TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘depression’

Brain Injury Resources CTE & Football (chronic traumatic encephalopathy )

Brain Injury Resources . . . CTE & Football

presented

by

Donna O’Donnell Figurski

 

Brain th-2The regular season of the NFL (National Football League) begins this week. Although American football can be exciting, we in the brain-injury community are very aware of the havoc that both concussive and sub-concussive head impacts play not only on the brain health of the pros, but also on the brain health of college and high school players (1). We are especially sensitive to the high risk of the trusting and still-developing young players in Pop Warner leagues (2, 3).th

There has been a growing public awareness of the brain disease CTE (chronic traumatic encephalopathy), which can develop from hits to the ctehead and lead to “memory loss, confusion, impaired judgement, impulse control problems, aggression, depression and progressive dementia.” Some players have retired early (4, 5). Former players have sued or are suing the NFL (6). There is still a great deal of ignorance about CTE, but much research has been done and is being continued vigorously. This article tells us some basic facts that we should know.

Here is a brief outline from the article:

“Concussions in the NFL are more widespread than we thought

“An estimated 96 percent of deceased NFL players had CTE

“Researchers are working on a test for living players

“The NFL has donated $0 to this important new brain injury study”

I urge you to read the article for the details.

 

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Another Fork in the Road: Depression, Suicidal Thoughts, & Brain Injury

Fork in the Road copy

“Another Fork in the Road”

This category is an extension of my radio show, “Another Fork in the Road,” which airs at 5:30 pm (Pacific Time) on the 1st and 3rd Sundays of each month on the Brain Injury Radio Network. (See the “On The Air Show Menu” category for a list – with links – of all my shows, which are archived and thus always available.)

On the 1st Sunday of each month, I host a panel of brain injury survivors, caregivers, and/or professionals in the field. On these shows, my panelists and I examine topics pertaining to brain injury.

On the 3rd Sunday of each month, I host guests – brain-injury survivors, caregivers, or professionals in the field.

Since I spend countless hours in preparation for each show, I decided to share the knowledge that I gather with my readers.

Another Fork in the Road

Depression, Suicidal Thoughts, & Brain Injury

by

Donna O’Donnell Figurski

canstock16714646Depression is a state of mind that can cause long-term mental mood disorders. Everyone experiences sadness and unhappiness at times. That’s normal. Those feelings happen when something sad enters people’s lives or they experience grave disappointments. Normal life-events, like a pet dying, being passed over for a promotion, going through a divorce, or experiencing money problems, can trigger feelings of sadness. Usually with time, those feelings pass, and people move on.

But when there are unrelenting feelings of despair, usually coupled to at least one of the many telltale signs and symptoms of depression, then drastic measures need to be taken. Depression is devastating and can affect every aspect of daily living. Depression is pure agony resulting from desperation and the need to escape. It is constant; there is no relief. Unlike sadness or unhappiness, depression settles in to stay. It can last weeks, months, or even years. If not treated, depression can be deadly. But if a person seeks treatment, there are ways to diminish, and possibly even cure, depression.

I have never been diagnosed with clinical depression. Technically, I have never been depressed. But I have occasionally complained that I am “depressed” – using that word. I think everybody does. It’s a term we throw around too easily. When I’m feeling blue or down, I might say, “I’m depressed.” But I’m only experiencing a feeling of unrest or unhappiness for a short time. I have learned that there are ways for me to alleviate these uncomfortable and unwanted feelings with a few easy activities. I find if I remove myself from the environment that I am in, I can change my emotions. For example, if I am home when these feelings overwhelm me, I often will go to the store or run errands. Sometimes I will turn on uplifting music or talk to a friend. Exercise can usually jar me out of my doldrums. While I can change my mood when I’m sad, a truly depressed person can do so only with great difficulty.

Depressed GirlSome signs and symptoms of depression are very intense feelings of unhappiness, anxiety, worthlessness, helplessness, lack of self-esteem, and/or lack of self-confidence. Depression can seriously impact sleep and eating habits. It can lead to a significant loss of energy, focus, or attention. A prolonged feeling of panic is also a sign of depression. A lack of interest in taking care of health needs may be indicative of depression. A person may start to withdraw from his or her family or friends or from the things he or she once enjoyed – essentially quitting the world. Defying fate (for example, doing things that are risky or death-defying, such as swimming too far out into the ocean or walking too close to the edge of a cliff) is a relatively obvious symptom, but what about overeating,Depressed Man overuse of alcohol, or drug use? If a person is talking about suicide or is making statements, such as “Everyone would be better off, if I weren’t here,” “I can’t take this anymore,” or even more blatantly, “I wish I were dead,” that person may be sending up a red flag. It may be the person’s way of begging for help.

