: 2nd Wednesday of the month, 6:30pm, Dartmouth Hitchcock Medical Center,
Contact: Freddi Gale                                                                             Fuller Board Room, Lebanon, NH
Phone: (603) 356-0282                                                                            Contact: Mary Sue Turner
Contact: Chris Dearborn                                                                          Phone: (603) 650-5978
Phone: (800) 424-7153 x 367                                                                      Co-Facilitator: Sharon Morgan
                                                                                                 Phone: (603) 635-6112
Derry: 2nd Friday of the month, 6:30pm, Nutfield Building, Parkland Hospital, 44 Birch Street,
Derry, NH                                                                                        Mild Brain Injury Support Group:
Contact: Cathy Rudd
Phone: (603) 458-5648                                                                            Salem: 2nd Wednesday of the month, 5:00pm-6:00pm, Northeast Rehab Hospital, Reception will
                                                                                                 direct you to the room, Salem, NH
Franklin: 1st Wednesday of the month, 6:15pm-7:30pm, Genesis Mountain Ridge Center, 7            Contact: Barbara Capobianco
Baldwin Street, Franklin, NH                                                                     Phone: (603) 893-2900 x3218
Contact: Karen Burke-Troon
Phone: (603) 783-0444                                                                            Brain Tumor:
Gorham: Northern Woods BI Support Group, 3rd Tuesday of the month, 7:00pm – 8:00pm,              Derry: 2nd Monday of the month, 5:30pm-7:00pm, Derry Public Library, Paul Collette Conf
Gorham Resource Center, 123 Main Street, 2nd Floor, Gorham, NH                                   Room A, Derry, NH
Contact: Kim Tardiff                                                                             Contact: Urszula Mansur
Phone: (603) 326-3237 or (603) 723-4226                                                          Phone: (603) 425-2822
Co-Facilitator: Tiffani Arsenault
Phone: (603) 723-1095
                                                                                                 Stroke:
Keene: Monadnock Pacers 4th Tuesday of the month, 6:00pm-7:30pm – DHMC, 580 Court St.,
Keene, NH                                                                                        Lebanon: 1st Tuesday of the month, 10:30am-11:30am, Dartmouth Hitchcock Medical Center,
Contact: Cindy Carney                                                                            1 Medical Center Drive, Lebanon, NH
Phone: (603) 352-6556                                                                            Contact: Jane Stephenson
Co-Facilitator: Sandy Forest                                                                     Phone: (603) 650-5789
Phone: (603) 355-9970
                                                                                                 Manchester: 4th Wednesday of the month, 1:15-2:30pm, Easter Seals, 555 Auburn Street,
Lakes Region: 3rd Thursday usually every other month, 7:00pm, Lakes Region General Hospi-        Manchester, NH
tal, 80 Highland Street, Laconia, NH. Call for upcoming dates.                                   Contact: 1-800-870-8728
Contact: Helen Robinson
Phone: (603) 279-3926 or in summer call (603) 744-2240                                           Nashua: 2nd Wednesday of the month, 6:00pm-7:30pm, 4 South dinning room, St. Joseph Hospi-
                                                                                                 tal, 172 Kinsley Street, Nashua, NH
Littleton: 2nd Wednesday of the month, 6:00pm-7:30pm, Ammonoosuc Community Health                Contact: Karen Shaw
Services, 25 Mount Eustis Road, Littleton, NH                                                    Phone: (603) 882-3000
Co-Facilitator: Steve Noyes
Phone: (603) 444-5930/2464                                                                       Salem: 1st Wednesday of the month, Northeast Rehab Hospital, Family Conf. Room, 70 Butler
                                                                                                 Street, Salem, NH
Manchester: Greater Manchester Brain Injury and Stroke Support Group; 2nd Tuesday of the         Contact: Jessica Anderson
month, 6:00pm-7:30pm, Catholic Medical Center, Rehab Medicine Unit F200, 100 McGregor            Phone: (603) 893-2900 x3218
Street, Manchester, NH
Contact: Bob Vieira                                                                              Salem: 1st Saturday of the month, Northeast Rehab Hospital, T-R Department, 70 Butler Street,
Phone: (603) 663-6662                                                                            Salem, NH
Co-Facilitator: Gail Sederquest                                                                  Contact: Kim Errico
Phone: (603) 568-2693                                                                            Phone: (603) 893-2900 ext. 469

