This is an excerpt from the book, “The Broken Brain”, and
it describes the importance of the brain in everyday life.
“Only
in very recent years have we realized that life resides in the brain. The
heart, which seemed so important, is relatively insignificant. The heart is a
simple mechanical pump made of muscle tissue. It can be stopped, as it is
during open heart surgery, and life can be sustained by a machine. Hearts can
be transplanted from one person to another without causing an iota of change in
their thoughts or feelings, except to the extent that the experience of illness
and surgery affects them. Within the past several years, in fact, doctors have
even used a totally artificial mechanical pump to replace diseased hearts. For
many years, portions of the heart have been replaced with artificial parts,
such as valves.
To do
any of these things with the brain is unthinkable. Its parts are irreplaceable.
When a part is damaged or lost, as during a stroke or head injury, an important
component of a cognitive function is damaged or lost forever. The person has
difficulty talking, or seeing, or recognizing familiar faces. Although
retraining, as through speech therapy, may help, the injury cannot be remedied
by replacing the damaged bit of brain. Whole brains will probably never be
transplanted. The operation is too difficult, because brain tissue is very
sensitive and delicate, and because the brain has complex connections to too
many different parts of the body; ....for to transplant a brain is to
transplant a personality, an identity, perhaps a soul.”
Ever heard of it? We doubt
it; it is a work in progress. Brain Aneurysm Rupture or an AVM (Arteriovenous
Malformation) Bleed - you wouldn't think of it unless it happened to you or
someone you love. If and when it happens and if you are lucky enough to make
it, your life changes drastically. One noted doctor said, “If five people had a
bleed today; in one year one would have returned to normal status, one would be
disabled, three would be dead!” Frightening isn't it! Not only do we deal with
these issues, we deal with many other issues.
We have a wonderful
internet support group, moderated by Bill Maples, PH.D. from West Georgia
University. He deserves a pair of wings. We help each other get through the
tough times; rejoice with each other during the good times; and yes, mourn together
when we lose a treasured friend. You can see the AVM and Aneurysm narratives by
going online to: http://www.westga.edu/~wmaples/aneurysm.html.
We, the undersigned
AVM/Aneurysm Society, seek assistance from the Federal Government, Social
Security, the State Governments, the medical profession, our community, and the
understanding of the public. As Abraham Lincoln said in 1863, "Our
country is for the people, by the people ..". Even those with brain injuries
deserve basic rights. We did not ask for an Aneurysm or AVM. Those who suffer
from an AVM were born with it; those from an Aneurysm have learned later,
rather than sooner, that aneurysms are hereditary.
©
As
the past decade was the “Decade of the Brain”, we, the undersigned, would
like to declare that this decade be called the “Decade of AVM/Aneurysm Awareness” for those who have been fortunate enough to have survived an
AVM or Aneurysm and dedicated to those who have not.
©
WE
REQUIRE ADVOCATES AND LOBBYISTS TO FIGHT FOR FUNDING FOR NECESSARY TRACKING
PROGRAMS, EDUCATION, SERVICES, AND RESEARCH FOR THE AVM AND ANEURYSM “SOCIETY”
IN THE GOVERNMENTS!
©
Through active participation, years of
determination, and strong leadership, the Brain Injury Association, Inc., which has a National and State offices, was formed for
traumatic brain injuries. The BIA’s mission is to “create a better future through brain
injury prevention, research, education and advocacy for traumatic brain injury”.
©
The AVM/Aneurysm Society has no national, state,
or local organizations to assist us. We are looking for family members, concerned
citizens, advocates, and lobbyists to show us the way.
©
Many
of us during our professional careers have the option to chose our insurance
preferences. These choices consisted of medical, dental, co-payments, H.M.O. and
P.P.O., and if offered; long term disability. When we choose long term
disability, we never thought we’d need it.
©
Unfortunately,
those of us who have been diagnosed with an AVM or Aneurysm have found that we
often not only need our disability insurance, but depend upon it. If we paid
for it with after tax dollars, we are fortunate not to have to pay taxes on the
private disability money today. But the way the Internal Revenue laws are,
there is a very strong possibility that our disability insurance may well be
thought of as taxable income in the near future!
©
Most,
if not all, private disability insurances require the applicant to file with
the Government SSDI, usually within a specific time. Some corporate disability
insurance companies actually reduce the disability payments which we might
receive from SSDI even though we have not yet been approved for disability.
©
Lastly,
we are often stressed by representatives of the disability company with phone
calls asking if we are any better and implying not too subtly that we are ready
to return to work. Many of us are in no condition to deal with this type of
emotional stress.
©
While
we are busy fighting for our lives, we have the misfortune to have to deal with
Federal Social Security. This process requires completing extensive paperwork.
This paperwork alone would make a person who does not have a brain injury want
to run from the room screaming. For those of us with a brain injury, the
paperwork can take weeks to complete and often requires the assistance of
another party.
©
We
submit the paperwork and the required copies of medical files, operative
reports from our surgeries, test results, ER visits when applicable, plus
required forms form our neurologists, neuropsychologists and neurosurgeons. Even with all of this supporting
documentation, many of us are denied social security disability.