Depression is not discriminating. It can happen to anyone. Actress Winona Ryder, Princess Diana, former Pittsburgh Steelers quarterback and four-time Super Bowl winner, Terry Bradshaw, and Barbara Bush, wife of a former United States President all suffered from depression. And the list goes on and on. Sometimes, people hide their depression, as with actor and comedian Robin Williams. I think we were all broadsided when Robin committed suicide in August 2014. Though Robin’s close friends saw signs of his depression, the rest of the world saw only a very accomplished actor who always had a smile on his face. His great acting skills spilled over into his personal life, and his greatest role was “the great deceiver.” I can’t imagine the pain his smile must have been covering up. Robin sought help and willingly admitted himself to treatment centers, but unfortunately that was not his salvation.th

Former San Diego Chargers linebacker and Hall of Fame member, Junior Seau, was deeply affected by depression after years of collisions with other players. Years of playing football ultimately damaged Seau’s brain and led to his suicide in 2012. Chronic traumatic encephalopathy (CTE) was the unequivocal diagnosis by the National Visger, GeorgeInstitutes of Health (NIH) from the study of Seau’s brain. Former San Francisco 49er, George Visger, lives daily with the complications of brain injury. (You can hear George’s story on my August 16, 2015 show. You can also read more about George on this blog.) Another former football player, Kyle Turley, who played for the New Orleans Saints, the St. Louis Rams, and the Kansas City Chiefs is Kyle Turleysuffering the ravages of brain injury and depression. (Kyle will be a guest on my show on October 18, 2015. He will discuss his life with brain injury and how he is redefining his new world.)

Depression is not an unfamiliar state for those who live with brain injury. And it’s not surprising. Brain injury turns lives completely upside down. Usually it’s difficult, sometimes impossible, for survivors to realize the extent of the damage done to their brains. Many times they are not the same person they were before the injury, and they have to face their limitations – cognitive, behavioral, emotional, and/or physical. Thinking back on a pre-brain-injury life and being aware of what was stripped away can easily lead someone to depression – and even to suicidal thoughts.

One way to help deal with depression after brain injury is to accept the “new” person who a brain-injured person has become. I have noticed in the Survivor SPEAK OUT! interviews on this blog that many survivors have stated that, once they accept their “new” persona, they have found more happiness. That isn’t to say that everything is okay. That isn’t to say that the brain-injured persons have given up. It’s just that the survivors have become more accepting of the persons they have become, and they will take those new persons to the limit.

With her permission, I want to share the story of a friend of mine who used an additional method to help with her depression. Cat Brubaker was enjoying life as a young woman. She had completed college, and she was working in a position that she enjoyed. Then she became the victim of two brain injuries. These injuries left Cat feeling helpless and hopeless. With Cat confined to her home, the walls closed in on her, and she felt desperate. Cat’s loss of independence, the decline of her longtime relationships, and finally the death of her mother were too much, and she fell deeply into depression. She eventually entertained thoughts of suicide. But Cat found a way out of her trapped box when she discovered the joys of her recumbent cat-triketrike and met a new friend, Dan Zimmerman, a stroke survivor and also a recumbent trike rider. Cat and Dan set off last summer to cross the USA on their trikes. They rode their trikes from Anacortes, Washington, diagonally across the country to Key West, Florida – a trip that took them five months and was 5,400 miles. I’m not saying that everyone needs to get a trike and travel across the country, but I am pointing out that perhaps finding a new purpose in life can help shove depression into the background. The recumbent trike was the answer for Cat. Zimmerman, Dan Survivor 071015Riding her recumbent trike is something that Cat thoroughly enjoys and relies on for her mental health. Cat has made many new friends by riding her trike. She has even created a foundation, called “Hope for Trauma,” to help other brain-injury survivors. Cat’s story shows that, though people may feel the total helplessness and hopelessness that accompanies depression, it is sometimes possible to find a way to redirect their lives to find happiness.

There are other methods that may help alleviate the feelings of depression. Art Therapy also helps some folks connect with their inner selves. It usually also requires complete concentration, which can take the focus off the unwanted depressive feelings. Animal Therapy guarantees that one is never alone. Pets usually provide unconditional love, which a person suffering from depression could certainly use.

Technically depression is a chemical imbalance in the brain. It is not easy to turn off. So what can be done about depression? Two different types of health-care workers can help immensely: psychologists and psychiatrists.

PsychologistBoth psychologists and psychiatrists use psychotherapy, often referred to as “talk therapy” or “counseling.” Psychotherapy helps patients with mental health issues sort through their feelings, moods, and emotions. Through talk, a mental-health-care provider can guide or retrain a person’s mind to approach existing problems differently. The brain can actually change physically by talking about a problem. Psychotherapy can be effective with many different types of mental-health challenges, including anxiety, personality or mood disorders, problems with eating or sleeping, and various addictions. It can also address coping with life-altering situations, such as the ones that many brain-injury survivors live with daily. Realizing that they are not the persons they were before their brain injury is a major problem for many survivors. Not being able to return to the former life-style and having to redefine oneself can be devastating to a person who survives a brain injury. Often a brain-injured person wonders why he or she was saved. These kinds of thoughts can easily lead to depression.

