July, August, September 2014 - Alamo Head Injury Association

MINDMATTERS
July, August, September
UPCOMING MEETINGS AND EVENTS
All meetings are held on the fourth Wednesday of each month
from 6:00 – 8:00 p.m.
This quarter, meetings will be at
RIOSA HealthSouth
9119 Cinnamon Hill Dr., San Antonio
July 23
6:00 PM to 8:00 PM HealthSouth RIOSA
Family members: Liz Bilderbach from HealthSouth RIOSA will be facilitating a discussion session for family members.
Survivors: To be determined
August 27
6:00PM to 8:00 PM
Inside this issue:
Book Review
2
The “Try Harder” Myth
3
Brain Implants & Memory
4
Tweet your reminders!
5
Windows OS Accessibility
6
Blast Trauma & Pituitary
7
TBI & Finances
8
Map to new meeting location
9
HealthSouth RIOSA
Family members: Liz Bilderbach from HealthSouth RIOSA will be facilitating a discussion session for family members.
Survivors: To be determined
September 24
“Improving the Quality of Life for
Survivors of Brain Injury and their
Families”
6:00PM to 8:00 PM
HealthSouth RIOSA
Family members: Liz Bilderbach from HealthSouth RIOSA will be facilitating a discussion session for family members.
Survivors: To be determined
Please note that the meetings and programs of the Alamo Head Injury Association
(AHIA) are open to members, non members, guests, visitors and anyone desiring to
provide or receive information and/or support.
In our monthly meetings, we
strive to provide speakers
and programs that are informative and will benefit our
members and survivors in
some way.
However, if you have come
to our meeting seeking
personal support or guidance and would prefer to
speak with someone one on
one, please let us know.
There will always be someone available to talk with
you.
MINDMATTERS
Looking for a Good Book to Read?
Self-Compassion by Kristin Neff, Ph. D.
The relentless search for high self-esteem has become a virtual religion; and a tyrannical
one at that. Our competitive culture tells us we need to be special and above average to
feel good about ourselves, but we can't all be above average at the same time. There is
always someone richer, more attractive, or successful than we are. And even when we do
manage to feel self-esteem for one golden moment, we can't hold on to it. Our sense of
self-worth bounces around like a ping-pong ball, rising and falling in lock-step with our
latest success or failure.
Fortunately, there is an alternative to self-esteem that many psychologists believe is a
better and more effective path to happiness: self-compassion. The research of Dr. Kristin
Neff and others strongly suggests that people who are more self-compassionate lead
healthier, more productive lives than those who are self-critical. And the feelings of security and self-worth provided by self-compassion are highly stable. Self-compassion steps
in precisely when we fall down, allowing us to get up and try again.
Dr. Neff helps readers understand that compassion isn't only something that we should
apply to others. Just as we'd have compassion for a good friend who was going through a
hard time or felt inadequate in some way, why not for ourselves? Many people believe
that they need to be self-critical to motivate themselves, but in fact they just end up feeling anxious, incompetent and depressed. Dr. Neff's research shows that far from encouraging self-indulgence, self-compassion helps us to see ourselves clearly and make needed
changes because we care about ourselves and want to reach our full potential.
This groundbreaking book shows readers how to let go of their constant, debilitating selfjudgment and finally learn to be kind to themselves. Using solid empirical research, personal stories, humor, and dozens of practical exercises, Dr. Neff—the world's leading experts on self-compassion—shows readers how to heal the wounds of the past so that
they can be healthier, happier and more effective. Entertaining, highly readable and eminently accessible, this book has the power to change your life.
From www.self-compassion.org
WOULD YOU LIKE TO SHARE YOUR STORY?
If any survivor or family member would like to share their own personal story about
the life changing experience of living with brain injury, please send it to the AHIA at :
2203 Babcock,
San Antonio, TX
or email it to:
[email protected]
Page 2
July, August, September
After Brain Injury: The Myth of “Try Harder”
Posted April 3, 2013 by Barbara Stahura in Journal After Brain Injury
How often have you heard, “If only you would try harder….” after your brain injury? Have you said it to yourself? Or to another
person with a brain injury? If you’re a family caregiver, what do you say to those who say it to your loved one? (Or have you said
it? I said it to my husband, early on after his TBI, not yet understanding the reality of brain injury.)
This poignant poem comes from David Grant, my long-distance friend, colleague, and writer for Brain Injury Journey – Hope,
Help, Healing. He sustained a traumatic brain injury some years ago, and has become a true inspiration to many fellow travelers, especially through his Facebook page, TBI Hope & Inspiration. Thanks, David!