©
Often we are told the reason is because of our
age and/or education - not because of our disability. Some of
us have had friends who were in a coma and were denied social security
disability benefits!
©
Social
Security Disability applications are often met with two denials and a resultant
hearing. In most cases, one must go through the expense of hiring an attorney
before we are approved.
©
A
Social Security hearing and decision can take 1.5 or more years! This results
in unnecessary expenses, delays at a time in our lives when we can least cope
with them, and no income to pay increasing large medical bills or even our home
mortgages.
©
Each
one of us knows our own body. We need the medical profession to listen to all
of our issues, consider if they can be a result of our brain injury, and then
come up with some thoughts or recommendations. If they do not know, we need for
them to tell us and let us know they will check with some of their colleagues
and get back to us.
©
Many
of us having memory issues will walk into the doctor’s or surgeon’s office with
a list of questions and concerns. We are doing this because we are concerned
and it is important to have all of our questions answered. There are
doctors/surgeons that feel that we do not need to know the details about our
condition.
©
We
do have a need to truly understand what happened to our brain and body, the
underlying after effects of this illness, and what side effects require
immediate medical attention.
©
We
would like our neurosurgeons to:
(1)
Be
honest with us and talk to us about our diagnosis and the results of our
surgery.
(2)
To
understand that once their surgery is over, our recovery is just beginning.
(3)
Yes,
they have saved our lives, but most of us cannot go back to work in 4-6 weeks;
to tell us that is to allow us to feel as if we failed.
(4)
We
want our doctors to be truthful with us; if they are unable to help us, we
would appreciate their efforts in finding a medical professional who can.
(5)
We
need guidance after we are released from their care; our list of “to do's”
should include:
a.
neurologist
to assist with anti-seizure meds
b.
rehabilitation
for physical, speech, occupational therapy
c.
neuropsychologist
to visit if we should have the need of their expertise
d.
local
brain injury support group
e.
copies
our operative procedures and films
f.
list
of any potential side effects that requires an immediate call to our
neurosurgeon or a visit to a hospital ER.
©
Most
Aneurysm and AVM survivors are on anti-seizure meds at one point in their life if
not for the rest of their life. The majority are also on anti-depressants
because:
(1)
The
area of our brain which has been damaged can no longer manufacture the brain
chemical, serotonin, which is required for normal brain function.
(2)
Many
of us have experienced an event so traumatic that we have nightmares and
flashbacks.
(3)
As
this type of injury is a life altering event which results in our inability to
work in a profession which we love, depression is very common.
(4)
For
all of the above reasons, we feel that we are no longer the same person we were
before the incident.
©
The
cost of our prescriptions are high, especially anti-seizure meds, yet it is
absolutely necessary that we take them. Those of us who are fortunate enough to
have some prescription insurance do get some help with the cost so long as the
particular anti-seizure medication is covered by the insurance company. For
those of us who live on Social Security Disability which offers no prescription
insurance, it is almost unaffordable. And to make matters worse, the newer
anti-seizure meds are the most costly.
©
Many
brain injured patients require additional medicines to keep them healthy and
assist with the pain and other post-surgical effects.
©
Every
one in society is used to seeing a service guide dog for the blind or a
mobility service dog. Well, the brain injury people have service dogs as well.
They come in all different sizes, shapes, and breeds.
“We live with Epilepsy, Fibromyalgia, Psychiatric Disorders and
a plethora of disabilities that are not readily apparent. . . . . . We are told
we look healthy, not disabled. Sometimes we are suspected of sneaking our ‘pet’
into places where pets are not allowed. Migraine Alert Dogs alert to an
oncoming migraine headache in their susceptible handler. Seizure Alert Dogs
alert to oncoming seizures in their epileptic handler. For persons living with
Major Depression, a Psychiatric Service Dog may be trained to: assist in waking
the person each morning; bring medications to the disabled handler; assist with
household chores such as laundry; help the person get out of the house and into
public or social settings; be trained to 'hug' or 'stay' with the disabled
handler during acute emotional crises. For persons living with Panic Disorder
or Anxiety Disorder, a Psychiatric Service Dog may alert to oncoming attacks,
as well as to stay with the handler throughout the duration of the attack.”1
1 The above parts were
taken from Delta Society on Service Dogs for Invisible Disabilities at http://www.deltasociety.org/nsdc/sdhelp.htm
©
When
we take our service dogs out; we are questioned by store owners such as Wal-Marts
and Kmarts, restaurants, libraries, and other establishments even if they have
their service capes on. Because some of our dogs are small, the establishments
deny our rights to bring our service animals in or question “what is our
disability”. Service dogs are of great assistance to all acquired brain injury
survivors; not only AVM and Aneurysm patients.
©
We
do not want to have to call the police to be able to get into an establishment,
but many times that is what we have to do.
© When we get into an establishment
where only service dogs are allowed, we may then run into that one 'uninformed
consumer' telling us that we are breaking the law. We are living with our
disability, we don’t feel we to have to defend it or to educate society at
every turn.