Nashua: 1st Wednesday of the month, 6:00pm, St. Joseph Hospital (4th floor), Nashua, NH          Caregivers:
Contact: Patti Motyka
Phone: (603) 595-3175                                                                            Portsmouth: Every Wednesday, 10:00am-11:00am, Community Campus, 100 Campus Drive,
                                                                                                 Portsmouth, NH
                                                                                                 Contact: Lisa Hanson
                                                                                                 Phone: (603) 433-9821
     AY
HEADW Newsletter                                                                                                            Summer 2011 - Page 16

 MEMBERS & DONORS
                                                             IN MEMORY OF JUNE HOLLAND                    IN HONOR OF CURTIS HAYES
                                                             Mary J. Holland                              Ellen Hayes
Thank you to all our members and donors!                     IN MEMORY OF CAROLYN SMITH                   IN HONOR OF DOUG LEARY
 (This list reflects donations received from December 2010   Carol Aldrich
                      through June 1, 2011)
                                                             Canterbury Elementary School                 Debra Holden
DONORS AND MEMBERS                                           Dale & Susan Caswell
Abramson, Brown and Dugan                                    Donald Eckhardt                              IN HONOR OF JOHN RICHARDS
Diane Aubrey                                                 William & Ingrid Izzi
                                                             Paul & Celeste Leveillee                     Nancy Richards
Barbara Badger
Henry (Tom) Badgley                                          Robert & Mary Jo Reed
Cynthia Bailey                                                                                            IN HONOR OF JASON SCHRECK
Rhonda Barkley                                               IN MEMORY OF SEAN TEASE
                                                             Marie Magee                                  The Hynes Family Fund & Ayco Charitable
Francis Brown
Sue Champagne                                                                                               Foundation
Chevron Humankind/Richard Hawkins                            IN HONOR OF BILLY CLEMENT
Community Bridges                                            Lee & Paula Bernard
                                                                                                          IN HONOR OF RON SNOW
Kevin Scott Dalrymple Foundation
FairPoint Communications                                     IN HONOR OF MATTHEW COLLINS                  Mr. I. John Cholnoky
Gayle Feick                                                   Robin Darling
Ann Fitzgerald
Rosemary Garretson
Gateways Community Services
Terry Gesel
Scott & Jackie Gessis
Lesley Hampton
Curtis Hermann
Mary Holmes                                                              __ Yes! I want to help support brain injury programs and services
Independent Services Network, Inc.                                                         in the State of New Hampshire
David A. Jenkins
Judith Layton
Wilson Leach, Aviation International News
Cathy Lemire
Kevin Leonard
Daniel and Maureen Long
Dave Madden
William & Jean Manning
Peter McElroy
Harold & Dolores McMillen
Pamela Nation
Richard & Glenna Nelson
Polycom, Inc.
Ralph Porfido
John and Carol Richards
Kevin and Lynda Swenson
Pam Thomas
Paul & Peggy Van Blarigan
Wal-Mart Foundation
Wal-Mart Private Fleet, Raymond, NH
Christen Wilber
Theresa Zeludancz
Stanley Zube
IN MEMORY OF TYLER COFFEY
Jay & Laurie Coffey
IN MEMORY OF MICHAEL CUNNINGHAM
Robert Gallagher
Norman Michaud
IN MEMORY OF ROBERT R. GADSBY
Butenhof & Bomster, PC
Mattie Gadsby
Brenda Head
Lambert Funeral Home
JP & AM McCallion
Paul & Margaret Tarantino

				
DOCUMENT INFO
Shared By:
Categories:
Tags:
Stats:
views:75
posted:4/22/2012
language:Latin
pages:16