Have a look at David’s poem and then choose one or
two of the journaling prompts below to explore your
views on “try harder.”
Maybe things can be different if I TRY HARDER
by David Grant
If I try harder…
to be the old me, maybe many of the friends I have lost
since my TBI will come back. Maybe.
The reality is that there is no “trying harder” living life
with a TBI. The solution might just be to “try differently.”
Many things that worked in my life before brain injury
have quietly slipped away. Such is the nature of living
with an unseen disability.
The reality is that I cannot try harder. I’ve given all that I
have, and more, in my ongoing struggle to regain a foothold on my life.I will be trying “differently” for a while.
Trying harder? Just another TBI Myth.
If I try harder…
to remember what I just said, perhaps people will have a If you’re ready to do some private writing in your journal,
bit more patience with me because I repeat myself a lot. choose one or more of these prompts to get started. Do
your best to write for at least five minutes, and I encourIf I try harder…
age you to write for 20 minutes if you’re able. Rememto not be so “different,” maybe my children will come
ber, though, if the topic feels too uncomfortable or scary,
back into my life. Maybe. They are the biggest unforedon’t force yourself to write.
seen casualty in all this. My soul aches for their loss.
There is more to your life than brain injury, so try one of
If I try harder…
these prompts to explore other areas:
to remember what I just said, perhaps people will have a • I’m already trying my hardest and…
bit more patience with me because I repeat myself a lot. • If I try any harder, I’ll…
• I’ve found that trying harder….
If I try harder…
• When someone tells me to “try harder,” I…
to be less of a burden to you, maybe the sadness I see
in your eyes and feel in your Soul will lessen. Even just a If you’re a family caregiver:
little a bit.
There is more to your life than caregiving, so try one of
these prompts to explore other areas:
If I try harder…
• I’ve told (loved one) to “try harder” and…
to try to work on my restraint, it might be easier. So of• I’ve learned that it doesn’t work to tell (loved one) to
ten these days, I speak first, and then think. I know it
“try harder” because…
effects you, so I’ll try to try harder.
• When someone tells (loved one) to “try harder,” I…
• I tell myself to “try harder” when…
If I try harder…
• Write your own poem about watching your loved one
to be more like the old me, it
trying harder. You can use David’s format and begin
might be easier for you. I don’t
each line or stanza with “When I watch (loved one) try
even know the new me. How can I
harder…” OR “If (loved one) tried harder…”
expect you to?
Page 3
MINDMATTERS
US military begins work on brain implants that can restore
lost memories, experiences
By Sebastian Anthony on February 10, 2014 from ExtremeTech.com
DARPA (Defense Advanced Research Projects Agency), at
the behest of the US Department of Defense, is developing
a black box brain implant — an implant that will be wired
into a soldier’s brain and record their memories. If the soldier then suffers memory loss due to brain injury, the implant will then be used to restore those memories. The
same implant could also be used during training or in the
line of duty, too — as we’ve reported on in the past,
stimulating the right regions of the brain can improve how
quickly you learn new skills, reduce your reaction times,
and more.
This might sound like something out of a sci-fi film — and
to be honest, we’re probably quite a few years away from
such an implant. While we’ve had a fair amount of success
with tDCS and DBS, we’re still very much at the dumb,
brute-force stage of neuroscience. The lobotomy might be
out of vogue, but modern implants aren’t that much more
refined — they just run electricity through a specific part
of the brain. We’re not entirely sure why it works, and except for turning the device off we can’t really control it.
We are a long, long way away from measuring the exact
pattern of neurons firing that gives a soldier the ability to
use a sniper rifle or defuse a bomb. (Read: MIT discovers
The project, which DARPA has wittily named Restoring Ac- the location of memories: Individual neurons.)
tive Memory (RAM), is currently at the stage where it’s
seeking proposals from commercial companies that have Still, an implanted device — rather than external, cranialpreviously had success with brain implants, such as Med- mounted instrument — is definitely the way to go, if we
tronic. As yet, we don’t know who has submitted propos- want to learn more about how the human brain encodes
als to DARPA, but it’ll probably be the usual susmemories. When you boil it down, all memories are ultipects. Medtronic, which creates deep-brain simulation
mately just a specific set of neuron connections and elec(DBS) implants that are almost miraculous in their ability
tric pulses (spikes). It stands to reason that, eventually,
to control the debilitating effects of Parkinson’s disease
with enough painstaking data collection (provided by the
(video embedded below), is surely interested. Brown Uni- implant) and a lot of analysis (supercomputers) we’ll be
versity, which famously created a brain-computer interable to work out the exact combinations required to reface that is implanted into the brain and communicates
program a human brain to remember certain experiences,
wirelessly with a nearby computer, must be a contender. memories, and skills.
