Archive for the 'Brain Injury' Category


A Letter from your Brain

I’m glad to see that you are awake! This is your brain talking. I had to find some way to communicate with you.  I need you to take care of me. As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine, “it’s time to get on with life.” That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to listen to me, really listen. Don’t shut me out. Don’t tune me out. When I’m getting into trouble I’ll need your help more than I ever have before.
I know that you want to believe that we are going to be the same. I’ll do my best to make that happen. The problem is that too many people in our situation get impatient and try to rush the healing process; or when their brains can’t fully recover they deny it and, instead of adapting, they force their brains to function in ways they are no longer able too. Some people even push their brains until they seize, and worse… I’m scared. I’m afraid that you will do that to me. If you don’t accept me I am lost. We both will be lost.
How can I tell you how much I need you now? I need you to accept me as I am today… not for what I used to be, or what I might be in the future. So many people are so busy looking at what their brains used to do, as if past accomplishments were a magical yardstick to measure present success or failures, that they fail to see how far their brains have come. It’s as if here is shame, or guilt, in being injured. Silly, huh?
Please don’t be embarrassed or feel guilt, or shame, because of me. We are okay. We have made it this far. If you work with me we can make it even further. I can’t say how far. I won’t make any false promises. I can only promise you this, that I will do my best.
What I need you to do is this: because neither of us knows how badly I’ve been hurt (things are still a little foggy for me), or how much I will recover, or how quickly, please go s-l-o-w-l-y when you start back trying to resume your life. If I give you a headache, or make you sick to your stomach, or make you unusually irritable, or confused, or disoriented, or afraid, or make you feel that you are overdoing it, I’m trying to get your attention in the only way I can. Stop and listen to me.
I get exhausted easily since being hurt, and cannot succeed when overworked. I want to succeed as much as you do. I want to be as well as I can be, but I need to do it at a different pace than I could before I got hurt. Help me to help us by paying attention and heeding the messages I send to you.
I will do my part to do my very best to get us back on our feet. I am a little worried though that if I am not exactly the same… you will reject me and may even want to kill us. Other people have wanted to kill their brains, and some people have succeeded. I don’t want to die, and I don’t want you to die.
I want us to live, and breathe and be, even if being is not the same as it was. Different may be better. It may be harder too, but I don’t want you to give up. Don’t give up on me. Don’t give up on yourself. Our time here isn’t through yet. There are things that I want to do and I want to try, even if trying has to be done in a different way. It isn’t easy. I have to work very hard, much harder, and I know that you do too. I see people scoff, and misunderstand. I don’t care. What I do care about is that you understand how hard I am working and how much I want to be as good as I can be, but I need you to take good care of us, as well as you can do that.
Don’t be ashamed of me. We are alive. We are still here. I want the chance to try to show you what we are made of. I want to show you the things that are really important in life. We have been given another chance to be better, to learn what is really important. When it is finally time for our final exit I would like to look back and feel good about what we made of us and out of everything that made up our life, including this injury. I cannot do it without you. I cannot do it if you hate me for the way being injured has affected me and our life together. Please try not to be bitter in grief. That would crush me.
Please don’t reject me. There is little I can do without you, without your determination to not give up. Take good care of us and of yourself. I need you very much, especially now.

Your Wounded Brain

©1996 Stephanie St. Claire


Married to a Brain Aneurysm/AVM Survivor

Written by: Joe Niekro Foundation Board Member/Patient Advocate and Brain Aneurysm Survivor, Kimberly Chapman

Rarely do couples foresee or imagine a brain aneurysm/AVM in their future when they commit to “for better or worse, in sickness and in health, til death do us part”.  Yet, it is estimated that 6 million people in the US have a brain aneurysm with over a quarter sustaining severe brain deficits.

