TBI – Survivors, Caregivers, Family, and Friends

Survivors SPEAK OUT! Ryan Stoltz

presented

by

Donna O’Donnell Figurski

 

Stoltz, Ryan Survivor

Ryan Stoltz – Brain Injury Survivor

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

Ryan Stoltz

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

Eureka, California, USA     Ryan.Stoltz2014@gmail.com

3. On what date did you have your brain injury? At what age?

My traumatic brain injury (TBI) happened on July 13, 1997. I was 17 years old.

4. How did your brain injury occur?

My TBI was caused by a car accident.

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

About six months

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

I was intubated at the scene. I was then given a trach (tracheostomy tube), a G-Tube (gastrostomy tube), and IVs.

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

I was in a coma for 23 days.

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, speech, and physical therapies. The physical therapy was to relearn how to walk. I was in acute physical rehab for nine months.

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

I have problems with balance, memory, speech, and perception.

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

My life is dramatically much worse. I have no independence.

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

I miss being able to go out and about on my own – without assistance from anyone. I also miss having my own family.

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

I don’t enjoy anything because every day is a struggle.

13. What do you like least about your brain injury?

I dislike not being able to accomplish the dreams and goals I had for myself.

14. Has anything helped you to accept your brain injury?

I was helped by my support system at home (my family) and by my support systems at my job and my day program.

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

My relationships at home were not affected because my parents have been a great support for me.

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

Stoltz, Ryan 2 Survivor

Ryan Stoltz – Brain Injury Survivor

My social life was affected greatly because I can’t go anyplace or do anything on my own. All my friends have grown and were able to move on with their lives. I feel like I was left behind.

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

My parents have been my main caregivers. Yes, I do understand what it takes. They help me with all my needs and wants in my home life. I also have a respite worker who takes me out into the community to do the fun things I like to do.

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

I want to be a mentor to others by telling them my life-story from before my accident to my accident and then telling them how the accident has affected my life.

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 survivors with your specific kind of brain injury.

I would like survivors to be more willing to hear both sides of the story.

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

Don’t get angry at your situation. Take life day by day.

If you’d like to learn more about Ryan, please check out his blog.

Didn’t Give Up: Your Life Can Change in a Minute

 

(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.

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

 

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blog: http://didntgiveup.wordpress.com

On The Air: Brain Injury Radio “Another Fork in the Road”

with

Author, Jim Proebstle

presented

by

Donna O’Donnell Figurski

images-1

 

Jim Proebstle, author of “Unintended Impact: One Athlete’s Journey From Concussions in Amateur Football to CTE Dementia,” tells the story of his older brother, Dick Proebstle, who didn’t get the fame and fortune of some NFL Football players, but did get the repercussions as he received countless head injuries while playing high school and college football.

Dick’s life went from the stars to an abyss over the course of 50 years. He lost so much without his knowing or understanding why. In fact, his children and family didn’t understand his decline either. Jim Proebstle 1It wasn’t until CTE (Chronic Traumatic Encephalopathy) came to the forefront when neuropathologist, Dr. Bennet Omalu  discovered the disease in the autopsied brain of 50-year-old Mike Webster, a once-upon-a-time revered Pittsburgh Steeler whose life unexpectedly declined soon after retirement. This left Webster homeless and exhibiting abnormal behaviors. Soon after, the brains of many other deceased NFL players were examined and various degrees of (Chronic Traumatic Encephalopathy) were also found. Dr. Omalu’s discovery began to open eyes of many other scientists and Boston University began a study. 89 of the 93 donated NFL player brains, were found to have CTE, which explained to the families the many bizarre behaviors their loved ones were exhibiting before they died.

Jim Proebstle Unintended Impact BookJim wrote his book, “Unintended Impact” to not only honor his brother, but also to  raise awareness of the dangers of all head injuries. Jim also authored two other books, “Fatal Incident” and “In the Absence of Honor.” You can find any of Jims’ books at amazon.com

If you missed this show with Jim Proebstle, author of “Unintended Impact: One Athlete’s Journey from Concussions in Amateur Football to CTE Dementia” on “Another Fork in the Road” on March 20th, 2016, don’t fret. You can listen to the archived show here. Click the link below.

To learn more about Jim Proebstle, please visit his website.

See you “On the Air!”

On The Air: Brain Injury Radio “Another Fork in the Road” with author, Jim Proebstle

 

(Clip Art compliments of Bing.)

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Don’t Let What You Survived Bring You Down

by

Karen Bradley Williams

presented

by

Donna O’Donnell Figurski

 

Williams, Karen Bradley SurvivorI am a three-time traumatic brain injury (TBI) survivor (2007, 2010, and 2011). After my first one, I lost everything, including my husband, but I always had my mom. Now nine years post my first TBI, I am remarried to a wonderful man. He loves me, knows and understands my limitations, and treats me like a queen. I have gone back to college, and I am a nationwide certified pharmacy tech. I have real friends and a great life.

