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.
AVM/Aneurysm Society Bill of Rights
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.
Private Disability Insurance:
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.
Federal Disability Insurance (SSDI):
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.
Service Dogs for Invisible Disabilities:
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
The above parts were taken from Service Dogs Invisible Disabilities at http://www.sdid.net/index.html(1)
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
(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
(39)Persistence of a single thought
(40)Problems with reading
(42)Short-term memory loss
(43)Sleeping difficulties including insomnia and sleep apnea
(44)Slowness in new learning
AVM/Aneurysm Society for Bill of Rights Petition
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.
Won’t you please help us?
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