Nothing can be more physically and emotionally demanding and burdensome than the trials a spouse faces once their partner is diagnosed with an aneurysm/AVM.  Spouses, more than any other member of the family, are often confronted with the most difficult issues. When a partner becomes brain injured, roles and duties within the family structure are often permanently changed.  Non-injured spouses are often perplexed to figure out methods to resolve ways to maintain income, family issues, their own needs, household management, and conflicts over medical care and treatments.   It is not uncommon for spouses who’ve become caretakers to feel like their marriage has altered drastically since their partner incurred a brain aneurysm/AVM.  Traumatic or severe brain injuries can cause a great deal of stress and disruption to marriage. When a partner becomes a caregiver to the other, they often feel like they are now in an unequal marriage with resentment arising from both sides.

The cognitive and behavioral changes associated with brain aneurysm/AVM alter the survivor, as a person and a partner. It’s not unusual for the survivor to have new personality traits, anxieties, limitations, mood variations, frustration tolerances, and lack of self-control; which only further complicates the situation.  Spouses become surprised by how these changes in the survivor will alter the status of the marriage altogether. These changes have led many spouses to state they feel like they are “married to a stranger” or not married to the person they fell in love with. Often the non-injured spouse is left trying to figure out how to incorporate their partner into the already well-established family structure.  Sometimes consequences of the brain injury require the survivor need supervision and too often the spouse is forced to take on a parental role in which discomfort and tension is felt by both partners.  Some spouses accept the role of caregiver and are willing to surrender the previous role of equal partner within the marriage.  But the task of coping with the role of caretaker is a lonely and challenging one.

Way too often, when a brain aneurysm/AVM survivor returns home from the hospital, the spouse doesn’t fully understand how much time and energy they will be spent playing the role of caregiver. Nor are they equipped with enough information about the long-term effects of brain damage.  It can go unnoticed by extended family members, the amount of dependency placed on the non-injured spouse.  They rarely see the sacrifices made by the spouse to help their loved one make a better recovery or enjoy a better quality of life. It is not uncommon for very little support and assistance to be offered by outside family members, which result in a strained relationship between the caretaking spouse and family over the lack of assistant they receive.

Spouses of the survivor will elude get-togethers with couples they once socialized before the injury occurred.  Reluctance to place the injured spouse in social gatherings could be due to the survivor’s irregular or embarrassing behavior.  Over time, those once considered to be “close friends” might begin to migrate away.  A woman in our online forum stated, “I’m married, but since my husband’s behavior can be similar to the ups and downs of a roller coaster, the invites from our friends stopped long ago.”  Isolation and loneliness becomes an issue for both spouses in the marriage.  The non-injured partner must now make an effort to find sources of social connections for both partners.

In any marriage, when a person takes on new responsibilities or has to learn how to handle new duties, they will experience higher levels of stress.  Partners to brain aneurysm/AVM patients have significantly more responsibilities and find they have less and less time for their personal interest.  Neglect of self is a primary issue with caretakers that will lead to unhealthy physical and mental conditions.  Eventually, emotional exhaustion can occur which is known to develop into compassion fatigue.  To stay healthy and happy, every spouse who is married to a survivor needs to seek assistance from the caregiving responsibilities.  Understand that reaching out and asking for help is not a sign of weakness.  Nor does it mean that you don’t care or fully love your spouse.


Helpful services such as in-home health aides or personal care assistants can provide the spouse with respite from the caretaker role. In-home healthcare professionals can provide various services to the family of a brain injury patient. Spouses who receive support and assistance will find that they have more time to enjoy personal interest and will see their stress levels and tension decrease, lowering their chance for burnout.

Never underestimate the power of a support group. As most hospitals and social workers will suggest, joining a brain aneurysm/AVM support group is a fantastic way for both spouse and survivor to have a social outlet to share their stories, experiences and thoughts with others going through similar situations.  Not only are they a means of getting peer- to-peer support, but they are full of resources to find additional information about brain injuries.   These meetings are fantastic ways to voice concerns or seek new methods of coping.

Support and assistance can be found by building relationships with the survivor’s family.  Members of the family can contribute breaks from caregiving for the spouse.  This also can be a way for the family to build the relationship with the survivor and remain active in their life.