Psychotherapy does not use medication. Both a psychologist (usually a Ph.D.) and a psychiatrist (an M.D.) use psychotherapy. A psychiatrist has been trained in the biology of the body and in neurochemistry, while psychologists focus more on the behavioral aspects of the person. Some patients may need stronger medical Doctor Womanassistance. Because a psychiatrist is a medical doctor, he or she can prescribe medication. Medications are getting better. The best ones are more targeted and thus have fewer side effects.

Research is very active and is greatly advancing our knowledge of depression. A recent NewsBit on this blog (“Depression Reversed in Mice”) reported that basic research has resulted in the curing of depression in mice. Memories are tagged with positive or negative feelings. Scientists have been able to activate specific neurons to induce a memory with its associated positive feeling to overcome depression. It will probably be a couple of decades before this kind of therapy will be ready for humans.

If you want to learn more about depression, the Internet is a marvelous tool for gathering information. There are countless sites, many very reputable, that examine this topic. Simply Google “brain injury” and “depression.” I can guarantee you will learn more than you could imagine.

Of course, if you or someone you know needs immediate help, don’t waste time on the web. Call 9-1-1 immediately.

There are also many depression and suicide hotlines. Here I name a few in the US that I found on the web. I really do not know anything about them, so I cannot endorse them. But I suggest that, if you have concerns about depression or suicide, you look into them in advance of any crisis.

Hotline-ICON-XS_optiHotlines

National Suicide Prevention Lifeline
800-273-8255
(suggested by the Mayo Clinic)

The Samaritans 24-Hour Crisis Hotline
212-673-3000

Crisis Call Center
775-784-8090

Most states in the US have mental health hotlines. Here is a site that has links to most state hotlines.

Suicide Hotlines

Depression is a common affliction of brain-injured survivors. It needs to be recognized as a serious and devastating illness, not as something one can “work through” himself or herself. The good news is that help is available. If you are suffering from depression or if you know someone showing signs of depression, I urge you to use it.

Listen to the October 4th show on depression.

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Survivors SPEAK OUT! Kristin Russo

Survivors  SPEAK OUT!  Kristin Russo

by

Donna O’Donnell Figurski

Russo, Kristin December 2014 After

Kristin Russo – Post-TBI Dec. 2014

1. What is your name? (last name optional)

Kristin Russo

2. Where do you live? (city and/or state and/or country) Email (optional)

Annandale, Virginia, USA

3. When did you have your TBI? At what age?

July 22, 2013 – I was 28.

4. How did your TBI occur?

My TBI was caused by a collision with a tractor-trailer. Read about it. “Kristin Russo accident.”

5. When did you (or someone) first realize you had a problem?

It was realized about 2-3 days into my stay in the ICU (Intensive Care Unit).

6. What kind of emergency treatment, if any, did you have?

I have no memory of the accident, the month in the hospital, and even the first 5-6 months at home under 24-hour care.

7. Were you in a coma? If so, how long?

Yes. My coma was induced.

8. Did you do rehab? What kind of rehab (i.e., inpatient or outpatient and occupational and/or physical and/or speech and/or other)? How long were you in rehab?

I had occupational, physical, speech, and recreational therapies for a month as an inpatient. I had therapy as an outpatient until May 2014 when all but physical therapy ended. I’m still in physical therapy for physical injuries.

9. What problems or disabilities, if any, resulted from your TBI
(e.g., balance, perception, personality, etc.)?

I have moderate to severe diminished visual memory, mild to moderate decreased attention span, diminished executive function, and mildly diminished speech and language function. Those are the significant findings as per my neurological addendum. It was also noted that I am likely to have significant permanent neurocognitive dysfunction due to the TBI. This problem with the physical brain injury is further complicated due the fact that I have significant PTSD (post-traumatic stress disorder). I have a college degree, yet I had to learn how to do things as simple as double-digit subtraction. My entire education has been wiped away. Since I graduated with honors, it was easy to get accepted to Liberty University. But, I can’t retain information anymore, so I’m not sure if I’m going to go back to try and learn everything all over again. My neurologist has diagnosed me with ADD (attention deficit disorder) due to the TBI. I’m not allowed to use anything hot without supervision, etc.

