Brain Injury Awareness: United We Stand/Divided We Fall

We need to unite brain injury organizations for better treatment and funding.

Posted Mar 16, 2016

March is Brain Injury Awareness Month, yet the funding for research and treatment is divided amongst many different subgroups. These subgroups include Stroke, Aneurysm, Traumatic Brain Injury (TBI), Parkinson Disease (PD), Multiple Sclerosis (MS), Cerebral Palsy (CP) and Amyotrophic Lateral Sclerosis (ALS). Each of these subgroups are a form of brain injury. Each of these groups has their own organization, fund raising, and even a special month of the year. Thus, the focus of funds and research is divided.

This is in direct contrast to both the Heart Association and the Cancer Association. We all know there are various forms of heart disease and many types of cancer. Yet, the focus of the fund raising, research, education, and treatment are focused as a united front. This is not to say people do not give specific funds for a specific type, such as breast cancer. However, there are many clinics and institutes for cancer research and treatment. The prominent institutes are the Dana Farber Cancer Institute in Boston, the Sloan Kettering Cancer Center in New York, and the MD Anderson Cancer Center in Texas. Each of these well-known cancer centers do research and provide treatment on the many types of Cancer.

pixabay, used with permission
Source: pixabay, used with permission

If you Google major heart clinics that conduct research on and treat heart disease you will discover some of the most popular clinics. The Cleveland Clinic in Ohio, Mayo Clinic in Minnesota, and New York-Presbyterian University Hospital of Columbia are a couple of the high-ranking facilities in the United States. On the other hand, if you Google major Brain Injury Clinics you receive very limited information regarding the wide variety of subtypes mentioned above.

                                                      Definition of Brain Injury

In my book, Coping with Concussion and Mild Traumatic Brain Injury, I wrote in the introduction the following:

A brain injury is an injury to the brain that causes neurological dysregulation, meaning that the brain is not functioning properly.  This can result in ongoing physical, emotional, and thinking problems. With this knowledge in 1994 the World Health Organization definition adopted terms more descriptive of actual injuries to the brain.  Acquired Brain Injury (ABI) is used to describe any damage to the brain not present at birth. A type of ABI called Traumatic Brain Injury (TBI) includes any damage to the brain caused by an external force.

                                                         Types of Brain Injury:

Cerebral Palsy (CP) is a brain injury at birth.


Stroke or “Brain Attack” is a form of cerebrovascular disease that affects the blood supply to the brain. It interrupts the flow of blood to the brain and can occur from one of two ways:

1) A Blood clot blocks a blood vessel or artery. It is called Ischemic stroke. Blood clots in the brain cause brain injury.

2) A Blood vessel or artery breaks.  This is called a Hemorrhagic (heh-more-raj-ik) stroke. An aneurysm is a weakness or thinness in the blood vessel wall and is a common element that leads to a Hemorrhagic strokes.

I had a hemorrhagic stroke from a cavernous hemangioma, which is a bundle of capillaries.  The capillaries broke and bled in my head, while I was driving.  This bleeding caused me to pass out while driving, resulting in a 60- mile an hour head-on automobile accident.  Five months later, I had to have brain surgery to remove the cavernous hemangioma.

TIA is a Transient Ischemic Attack  This means there is a brief reduction of the blood flow to the brain.  It mimics stroke symptoms stated below and also can be confused with symptoms of a migraine headache or partial seizure. The difference is the amount of time involved.

Multiple Sclerosis (MS) is a central nervous system disease that involves inflammation of the myelin sheath in the brain.

What Causes MS?

Multiple Sclerosis is an inflammatory demyelination disease affecting central nervous system white matter. Inflammatory cells, mainly activated by lymphocytes and monocytes, cross the blood-brain barrier in the white matters surrounding blood vessels, destroying myelin with relative pairing of axons. Electron microscopic studies have shown the active role of invading macrophages in myelin destruction. These changes are accompanied by swelling of the astrocyte foot processes and interstitial edema.

Parkinson’s disease (PD)

Parkinson’s disease (PD) is a neurodegenerative brain disorder that progresses slowly in most people. Normally, there are brain cells (neurons) in the human brain that produce dopamine. These neurons concentrate in a particular area of the brain, called the substantia nigra. Dopamine is a chemical that relays messages between the substantia nigra and other parts of the brain to control movements of the human body. This neuromodulator helps humans to have smooth, coordinated muscle movements. Sometimes, however, these dopamine-producing cells become damaged. When approximately 60 to 80% of the dopamine-producing cells are damaged, and fail to produce enough dopamine, the motor symptoms of Parkinson’s disease appear.

ALS, or amyotrophic lateral sclerosis

ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. This is a brain injury. A-myo-trophic comes from the Greek language. "A" means no. "Myo" refers to muscle, and "Trophic" means nourishment – "No muscle nourishment." When a muscle has no nourishment, it "atrophies" or wastes away. "Lateral" identifies the areas in a person's spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates it leads to scarring or hardening ("sclerosis") in the region.

PLS or Primary lateral sclerosis

PLS is a rare neuromuscular disease in the brain that causes progressive muscle weakness in the voluntary muscles. PLS belongs to a group of disorders known as motor neuron diseases, which is a brain injury. Motor neuron diseases develop when the nerve cells that control voluntary muscle movement degenerate and die, causing weakness in the muscles they control.  PLS only affects upper motor neurons.  There is no evidence of the degeneration of spinal motor neurons or muscle wasting (amyotrophy) that occurs in amyotrophic lateral sclerosis (ALS).

Traumatic Brain Injury

A traumatic brain injury can occur with or without injury to the skull.  This can occur when there is no visible damage to the head, such as after a sports collision, blast injury or automobile accident involving whiplash. The brain may still have been rotated or jostled inside the skull with a force enough to cause shearing and tearing of the nerves. The powerful blast at the Boston Marathon in 2013 killed three people, and over 20,000 people within a 1/4 mile radius sustained a concussion from the blast. The majority of these victims are still not aware that many of their symptoms are from post-concussion syndrome due to their lack of knowledge about concussion related to sound waves.  Yet, anyone in the military that has been exposed to a bomb explosion is keenly aware of the lasting affects a blast injury can have on the brain.

United We Stand----Currently we are Divided and the research, funding, training, and treatment for the wide variety of brain injury do not exist. There are NOT focal centers or institutes for Brain Injury as there are for Heart and Cancer. There are support groups for cancer in general and specific types, such as breast cancer or prostate cancer.  Similarly there are support groups for TBI, stroke or aneurysm. I know, because as a survivor and now as a speaker I’ve been to them. There are NOT brain injury support groups that include people with MS, ALS, TBI, stroke, who can share what it is like not to be able to speak or remember your children’s birthdays.

For the breakthrough in Brain Injury in treatment and recovery, we must UNITE !

This March, we the people with MS, PD, CP, TBI, ALS, PLS, TIA, and Stroke must come together as one to claim awareness of March being Brain Injury Awareness Month.

(Diane Roberts Stoler, Ed.D. ©) copyright March 9 2016