Programs provided by the National Disability Rights Network can help with such services as health care, transportation, personal decision-making and Social Security disability benefits. Referral services within this organization can help people with brain injuries find solutions to problems involving education, discrimination, and employment.  To find out more about programs under this agency contact, visit or call (202) 408-9514.

Brain Injury Association of America (BIAA) or the Brain Injury Alliance are national programs with state affiliates. These organizations can help in providing information, education and support to individuals, families and professionals affected by a brain aneurysm/AVM. To locate your local chapter for assistance visit the Brain Injury Association of America at  Or the Brain Injury Alliance at

If you are one of the 6 million people in the US who have a brain aneurysm/AVM or a spouse to a survivor, please visit The Joe Niekro Foundation online forum at This closed online group consists of people from across the globe coming together to support one another, share stories and feel welcome in a safe environment where they are not judged and can simply be themselves.  You’ll find that you are not alone and there is a huge group of people faced with similar situations just looking for people like you to connect with.

And please mark your calendars for It’s A Brain Thing…It Could Happen to You…our nationally produced online radio show designed to speak to brain injury patients from all parts of the world.  We feature guest speakers, answer calls & questions and discuss how to cope with the challenges that come along with a brain injury.  Join us the first Monday of every month from 5:00 p.m. to 7:00 p.m. (Pacific Coast Time) on  To listen to our most recent show of, click here or to find out more information on The Joe Niekro Foundation, please contact us at or visit or website.

Remember, life is a marathon, not a sprint and no matter what challenges we are presented, with a strong support system – WE CAN MAKE IT THROUGH ANYTHING!!!!



DEPRESSION – Series Continuation of The Grieving Process

Over the past few weeks, we have been going through a series called The Grieving Process in which we have been walking you through the various stages of grieving.  Today, we bring you Part 3 – Depression – a feeling we have all had at one point or another.

We hope you have enjoyed this information and encourage you to share this with others.    Thank you for your continued dedication to The Joe Niekro Foundation.   Want to connect with other brain aneurysm and AVM survivors across the globe???  Be sure to visit our online support forum and be instantly surrounded by thousands who can help!

“Depression is the inability to construct a future.“– Rollo May

“There are wounds that never show on the body that are deeper and more hurtful than anything that bleeds.Laurell K. Hamilton

“Depression is a prison where you are both the suffering prisoner and the cruel jailer.”- Dorothy Rowe

In the general population, it is expected that 6 out of a 100 people experience a significant depression over the course of their lives. However, researchers state patients who’ve experienced a traumatic brain injury are 10 times more likely to suffer bouts of severe depression.  Depression following a brain injury is the most prevalent psychiatric disorder with some reports stating 52% of patients will experience depression the first year and an increase of 61% of patients within 7 years. Researchers do not know when depression is most likely to occur after a brain injury, but most agree that patients will see the beginning stages of depression within the first year.  More than half of the people with a brain injury who are depressed also experience significant and high levels of anxiety.

Depression can be more than feeling sad. It is normal for someone who has had a brain aneurysm or AVM to feel saddened by the problems caused by these conditions.  For some survivors, feelings of sadness can extend beyond the normal.

Signs of Depression

  • Feeling down, depressed or sad most of the day
  • Changes in your sleeping habits, such as sleeping poorly or sleeping more than usual
  • Losing interest in usual activities such as favorite hobbies, time with family members or activities with friends
  • Increasing your use of alcohol, drugs or tobacco
  • Not eating as much or eating more, whether or not you are hungry
  • Strong feelings of sadness, despair or hopelessness
  • Thoughts of suicide
  • Lack of concentration or motivation

Having depression after a brain aneurysm or AVM is a painful and emotional experience, but it also compounds many of the challenges patients face afterwards. Depression is an important problem due to its effects on health, productivity and quality of life.  Depression can interfere with an individual’s ability to achieve rehabilitation goals and reach long-term independence.