10. How has your life changed? Is it better? Is it worse?

Some things are better because I now have an excuse for being directionally challenged or for when I mess up (haha). 😉 Things are worse because I am dependent and I HATE IT! (I am an independent girl.) I was such an intelligent woman. I was still paying off my degree when the accident happened. Not being able to use ANY of the knowledge really made me unhappy. Not being able to work has been horrible because that is all I have ever known. I have been working since the day I turned 14. (My first day of work was on my 14th birthday). I worked at the same place until I graduated high school and went to college. I hate that I can no longer drive. I miss being able to do what I want to do when I want to do it. 😦 I live about eighty miles from where I grew up, so it’s not often that someone comes to visit me. The accident caused me to lose my family because my own father was stealing my pain pills for his sick addiction. I’ve lost some of my friends because I’m a totally different person personality-wise. I’m 100% honest, and I have dedicated my life to Jesus Christ. The girl in the accident died. She wasn’t the best wife. (I’d give more details, but those things are better kept between husband and wife. 😉 ) But, that’s why my accident happened, and I know it. God was showing me what was in front of me, and the same, for my husband. God was bringing us closer together, and that’s exactly what my accident did. So, that’s what I do like about the TBI. Another thing that I like about the TBI is that I don’t remember the accident or being in the hospital or even the 5-6 months after it. I also don’t remember my surgeries up to July. I remember the ones on Black Friday and December 1st. But, yeah, the girl I was before was a girl who drank a lot and went to clubs and acted like she was a single 21-year-old female. Since I’m not her anymore, I’ve lost a couple friends who were just like that girl. I don’t need those girls anyway!

11. What do you miss the most from your pre-TBI life?

I miss being able to drink alcohol sometimes – at least to drink socially. I miss being able to drive. I miss being able to do what I want when I want. I miss working. What I do now is to constantly go to appointments – it’s nuts! I am still in physical therapy – several months post accident. I just got yet another MRI scan (magnetic resonance imaging). I had surgery number eight on January 27th. I began speech therapy in January since insurance started paying again. I miss sleeping like a normal person. I miss being skinny. (I was a size 2 when I was married on July 7th, 2011, and I’m not that size anymore.) I hate being on so many damn medications. I loathe people’s not understanding invisible disabilities. I also have CRPS (complex regional pain syndrome) that was caused by the accident. It’s a chronic pain disease that has no cure.

12. What do you enjoy most in your post-TBI life?

I enjoy the fact that the Trauma Survivors Network Next Steps program taught me to find the positive in everything, so I do. When my legs hurt, I remind myself that I shouldn’t have any, so I thank God for letting me keep my legs! When I have my chronic headaches, I thank God for not making the swelling be so bad that I need to have surgery!

13. What do you like least about your TBI?

I don’t like that I sleep every other day sometimes. I dislike the chronic headaches and the fact that a headache is invisible. I don’t like having memory issues and being confused so often.

14. Has anything helped you to accept your TBI?

God

15. Has your injury affected your home life and relationships and, if so, how?

My husband gets rather upset when I forget that I’m not supposed to use a curling iron, and I fail to remember to turn it off. I no longer speak to my parents – my father makes fun of my TBI and acts like I’m making it up. (A*^#@~! ! I guess that’s what drugs do to ya.)

16. Has your social life been altered or changed and, if so, how?

I don’t really have a social life anymore. Things are so much louder now. People annoy me more. 😦 I have NO filter. I just want to be home with my husband or alone with my dogs. I haven’t watched TV since the accident.

17. Who is your main caregiver? Do you understand what it takes to be a caregiver?

My husband is my main caregiver.

18. What are your future plans? What do you expect/hope to be doing ten years from now?

I’ll be running a photography business. 🙂 And, I better be a mommy to more than just my fur babies!

Russo, Kristin Before Accident

Kristin Russo Pre-TBI

19. Are you able to provide a helpful hint that may have taken you a long time to learn, but which you wished you had known earlier? If so, please state what it is to potentially help other TBI survivors with your specific kind of TBI.

I urge people to try to make a positive out of everything. Depression is so ugly. I wish that I never hit that stage. Having a positive attitude has helped me SOOO much.

20. What advice would you offer to other TBI survivors? Do you have any other comments that you would like to add?

I give back now by volunteering at the hospital where I did my outpatient therapy. I got one of my dogs certified as a therapy dog, and we visit patients. I also visit patients in the trauma unit. My visits help others, and they also help me!

 

Thank you, Kristin, for taking part in this interview. I hope that your experience will offer some hope, comfort, and inspiration to my readers.

(Disclaimer: The views or opinions in this post are solely that of the interviewee.)

If you would like to be a part of the SPEAK OUT! project, please go to TBI Survivor Interview Questionnaire for a copy of the questions and the release form.

(Photos compliments of Kristin.)

As I say after each post:

Please leave a comment by clicking the blue words “Leave a Comment” below this post.

Feel free to follow my blog. Click on “Follow” on the lower right corner of your screen.