Companies with big R&D budgets, like IBM and GE, might
be involved as well.
The Restoring Active Memory project has two key targets.
First, we need to be able to actually analyze and decode a
human’s neural signals. Some work has been done in this
area, such as brute-forcing the encoding of the optic
nerve, but we’re a long way away from reading a bunch of
neural spikes and knowing exactly what the person is
thinking or experiencing. Second, we want to take that
knowledge of how we encode memories (stored experiences), and somehow use it to re-program a human brain
that has experienced memory loss. “Ultimately, it is desired to develop a prototype implantable neural device
that enables recovery of memory in a human clinical population,” says the proposal.
Page 4
MINDMATTERS
Preserving memories 140 characters at a time after
traumatic brain injury
June 12, 2014 , The Pulse , Networks.org
Twenty-nine year old Thomas Dixon has had a cell phone
since middle school and has grown up in a webconnected world of social media and hand-held technology. So when a brain injury caused a serious, ongoing
memory deficit, it didn't take long for him to figure out
how to use technology to create his own digital memory.
In November 2010, the Philly native was hit by a car while
on a run. He spent a week and a half in intensive care.
While he was fortunate to have had no brain bleeding or
swelling, he sustained the sort of damage often seen in
Iraq war veterans from IEDs (improvised explosive devices).
"We realized pretty quickly that things were not as they
should be," Dixon said. He recovered after many months
of rehabilitation, but his memory remained impaired.
Dixon says he relied on
the notebook for about a
month, but the idea of
recording his memories
that way quickly started to
feel ridiculous.
"I noted to myself how
absurd it was that we
were walking around with
cell phones, yet I was instructed to write things
down."
"Twitter works the way
that episodic memory
does"
He "switched strategies" and decided to create a private
Twitter account that only he could see and access in order
to "Tweet my own memory."
"As of right now," Dixon said, "I don't remember what happened two days ago. I wouldn't even accurately say that I Although he had never used Twitter, he thought that 140
remember what happened yesterday."
character Tweets were perfect for storing and accessing
the kind of mundane but crucial information that gives
The injuries caused ongoing episodic memory loss. Dixon is context to daily life.
quick to explain that his type of memory loss is not the
same as short-term memory loss. After four years, he finds "Twitter works the way that episodic memory does," Dixon
it tedious to deflect comparisons of his condition to the
says, keeping the most recent tweets readily accessible at
types depicted in popular movies like Memento and 50
the top of the list. Older tweets get pushed down the
First Dates.
stack but are quickly accessible by a key word search.
Dixon says that he feels lucky to be living in a digital age
It's not that the slate of memory and experience
where tools like Twitter and other technologies
is completely wiped clean each day, he
can help him live a fairly normal life. "If we didn't
says. "Think about your life as episodes of a TV
have the current state of technology — let's say
show." Episodic memory is "your ability to rewe reversed everything by 20 years — I would be
member what happened during each episode."
significantly impaired."
When it first became apparent that the brain
injury had affected his memory, the hospital
Dixon has given presentations about traumatic
staff gave him a paper and pen to keep track of
brain injury at Philly Nerd Nite. He recently rehis life.
ceived a master's degree in educational psychology from
"I'd wake up in the hospital bed, and there would be a
Temple University and has authored an article for The
note pad, and it would say things like 'You were hit by a
American Mensa Bulletin that will be published in July and
car. You're going through recovery right now. Your family is featured in a video presentation on "Twitter as Assistive
will visit you at 5 p.m.'"
Technology."
Page 5
MINDMATTERS
What Accessibility Features Are Provided with
the Windows Operating System?
University of Washington/AccessIT
Some individuals with disabilities require assistive technology (AT) in order to access computers. Hundreds of Windows AT third-party products are available, making it possible for almost anyone to use Windows® applications, regardless of their disabilities. It should be noted that the availability of AT does not itself guarantee accessibility. Software applications must be designed in a way that is compatible with AT and other accessibility features of the operating system. The following is a list of basic accessibility features that are included with Windows XP.
Previous versions of Windows also included several of these same features.
Display and Readability:
These features are designed to increase the visibility of items on the
screen.
Font style, color, and size of items on
the desktop — using the Display options, choose font color, size and style
combinations.
Icon size — make icons larger for visibility, or smaller for increased screen
space.
