Guitarist Jason Crigler has been intensely involved in New York’s downtown music scene for over a decade, playing, recording and touring with numerous bands and musicians, including John Cale, Linda Thompson, Ollabelle, Teddy Thompson and Marshall Crenshaw, and performing with Suzanne Vega, Norah Jones and Rufus Wainwright. On August 4, 2004, Jason suffered a brain hemorrhage while onstage at a show. His wife, Monica, then two months pregnant with their first child, raced Jason to the hospital, where doctors offered a grim prognosis.
Jason’s hemorrhage was caused by an arteriovenous malformation (AVM). An AVM is an irregular blood vessel with arteries and veins that lack pressure-diffusing capillaries, often causing the blood vessel to spring a leak. (An AVM bleed is usually less volcanic than an aneurysm.) Doctors believed Jason would most likely not survive, and in the unlikely event that he did, they predicted he would probably require constant care for the remainder of his life.
Over the months that Jason spent in the neuro ICU, his family, including his wife, his parents and his sister, remained with him for every minute of every visiting hour and often overnight. They talked to him, read to him, played music, stretched him, hugged him and over and over told him, “I love you.” They never left his side. They never stopped stimulating him. They never stopped believing that Jason could make a full recovery, even as Jason faced one life-threatening complication after another. At last Jason reached rehabilitation. With the baby due soon, Monica and the rest of Jason’s family decided to move to Boston. Monica’s family was there and could help her with the newborn, and Jason could receive intense treatment at Spaulding Rehabilitation Hospital.
At Spaulding, Jason began an aggressive regimen of speech, physical and occupational therapies. Slowly but surely, he regained control of his body and began speaking and walking again. One year and one week after the initial hemorrhage, Jason went home. Therapies continued through Spaulding’s out-patient program, but Jason began rebuilding an independent life. At first, he needed help bathing, dressing, cooking, eating, planning his day and getting around. Over time, he needed less and less help. He began to take on the responsibilities of being a father. He began to play the guitar again.
Jason has returned to writing and performing music, and in 2008 he released the album The Music of Jason Crigler. In December 2008, Robert Siegel of NPR’s All Things Considered interviewed Jason about the album. Recognition of Jason’s determination and grit in dealing with the many challenges he faced was offered when he was honored at Spaulding’s 2008 Annual Dinner. Jason’s story continues to be featured as one of the success stories on Spaulding’s website. Jason and his sister, Marjorie, travel extensively to share this remarkable story with brain injury survivors, caregivers and medical personnel at schools, hospitals and brain injury associations. As Jason says, “We want to show what is possible.”
“Jason Crigler: Hope and Recovery.” All Things Considered. National Public Radio. December 18, 2008.
» “Darkness into light.” Jonathan Perry. The Boston Globe. April 18, 2008.
» “Jason Crigler: The Music of Jason Crigler.” John Dworkin. All About Jazz. November 2, 2008.
» Marjorie Crigler.
Brain Trauma: Arteriovenous Malformations and Brain Aneurysms
An arteriovenous malformation (AVM) is a defect in the circulatory system in which arteries and veins become tangled and interfere with the circulation of blood. Many people with AVMs outside of the brain experience no symptoms, and the condition can persist undiagnosed for a person’s entire life. It is not known why AVMs occur; research suggests that they develop early in life, before or shortly after birth. It is estimated that about 12 percent of people with AVMs in the brain or spine will experience symptoms of some kind. These symptoms can range from seizures to headaches.
The most significant risk of a neurological AVM is a hemorrhage, which can cut off blood flow to parts of the brain, starving them of oxygen. Less catastrophically, problems with blood flow in the brain can result in seizures or headaches, which sometimes lead to the discovery of AVMs. When an aneurysm bursts and bleeds in a brain hemorrhage, it can result in a stroke — the sudden cutoff of blood flow — which can result in loss of function in parts of the brain. After a stroke, individuals may be able to recover brain function, but the consequences can include permanent loss of function in parts of the brain.
AVMs can be discovered by doctors using angiography, in which a dye is injected into arteries before an X-ray scan is taken. Less invasive scans include computed axial tomography (CT) and magnetic resonance imaging (MRI). Once discovered, AVMs can be treated with surgery or radiation. Short of surgery, medication can be used to treat the symptoms of an AVM.