If you like my blog, share it with your friends. It’s easy! Click the “Share” buttons below.

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SPEAK OUT! NewsBit . . . . . . . . Changing a Negative Feeling About a Memory

Changing a Negative Feeling About a Memory

newsboy-thThis is exciting, but complicated, basic research. Here I simplify the main experiments. Neuroscientists at the Massachusetts Institute of Technology (MIT) have identified a neuronal circuit in mice that associates a positive or negative feeling with a memory. In a tour de force of molecular studies of the brain, the researchers conducted experiments that provide considerable hope for future therapy in humans with syndromes like PTSD (post-traumatic stress disorder), anxiety, and depression. The scientists were able to turn a memory associated with a negative feeling into a memory that has a more positive feeling and vice versa.

(How relevant are studies done in mice? The mouse is an accepted animal model for humans. You might not expect it, but mice and humans are very similar genetically. The DNA sequences of the mouse and human chromosomes are known. Many mouse genes have sequences similar to human genes. They both code for proteins that have similar structures and do the same things. Because mouse and human genes are so similar, much of the underlying biology of mice and humans is also similar. Still there are differences. So until something has been shown to be true in humans, a scientist’s conclusions must be conservative. Most of the time, however, much is learned about humans from the mouse. It has become a convenient initial model for humans.)

The researchers at MIT engineered a virus that infects the mouse brain. They specifically infected either the hippocampus, the part of the brain that contains neurons that store contextual information about a memory (for example, the place), or the amygdala, the part of the brain that contains neurons that put a positive or negative emotional tag onto the memory. The engineered virus is essentially a dead-end. It doesn’t reproduce or harm the cell, but it does have an ability to cause infected neurons to make a light-sensitive protein – but only when the neuron is actively making a new memory. In this way, the researchers were able to make neurons involved in making a new memory sensitive to light. By implanting an optical fiber in the part of the brain that contained the light-sensitive neurons (i.e., in the hippocampus or in the amygdala), the scientists could use light to turn on these memory-making neurons at will. The general technique of using a light-sensitive protein to activate a cell is called “optogenetics.” When the light-sensitive neurons are activated by the researcher, the mice recall that memory with its associated positive or negative feeling. To make a memory with a positive feeling, male mice were allowed to mix with female mice. To make a memory having an associated negative feeling, mice were put into a special cage and given a mild electrical shock. For both kinds of memories, the neurons involved could be turned on by light.

The researchers then took the mice and put them into a cage with two compartments. When a mouse with a negative memory explored a particular compartment, the researchers turned on its bad-memory neurons by shining a laser into the optical fiber to activate those neurons. The mice “remembered” the bad feeling and avoided that compartment. When the experiment was done with the mice having a good memory, the mice preferred that compartment. These results were seen only when neurons of the hippocampus were activated. No change in mouse behavior was seen when amygdala neurons were activated. Whereas the amygdala is needed to add the positive or negative feeling to a memory, the researchers concluded that a memory with its associated feeling is stored in the hippocampus.

The researchers then asked if they could change a negative memory into a positive memory and vice versa. They took the male mice with the negative memory and mixed them with females to make a positive memory. When they used light to activate the bad-memory neurons, the positive feeling from mixing them with females dominated. Unexpectedly, those mice did not suddenly avoid the females when the researchers activated the bad-memory neurons. When the mice were put back into the cage with two compartments, they went randomly into both compartments, even when the researchers activated the bad-memory neurons with light. The bad memory was no longer causing them to avoid one of the compartments. The negative tag had been supplanted by the positive feeling. What happened to the first (negative) tag? Was it removed? Was it changed? This question is being investigated. When the experiment was reversed, the scientists found that the positive feeling became more negative.

This new research gives a molecular explanation for why emotion associated with a memory can be changed – the basis of current therapy. Dr. Susumu Tonegawa, who directed the research, believes that the amygdala has two kinds of neurons: neurons that can tag a memory with a positive feeling and other neurons that can tag a memory with a negative feeling. He wants to identify those two populations of cells and understand how they work at the molecular level. Such information will be valuable for the development of new therapies and drugs. (Full story)

(Clip Art compliments of Bing.)