Screen resolution — change pixel
count to enlarge objects on screen.
High contrast schemes — select color
combinations that are easier to see.
Cursor width and blink rate — make
the cursor easier to locate, or eliminate the distraction of its blinking.
Microsoft Magnifier — enlarge portion of screen for better visibility.
Accessibility Wizard:
The Accessibility Wizard is designed to
help new users quickly and easily set
up groups of accessibility options that
address visual, hearing and dexterity
needs all in one place. The Accessibility Wizard asks questions about accessibility needs. Then, based on the answers, it configures utilities and settings for individual users. The Accessibility Wizard can be run again at any
time to make changes, or changes can
be made to individual settings through
Control Panel.
Page 6
Sounds and Speech:
These features are designed to make
computer sounds easier to hear or
distinguish — or, visual alternatives to
sound. Speech-to-text options are also
available.
Sound Volume — turn computer
sound up or down.
Sound Schemes — associate computer sounds with particular system
events.
ShowSounds — display captions for
speech and sounds.
SoundSentry — display visual warnings for system sounds.
Notification — Get sound or visual
cues when accessibility features are
turned on or off.
Text-to-Speech — Hear window command options and text read aloud.
Pointer Trails — follow the pointer
motion on screen.
Hide Pointer While Typing — keep
pointer from hiding text while typing.
Show Location of Pointer — quickly
reveal the pointer on screen.
Reverse the function of the right and
left mouse buttons—reverse actions
controlled by the right and left mouse
buttons.
Pointer schemes — choose size and
color options for better visibility.
Keyboard Options:
Character Repeat Rate — set how
quickly a character repeats when a key
is struck.
Dvorak Keyboard Layout — choose
alternative keyboard layouts for people who type with one hand or finger.
StickyKeys — allow pressing one key
Keyboard and Mouse:
at a time (rather than simultaneously)
These features are designed to make for key combinations.
the keyboard and mouse faster and
FilterKeys — ignore brief or repeated
easier to use.
keystrokes and slow down the repeat
Mouse Options:
rate.
Double-Click Speed — choose how
ToggleKeys — hear tones when pressfast to click the mouse button to make ing certain keys.
a selection.
MouseKeys — move the mouse
ClickLock — highlight or drag without pointer using the numerical keypad.
holding down the mouse button.
Extra Keyboard Help — get ToolTips or
Pointer Speed — set how fast the
other keyboard help in programs that
mouse pointer moves on screen.
provide it.
SnapTo — move the pointer to the
default button in a dialog box.
Cursor Blink Rate — choose how fast
(Continued on page 7)
the cursor blinks — or, if it blinks at all.
January,
July, August,
February,
September
March
(Continued from page 6)
Windows XP Accessibility Utilities:
Magnifier — a display utility that makes the computer screen more readable by
creating a separate window that displays a magnified portion of the screen.
Narrator — a text-to-speech utility that reads what is displayed on the screen
— the contents of the active window, menu options, or text that has been
typed.
On-Screen Keyboard — displays a virtual keyboard on the computer screen that
allows people to type data by using a pointing device or joystick.
Utility Manager — enables administrator-level users to check an accessibility
program's status and start or stop an accessibility programs — automatically, if
required.
For more information about how to access these features and utilities in Windows XP or other versions of Windows products visit Microsoft's website Windows XP Accessibility Resources.
Veterans with blast traumatic brain
injury may have unrecognized pituitary
dysfunction
New Members
WELCOME!
Your Name Here
Don’t wait—join today!
Donations
Medical Press.com, June23, 2014
In soldiers who survive traumatic brain injury from blast exposure, pituitary
dysfunction after their blast injury may be an important, under-recognized, and
potentially treatable source of their symptoms, a new study finds. The results
were presented Saturday at ICE/ENDO 2014, the joint meeting of the International Society of Endocrinology and the Endocrine Society in Chicago.
"Our study suggests that deficiencies in the pituitary's growth hormone and
testosterone are commonly seen after blast traumatic brain injury, especially in
patients who are overweight. Because multiple symptoms common with blast
traumatic brain injury are also seen with growth hormone and testosterone
deficiencies, perhaps treating these hormone deficiencies will help improve the
symptom burden and quality of life for these veterans," said lead study author
Jeffrey S. Taylor, MD, endocrinology fellow at Virginia Commonwealth University Medical Center in Richmond, Virginia.
Support AHIA, Survivors of
head injury, their families
and loved ones. Contribute
to AHIA today by sending
us your tax-free donations!