Effects Depression Can Cause in Brain Aneurysm/AVM Patients:

  • Result in poorer rehabilitation outcomes
  • Reduced activities of daily living
  • Increased experience of failure
  • Increased stress
  • Reduced employment
  • Lead to more frequent divorce
  • Reduced social interactions
  • Increased sexual problems
  • Reduced life satisfaction
  • Result in poorer health-related quality of life

Many different factors contribute to depression after having a brain aneurysm/AVM; and these vary a great deal from person to person. In fact, even the level of depression will vary depending on how significant the injury was. Some survivors can have problems adjusting to their new “changed” lives as they become more aware of the issues or deficits they are living with.  As their insight to their condition grows, they are more likely to become irritable, anxious or easily frustrated.  Emotional and behavioral changes make it difficult for survivors to get along with others and puts strain on personal relationships.

Factors for Depression

Physical changes occur in the brain after an injury – Depression may result from injury to the areas of the brain that control emotions. Changes in the levels of certain natural chemicals in the brain, called neurotransmitters, can cause depression.

Emotional response to injury – Depression can arise as a survivor adjusts to living with a disability or starts to grieve for their life once lived before the brain aneurysm/AVM.  Patients will have emotional reactions to their physical issues, loss of friends, reduced activities or poorer health. A patient may be grappling with questions such as “why is this happening to me?” “how can I cope with a downward spiral in my ability to function?” and “what will happen to my family if I can no longer take care of them anymore?”

Factors unrelated to injury – Some people have a higher risk for depression due to inherited genes, personal or family history and other influences that were present before the brain injury.

It is important to realize that there are different kinds of depression and that no symptom of depression should be taken lightly. Of particular concern is a type called “major depression” and is characterized with symptoms more intense or severe. Individuals with major depression may think about suicide, have a plan for suicide or successfully complete suicide

Individuals who have seizures as a medical consequence of a traumatic brain injury are at risk for developing depression.  A seizure occurs when there is a temporary electrical imbalance in the brain. A person having a seizure can experience uncontrollable body movements, heightened or decreased sensations and varying levels of awareness. Survivors with seizures will report that they feel fearful about the uncertainty of having a seizure.

These individuals experience greater amounts of depression, anxiety, and low self-esteem than that of the general population.

Depression after having a brain aneurysm/AVM is not just a difficult and painful emotional experience, but it compounds many of the challenges survivors face afterwards. Not all brain aneurysm patients are alike, depression symptoms and symptoms of a brain injury (deficits) can appear separately and at different times.  The symptoms of depression and a brain injury can appear to mirror one another.  The symptoms can overlap and be complex, making them difficult for some doctors to distinguish.  Not all patients may link their symptoms to a brain injury or recognize what they are experiencing.  Such as, “is it common for brain aneurysm survivors to feel fatigued easily and have a much more difficult time concentrating?” Depression will compound these issues and problems.  Patients with both a brain injury and depression have greater difficulties in cognitive skills. This can lead to problems in rehabilitation because the ability to think and concentrate is essential to learn new skills, make decisions and solve problems.

A brain injury is an invisible injury and depression is one of the many invisible disorders in which recovery can be further threatened. Having a brain aneurysm or AVM can be devastating to a person’s life and when adding depression, the recovery process can be further hindered.  It is important that survivors and caretakers remain vigilant about the possibility of depression, as well as committed to taking steps to treat it if it should arise. If you have symptoms of depression, it is important to seek professional help as soon as possible, preferably with a health care provider who is familiar with brain injuries.  Family members, friends and caretakers of brain aneurysm/AVM survivors should monitor their loved ones for signs of depression. Depression symptoms should be discussed with a physician or healthcare provider and you should ask for a referral to a neuro-psychologist who specializes in treating depression in brain injury patients.  Other properly trained professionals include psychiatrists, psychologists or social workers.  Depression is a medical problem and it is best to get treatment early to prevent needless suffering and worsening symptoms. By accepting depression as just another obstacle to overcome in the road to rehabilitation, much of the fear and stigma surrounding this condition will be removed.

For more information on understanding depression and treatment options, visit the following links:

Depression After a Traumatic Brain Injury

Depression After a Brain Injury – A Guide for Patients and Their Caregivers

Depression After a Traumatic Brain Injury

Stay tuned for Part 4 of The Grieving Process!


July 2018
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