Surviviors SPEAK OUT! Marie Cooney

SPEAK OUT! – Marie Cooney

by

Donna O’Donnell Figurski

 

Cooney, Marie Sailboat

Marie Cooney – 1st Sail post-TBI

1. What is your name? (last name optional)

Marie Grace Cooney

2. Where do you live? (city and/or state and/or country) Email (optional)

Saint Paul, Minnesota, USA

3. When did you have your TBI? At what age?

June 29, 2005, at the age of 44

4. How did your TBI occur?

I had been a professional stagehand for approximately 20 years. We were setting up for a Carlos Santana concert. Years later, I learned that it was a very unusual setup, where two diamond-shaped trusses were to be built onto the stage. But when they were flown out, they extended over the audience. A co-worker had just yelled that it was a very dangerous situation. As I crossed from the stage-left side of one truss to the other side towards center, I noticed in a flash that there wasn’t any stage below me. A friend told me that I tried to cover my head protectively as I flew off the edge. I landed head first on the cement floor of the Xcel Arena, and many people thought I was dead. Another friend jumped to my aid to slow down the profuse bleeding. When my body went into seizures, those who witnessed the injury knew I was not dead. Thank God, the paramedics arrived within minutes, and I was transported to Regions Hospital’s Trauma Center.

5. When did you (or someone) first realize you had a problem?

Apparently I yelled out a horrible cry, which got the attention of everyone within earshot. My friend Colette, who tried to warn me of the imminent danger, closed her eyes and prayed, “Please God, don’t let Marie die!” Years later, my friend Michael told me that he heard my head crack like a bowling ball being smashed on the ground and that I “danced the Mariachi without the music.” My friend Melissa jumped to my aid to slow the bleeding. Aaron assisted her when I started to come to and tried to get up. Jeff, Chip, and other stagehands told me not to move – that I was hurt. I later learned some were afraid I might have broken my neck or injured my back. Matt was the first stagehand to reach 9-1-1 on his cell phone, though I understand that many others tried simultaneously. I do NOT remember any of this, though I have been told by friends that they will never forget.

I realized there was a serious problem when I opened my eyes at the hospital and saw my friend Sherri. “What are YOU doing in a hospital?” I asked. “No, no, no!” she corrected me. “I’m here to get your keys!” “Why?” I asked. “I need to take care of Tucker….” “You’re not going anywhere!” she explained. As I touched my head, I felt tremendous pain and saw blood on my hand and myself. I realized I was the one in the hospital!

6. What kind of emergency treatment, if any, did you have?

I was transported to the Regions Hospital Emergency Room. There I was stitched up; they did scans of my head; and I had X-rays taken of my neck, back, and hands. I was then transferred to their Trauma Center, where a nurse was always in my room. Unfortunately, I was only kept there for two days because I seemingly made sense, which I don’t remember, and I could go to the bathroom by myself. I also think they might have thought I lived with a person – instead of my dog, Tucker! Melissa and Sherri kept asking if they could call my Mom. I was too scared to tell them that all I could remember was the picture of the rotary-dial phone we had when I was a child and the number. I could not remember where my mother or either sister lived. I didn’t know I had such a thing as a cell phone and hoped I’d figure it out when I got home. I kept repeating over and over, “I had a previous head injury. My records are at Noran and Abbott.” Then I’d fall asleep again, only to tell the next person the same thing at the next location.

7. Were you in a coma? If so, how long?

No

8. Did you do rehab? What kind of rehab (i.e., inpatient or outpatient and occupational, physical, speech, or other)?

I wish I had done rehab at Regions Hospital. But when the doctor wrote orders for physical therapy, I asked if I could go to some place closer to home – to where I could walk. I wish he had had the sense to tell me I had a serious injury and needed a hospital familiar with TBIs. I also went to counseling in the town in which I lived. I eventually went to a work hardening program, where they evaluated both my physical and my cognitive conditions. As an outpatient, I saw a neuropsychologist and speech therapist at Regions. I was also treated by a neurologist, physiatrist, migraine specialist, urologist, optometrist, psychiatrist, neuro-ophthalmologist, and various counselors who included EMDR (Eye Movement Desensitization and Reprocessing) and PTSD (Post-Traumatic Stress Disorder) therapy techniques and DBT (Dialectical Behavior Therapy). Eventually I was a resident at Courage Center in Golden Valley, Minnesota, as part of their Chronic Pain Program. A number of months later, I also participated in the Community Reintegration Program (for people with brain injuries) for only four of the typically six-month program because of medical denials by State Fund Mutual, the workers’ compensation insurance company.

How long were you in rehab?

I am nine years post-injury. I see my neurologist and my psychiatrist   approximately every six months. I also see my neuro-ophthalmologist as needed for optic-nerve injections for eye pain.

9. What problems or disabilities, if any, resulted from your TBI (e.g., balance, perception, personality, etc.)?

I have severe sensitivity to lights, sounds, crowds, and chemical smells. A visor and dark amber, Churada-framed, protective eyewear are essential parts of my daily wardrobe. I carry various types of earplugs to dampen what is called “auditory discrimination” – the inability to filter out foreground and background noises. I’ve peed in my pants in the presence of Clorox. I have been told this and the extreme nausea could have been the results of petite seizures. I am, or have been, on various anti-seizure, anti-pain, anti-depression, and anti-anxiety medications. I have also been treated for migraines. My balance has been helped and my pain has been lessened by pool therapy. I have experienced many emotional changes throughout my recovery process. I would consider myself among those with heightened emotions post-TBI, as opposed to having dampened emotions. Greater self-awareness and an ability to deal with fluctuating emotions have come with time.