Check out our website for
a donation form today.
www.alamoheadinjury.org
Blast traumatic brain injury (bTBI) is increasingly common in military personnel
returning from combat. A common consequence of bTBI in general is pituitary hormone dysfunction, which can occur
even without mechanical head trauma and can interfere with the soldier's recovery, long-term health, and overall wellbeing. A soldier's depression, post-traumatic stress disorder (PTSD), and certain medications may further complicate
diagnosing possible pituitary dysfunction, so it often goes unrecognized and untreated.
The most common finding involved growth hormone deficiency and hypogonadism associated with low testosterone,
especially in their overweight patients, suggesting that these hormone deficiencies occur frequently after bTBI and that
treating them may improve their symptoms.
Page 7
(To read the complete article, visit http://medicalxpress.com/news/2014-06-veterans-blast-traumatic-brain-injury.html)
July, August, September
Learning Ways to Help People with TBI Who Are Unable to
Manage Their Finances
Michael Kaplen, Esq. and Shana De Caro, Esq., BrainLine.org
My husband sustained a brain injury when he was playing soccer more than a year ago. His recovery has
been slow and, so far, he hasn’t been able to return to his job. He is home alone all day while I am at
work and I recently found out that he has been spending most of his time buying stuff on TV. He’s also
given large sums of money to any organization that phones or stops by looking for a donation. I know this is not his
fault — this is his injury — but if things go on like this, we’ll be broke. Is there anything I can do?
Individuals who have sustained a traumatic brain injury often have cognitive, emotional, and behavioral difficulties that impair their ability to manage their financial affairs. The assistance that is required
depends on the distinct needs of the individual and can range from merely providing help to pay bills to complete management of a person’s financial affairs.
It is important to fashion the least restrictive remedy to protect a person with a brain injury from his or her inability to
manage finances and to allow the person as much freedom and personal control as possible. In other words, a remedy
needs to be found under the law that is tailored to the individual and limited to only those activities for which a person
needs assistance.
The first step may be to work with the team that provided your husband with rehabilitative services. If he still has a
case manager, that person might also be able to help craft a solution. The simplest answer would be for him to agree to
not have access to his credit cards when you are not home. Together you might also agree that he can have one credit
card with a modest maximum limit that will not allow any overage. He could also have a small amount of cash that he
could give in the case of an in-person donation.
The next step would involve a legal proceeding. In New York State, as in most states, the appropriate legal proceeding
to determine the needs of an individual with some incapacity, in need of financial management assistance, is the
guardianship proceeding. The rules for Guardianship in New York State are found in Article 81 of the Mental Hygiene
Law.
The New York guardianship scheme focuses on the least restrictive alternative and on the decisional capacity of a particular person, his/her functional limitations, rather than any underlying mental or physical condition or impairment. In
this manner, appropriate assistance can be crafted in many instances without the necessity of appointing a guardian
over all aspects of that individual’s life or finances. The ultimate goal is to provide a guardian with only those powers
necessary to assist the incapacitated person to compensate for his/her limitations and to allow that person the greatest amount of independence and self-determination, always keeping in mind the person’s ability to appreciate and understand his or her functional limitations.
In deliberating on the need to appoint a guardian for a person who has cognitive, emotional, or behavioral limitations
following a brain injury, it is important to consult with a qualified attorney to obtain necessary legal advice and assistance. In many states, there are legal services available to those who cannot afford private legal counsel in guardianPage 8
ship proceedings. It is best to inquire of your local court’s guardianship office to obtain further information and avail-
able resources.
New Meeting
Location
Our July, August, September meetings
will be at a new location! This quarter
we will meet at RIOSA HealthSouth.
This simplified map will give you an
idea of its relative location and can
also be downloaded as a PDF from our
website’s Contact Us page.
January,
July, August,
February,
September
March
2013 –2014 AHIA BOARD OF DIRECTORS
Lynn Broomefield, President
Dr. Doug Cooper, Vice-President
Meeting Locations for 2014
January 22, February 26, & March 26 :
Easter Seals Rehabilitation Center
April 23, Mary 28, June 25 : Warm Springs Rehabilitation
at Thousand Oaks
July 23, August 27, September 24 :
RIOSA HealthSouth
Kay Dabney, Recording Secretary
Kay Dabney, Treasurer
Michelle Glenn, Joy LoCicero, Debbie
Bornman, Blessen Eapen, Carol Kattan,
Board Members at-large
Sedah Garner & Sam Velazquez:
Survivor Representatives
October 22, November 19, December (TBA) :
Warm Springs Rehabilitation at Westover Hills
Page 10