© We would like to increase
awareness, educate, and get funding to have the:
(1)
Federal & State Governments: provide a National Foundation for
AVM and Aneurysm patients where they can get assistance such as:
a. Information
on their Illness
b. Applying
for SSDI
c. Status
of Application for SSDI
d. Review
of Denial Claims
e. Medical
Aid
f. SSDI
Secondary Insurance
g. On-Line
or State Support Help
h. Prescription
Aid
i. Develop
a “Fine” Systems for those “Vendors” that do not abide by the service dog
policies as described by the ADA
(2)
Private Disability Insurance: Allow us the
rights to benefits that we have worked for from our long term disability
benefits companies without the monthly or quarterly stressful phone calls.
Trust our neurosurgeons’, neurologists’, and neuropsychologists’ opinions; we
do. Schedule annual reviews by written requests for updates with our doctors.
We need insurance companies to educate their staff on what brain injuries are
and the devastating effects that could follow.
(3)
SSDI: We trust our “neuro” specialists with our lives; we would
greatly appreciate it if you would trust what information they send to you on our
loss of abilities. Educate the staff on what brain injuries are and the
devastating effects that could follow. Create a simple package for brain injury
survivors. Provide a quicker and faster response system of notification to
applicants.
(4)
Patient’s Rights: We have the right to be treated as a person with feelings; to be
listened to with all of your attention; to be spoken to; to get appropriate and
full answers from doctors and surgeons; and lastly; never tell us “that’s
nothing to worry about” when it comes to headaches.
(5)
Service Dogs: Educate the service and consumer
industry that there are all types and sizes of service dogs. Allow any person
who has a disability, even a disability which is invisible, to enter their
establishment with their service or assistant dog without harassment and
without having to call the local police.
(6)
Education: We would also like to educate the public. You see, there are
some of us who have physical disabilities that the public can see. The majority
of brain injured persons have disabilities which are not apparent.
©
Almost
all of the brain injury survivors have multiple disabilities or
"restrictions" that affect every day life. From waking in the
morning, every day actions become more challenging to those brain injury survivors.
The loss of short term memory along with language deficits and depression can
make the easiest task so challenging that it takes so much energy, it now
becomes a frustrating task. The following lists the many "invisible"
disabilities that a brain injured patient can have. These deficits are very
similar whether from an AVM, an Aneurysm, a Stroke, or a Traumatic Brain
Injury. They include:
(1) Changes in social behavior
(2) Changes in personality
(3) Decreased vital capacity in breathing
(4) Defects in vision
(5) Depression
(6) Difficulty in locating objects within the environment
(7) Difficulty in identifying colors
(8) Difficulty in recognizing drawn objects
(9) Difficulty in reading and writing
(10) Difficulty in recognizing faces
(11) Difficulty recalling newly learned information
(12) Difficulty placing remembered events in proper sequence
(13) Difficulty in understanding spoken words
(14) Difficulty with problem solving issues
(15) Difficulty persisting on tasks
(16) Difficulty inhibiting automatic or programmed movements
(17) Difficulty in identification of and verbalization of objects
(18) Difficulty with organization/perception of the environment
(19) Difficulty with drawing objects correctly
(20) Difficulty in distinguishing left from right
(21) Difficulty with mathematics
(22) Disturbance with selective attention to what we see and hear
(23) Inability to focus visual attention
(24) Inability to express language
(25) Inability to recognize written words
(26) Inability to recognize the movement of an object
(27) Inability to attend to more than one object at a time
(28) Inability to name an object
(29) Inability to locate the words for writing
(30) Inability to focus on a task
(31) Inability to plan a sequence of complex movements needed to complete multi-stepped tasks
(32) Inaccurately seeing objects
(33) Interference with long-term memory
(34) Loss of spontaneity in interacting with others
(35) Loss of flexibility in thinking
(36) Memory flashbacks/nightmares with loss of long term memory
(37) Mood changes
(38) Persistent talking
(39) Persistence of a single thought
(40) Problems with reading
(41) Sensory overload
(42) Short-term memory loss
(43) Sleeping difficulties including insomnia and sleep apnea
(44) Slowness in new learning
We, the undersigned, have been stricken with or
know/have known someone with a brain injury due to an AVM and/or Aneurysm. We
have signed this petition to let the Governments and Public know how the system
has affected us. With these signatures, we want the Federal and State
Governments to becomes aware of our situation, to find necessary funding, to
change SSDI policies, to make new laws, and to find advocates to assist with
our cause. Thank you.
"The time is always right to do what is right" -
Martin Luther King, Jr.
By clicking on this link, you can sign this Petition at the PetitionSite.com webside where you can display your name as anomymous.
Thank You.
(A separate window will open)
By signing this petition, you agree that inappropriate language will not be used nor will
this “PETITION” be used for your own personal agenda. You also agree that you will allow the authors of this petition to review your information and edit your “short story” for inappropriate language. While the authors will not
change the content of our story, if your story does not meet the needs of this petition; your information will be deleted.
PLEASE FORWARD THE URL FOR THIS PETITION TO ALL OF YOUR FAMILY MEMBERS, FRIENDS, AND DOCTORS FOR THEIR
SIGNATURES