10. How has your life changed? Is it better? Is it worse?

At first, “everything” was worse. I wanted the “old” me back, at least some of me. I didn’t ever want to be a stagehand again. Then I wanted to. Then I was afraid it could kill me. I thought the oversensitivity ruined “everything.” I used to sail competitively. I wanted to be able to sail, but I knew a knock to my head could kill me. I wanted to move back to the East Coast, where I was raised, but my medical treatment and my legal help were here. I was a ship without a rudder, lost at sea, and escalating depression was overwhelming me.

Things have gotten better, as I have learned to use compensatory strategies to live my life as it is now. I have had many supportive people who have helped me with many aspects of my life. “I have reclaimed my life!” I proclaimed one day. “Work comp no longer owns me!” I told my counselor, “I bought a sailboat!” Although I didn’t return to competitive sailing, this was an extremely important step for me. In ways I was now capable of, I was reclaiming parts of my life that I had loved before. I wasn’t afraid of denials or surveillance by workers’ compensation. I was choosing life for me! And now, I have a wonderful new partner, Nanette, who loves me just the way I am and is supportive in every way, without being “my caregiver.” We care about each other tremendously.

11. What do you miss the most from your pre-TBI life?

  1. Sailing competitively with my friend Steve and others at the Wayzata Yacht Club.
  2. Working in theater, especially running a spotlight and seeing all types of shows!
  3. Friends and family. I missed my nieces growing up. I lost touch with too many friends, until Facebook.
  4. Being “fearless,” not in the sense of being cocky, but rather in being totally comfortable and at ease.
  5. The wonderful sense of spontaneity. Also not being so tired so much of the time.
  6. My dog, Tucker!
  7. The feeling that I could do anything I wanted and go anywhere I liked.
  8. It is hard to be a high-achieving person who is really smart, but who has a TBI and feels so dumb.
  9. I started arguing with people I love. I felt so misunderstood, especially in the first few years.
  10. Writing plays and being active in the arts community, in addition to my theater career.

12. What do you enjoy most in your post-TBI life?

  1. Choosing to sail again and sharing that love with others.
  2. I didn’t know if I would ever have a partner again. Amazingly, I met Nanette! There is hope – even if relationships end.
  3. My dog, Rico, and Nanette’s cats, Shiloh and Hildy!
  4. Making new friends; getting back in touch with people I thought I’d never see again.
  5. Hugs and kisses. Forget formalities! Let me hug you tightly! So many friends have been hugged or have hugged me, now that I have returned to stagehand work in a very limited, but fulfilling, capacity.
  6. Joy in life again – even if it is simpler. (A brush with death makes simple things seem to be much more!)
  7. Renewed relationships with my family, who didn’t understand so much at first. I traveled to Ireland with my Mom recently.
  8. A spiritual awareness that we are not alone. I “experienced” my Dad during my first head injury, even though he had died years earlier. I would not admit this at first, but now I do freely.

13. What do you like least about your TBI?

Extreme hypersensitivity, fatigue, predictably unpredictable days, difficulty making plans.

14. Has anything helped you to accept your TBI?

Time, time, and more time. Rest, rest, and more rest. Others with TBIs. Courage Center friends and staff. A sense of humor. My lawyer, Gerry, who helped put things in perspective when “everything” seemed out of control. Writing a blog for Lash and Associates. Co-facilitating a brain injury support group. Reclaiming scripts.

15. Has your injury affected your home life and relationships and, if so, how?

I lost my housing multiple times. I didn’t know if landlords were trying to get around service animal laws, if my anger was too piqued, or if I lost my sense of diplomacy. Courage Center and HUD tried to help me, but I still had to move, which was a bigger mess each time. Now I can take partial responsibility, but it is really important to know your rights, the laws regarding reasonable accommodations, and anti-discrimination laws. Losing my housing caused extreme difficulties with my family and some close friends. I felt blamed and condemned for things that were not my fault.

Now I live with my partner, Nanette, in Saint Paul. We also have my sailboat in Duluth, where I can sail within the safety of Duluth Bay or out on Lake Superior, depending on the weather and my crew. My relationships with my family have improved with time, and I’m back in touch with various friends. However, I have also lost some friends, which is sad. As Nanette says, “Communication is key!” Try to keep the doors to communication open, no matter what part of the TBI equation you find yourself in.