Current research into AVMs is focused on both treatment and on improving doctors’ ability to determine the risk of hemorrhages.
Brain injuries, in general, are much more common than many realize. In the United States alone, there are 1.4 million brain injuries each year. There are 3.17 million people living with a disability as a result of a brain injury. Each year, 125,000 people incur lifelong disabilities as a result of a brain injuries. The estimated annual cost of these injuries is $60 billion.
» “Arteriovenous Malformations and Other Vascular Lesions of the Central Nervous System Fact Sheet.” National Institute of Neurological Disorders and Stroke. March 2004. NIH Publication No. 04-4854
» “About Brain Injury.” Brain Injury Association of America
» “What is an Arterioveous Malformation (AVM)?” Cerebrovascular Imaging and Intervention Committee of the American Heart Association Cardiovascular Council. Randall T. Higashida, M.D., Chair
» ” What is a Stroke?” National Stroke Association.
Long Term Care, Insurance and Health Policy
Recovering from a brain injury may require intensive, long-term care, which can exhaust individuals’ health insurance and personal resources. The federal government’s Medicare website describes long-term care as a variety of services, including medical and non-medical care of people who have chronic illnesses or disabilities. Most long-term care is meant to assist people with daily living activities such as dressing, bathing and using the bathroom.
For those without insurance, or those who have reached a cap on their benefits, federal and state funds may be available, although certain qualifying conditions must be met. Medicaid is the primary source of funds for long-term care in the United States. In 2000, 45 percent of funds spent on long-term care came from Medicaid; individuals paid out of pocket for approximately one third of such care. (Many individuals pay part of their expenses while receiving funds through Medicaid.)
Demand for long-term care support exceeds the available amount of resources. In 2005, about 2 million people were on waiting lists for some type of long-term care. As the American population ages, the need for long-term care is projected to grow sharply. At the same time, costs for care have been increasing quickly, and funds from state and local government sources have not kept up.
Most funding for home care is provided by Medicare, which offers insurance for those 65 or older and for younger people with certain conditions. Medicare is typically granted after an injured adult is approved for Social Security disability payments. However, there is a mandatory two-year waiting period between the time a person is approved for Social Security disability payments and the time that person is eligible to apply for Medicare.
Medicaid funds about 20 percent of home care costs. One complicating factor in funding long-term care is that there is no single agency to oversee such care; a report from the National Council on Disability says more than 20 different agencies and nearly 200 programs are involved at the federal level. State and local programs further complicate the situation. Thus, those who wish to provide at-home care face a daunting set of bureaucracies in seeking support.
» “Financing Long-Term Care for the Elderly.” Congressional Budget Office. April 2004.
» Social Security Administration Disability Benefits Information
» “The State of 21st Century Long-Term Services and Supports: Financing and Systems Reform for Americans with Disabilities.” National Council on Disability. December 15, 2005.
According to the National Family Care Association, more than 50 million family caregivers help care for family or friends. Assistance with basic daily routines such as bathing, dressing, cooking and eating, as well as medical necessities such as taking medication and performing rehabilitation activities is common (www.familycaregiving101.org/about).
A 2008 update of the National Family Caregiving Survey by the American Association of Retired Persons (AARP) and the National Alliance for Caregiving estimates the economic value of this unpaid work at $375 billion. In 1999, the MetLife Mature Market Institute calculated additional costs of as much as $29 billion to employers in lost productivity from workers whose caregiving responsibilities sometimes interfere with jobs.
This economic loss is of concern because over 64% of family caregivers are employed in jobs in addition to performing their caregiving responsibilities. The 1997 National Family Caregiving Survey described the typical caregiver as “a married woman in her mid-forties [who] provides an average of 18 hours/week of caregiving, works full-time, lives near the care recipient and has an annual household income of approximately $35,000.” The average length of time they spent caregiving was about eight years, with about one-third of the respondents providing care for 10 or more years.
More difficult to quantify are the effects of emotional, physical and financial stress on caregivers. In addition to the toll on their own health, caregivers often helped with expenses, spending an average of $19,525 out-of-pocket over the course of care.
» “What is Family Caregiving?” National Family Caregivers Association.
» “Valuing the Invaluable: The Economic Value of Family Caregiving, 2008 Update.” Research Report, November 2008. Ari N. Houser and Mary Jo Gibson, AARP Public Policy Institute.