16. Has your social life been altered or changed and, if so, how?

It is hard to make plans with others. For the best results, they need to understand and accept that I might become extremely fatigued, need to take medications, rest, or even go to sleep. After six years, I have been able to attend some theater shows. I ask people to stay, even if I need to leave, so I can live vicariously through them. Loud music, concerts, dances, and strobe lights are all OUT! Quality time with smaller groups is better than lousy time with large groups. At family events, I plan breaks and rest periods.

17. Who is your main caregiver? Do you understand what it takes to be a caregiver?

I am a person with a Traumatic Brain Injury, and I am my own caregiver. Through others I know, I have learned to understand and appreciate the dedication, love, fatigue, frustration, and various emotions that caregivers also experience. Nanette is someone who cares deeply about and for me, as I also care deeply about and for her. But it is important that we each have some sense of autonomy and a shared life, without Nanette’s being in the role of “caregiver.” Having said that, I must also confirm she is the most understanding, accepting, and supportive person in my life.

18. What are your future plans? What do you expect/hope to be doing ten years from now?

Marie Cooney Playwright

Marie Cooney – Playwright

We laugh about this! I love Nanette, but I absolutely cannot tolerate the Minnesota winters. She has been telling me it’s okay to leave and calls me her “Wandering Pirate Girlfriend.” I finally believe her. I plan to spend as much time as possible doing things we love together, especially attending many smaller theaters and dance productions, which are not as assaulting. I enjoy traveling between Saint Paul and Duluth and will be getting away for at least some parts of the winters. I want to return to being a playwright, to participate in the Playwrights’ Center in Minneapolis, and to travel to wherever the production of scripts might bring me. In ten years? I will be almost twenty years post-TBI. I could be doing almost anything – with rest, as needed!

19. Are you able to provide a helpful hint that may have taken you a long time to learn, but which you wished you had known earlier? If so, please state what it is to potentially help other TBI survivors with your specific kind of TBI.

Don’t be in such a rush to get back to your previous life or move on from your injury. Time, time, time! Take the time you need. Rest, rest, rest! It’s a long road to recovery. Laughter truly is the best medicine. There will be good days, and there will be bad days, and there will be good ones and bad ones again. Stay in the hospital or in rehab as long as you can, and get as much help as you can from the people who really know about brain injuries. (People who say they are “experts” aren’t always telling the truth.) Get a great QRC (Quality Rehabilitation Consultant) who is recommended by your lawyer, not by the workers’ compensation insurance company.  Don’t take it personally – you are in a system that is designed to cut you off as soon as possible. “Powerhouse” attorneys can be “slaughterhouse” attorneys. Get personal recommendations. A great TBI attorney will listen to and respect you, not treat you as someone who doesn’t know anything. Offer reasonable accommodations, as needed. If an attorney won’t work with you, he or she won’t work for your greatest good, so run the other way.

20. What advice would you offer to other TBI survivors?

Get all the help you possibly can from every source possible. A physiatrist or a PMR (Physical Medicine and Rehabilitation) specialist is an important part of your team. If you don’t have one, get one. Keep a sense of humor. Admit when life’s unbearable. Believe that it will get better.

Do you have any other comments that you would like to add?

Cooney, Marie Sailboat 2

Marie Cooney – Skipper – pre-TBI

In our support group, NOTHING IS OFF THE TABLE! Everything is open for discussion, no matter what. Some thing you are afraid to discuss might be the very thing others need to talk about. Take chances. Share all your feelings. Accept tears of sadness and tears of laughter. Both are welcomed and accepted, as is everything in between.

 

Thank you, Marie, for taking part in this interview. I hope that your experience will offer some hope, comfort, and inspiration to my readers.

(Disclaimer: The views or opinions in this post are solely that of the interviewee.)

(Photos compliments of Marie.)

If you would like to be a part of the SPEAK OUT! project, please go to TBI Survivor Interview Questionnaire for a copy of the questions and the release form.

 

 

 

SPEAK OUT! NewsBit . . . Electromagnetic Pulses Correct Abnormal Neural Connections

Electromagnetic Pulses Correct Abnormal Neural Connections

newsboy-thResearch by scientists at The University of Western Australia and the Université Pierre et Marie Curie in France has shown that weak sequential electromagnetic pulses (rTMS) can help to properly locate abnormal neural connections in mice. rTMS does not affect normal neural connections, meaning there should be no side effects. The immediate concern is to have a new therapy for such neurological problems as epilepsy, depression, and tinnitus. Such a therapy should also provide a benefit to TBI survivors, who are constantly “rewiring” parts of the brain. (Full story)

 

(Clip Art compliments of Bing.)

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My name is Michelle Munt and this is my story about surviving a brain injury and what I continue to learn about it. This is for other survivors and their loved ones, but also to raise awareness of what can happen to those in an accident. This invisible injury too often goes undiagnosed and it can be difficult to find information about it. I will talk about things that have helped me as I continue to recover and invite others to see if it works for them too.

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