Don’t let what you have survived bring you down. Look at what you have made it through. Do not give up now. Your miracle is just around the corner.

 

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

If you have a story to share and would like to be a part of the SPEAK OUT! project, please submit your TBI Tale to me at neelyf@aol.com. I will publish as many stories as I can.

As I say after each post:

Please leave a comment by clicking the blue words “Leave a Comment” below this post.anim0014-1_e0-1

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Why You Should Tell Your Brain-Injury Story

by

Ric Johnson

presented

by

Donna O’Donnell Figurski

 

Boy Blogger thMarch is Brain Injury Awareness Month.  It’s said that brain injuries constitute an invisible and silent epidemic. Invisible? Yes, because most times we, “the walking wounded,” seem fine and because there isn’t a high-profile celebrity who is a spokesperson for brain injuries. Silent? Yes, again, because most of us prefer to blend in and don’t have a public forum to speak from.

Is it possible to stop having brain injuries called “silent” or “invisible”? Yes, it is. It’s all about educating the general public.

Let’s start first by explaining. What is the difference between a mild, moderate, or severe traumatic brain injury (TBI)? According to my dictionary, “traumatic” means “shocking,” “devastating,” “alarming,” “distressing,” “terrifying,” “upsetting,” “wounding,” and even more adjectives. Which seems like there is no such thing as a “mild” or “moderate” traumatic brain injury. The only apparent difference is what caused the injury. A brain injury is a different kind of injury. We didn’t break our arm; we broke our brain. We didn’t remove a cast after eight weeks and get on with life; we needed to relearn, refocus, and re-navigate into our old lives if or when possible. There isn’t a 100% healing process – any person who had a brain injury still has a brain injury and is still recovering.

Concussion seems to be a brain injury that’s mentioned everywhere these days. That’s good – people are beginning to understand concussions. But, concussions are mainly (not always) from sports (football, skating, soccer, and skiing, to name a few). I probably had two concussions after getting hit by cars. I didn’t think I had a concussion at the time, but the more I think about it now, the more I believe I had a concussion from each. I didn’t have any major problems that I can think of, but the accidents happened many years ago.

Johnson, Richard la5-seQbctqTwXPuELQm7w3ZPSPra73-BTYsV2TzFrmHjlfsj8CAdfvj1wnfejETg2tSTJ4rfqDvOL9oMI_160CYm__3H82mWGki2QEVhZYz8ZLYhqad7IsWyOqj_li8nObQrOkqqzVt95fKknyW4oNd7A0fSkhYMnExzhzeBcwPbATtvzU5LI-TdmefuMcdZc7l959--u6H5aNYtBUCZmiCBS0BWSmt

Ric Johnson – Brain Injury Survivor

Traumatic brain injuries seem to be getting more attention as well. A TBI may seem as the most serious type of brain injury, but only because of the circumstance that caused the injury (a violent blow/jolt to the head or an object penetrating the skull). Most people think TBIs come from actions like bomb blasts, combat, violent shootings, or horrible car accidents. Well, falls are main causes of TBIs – falling down stairs, falling from a ladder, falling when attempting to cross the street, etc.

My injury happened when I fell from a ladder while cleaning the gutters on my house in October 2003. I spent one month in HCMC (Hennepin County Medical Center) in a medically induced coma. I needed craniotomy surgery to relieve swelling on my brain. I had many MRI (magnetic resonance imaging) and CAT (computerized tomography) scans, a feeding tube, a tracheotomy, a session in the hyperbaric chamber, etc.

After waking from my coma, I spent the next two months in two different hospitals to see what, if any, therapy would be necessary. I started with physical, occupational, and speech therapy sessions daily. In January 2004, I was released and was back at home. I wore a protective helmet until the bone flap was reinserted on my skull in February 2004. I continued with speech and occupational therapies at Courage Kenny (Center) from January to September 2004. I went back to my full-time job in October 2004.

Since then, I have become a member of the Minnesota Brain Injury Alliance Speaker Bureau, and a facilitator for the Courage Kenny Brain Injury Support Group. It looks like I recovered nicely, but looks can be deceiving. It may seem like most survivors can go back to their pre-injury occupations. In fact, most survivors cannot.Typewriter 4C

So what can survivors do? They can become advocates for all survivors. Let the public know that a brain injury is perhaps the worst injury of all. It doesn’t just happen to one person; it happens to the entire family as well. Let the public know by telling your story.

 

Thank you, Ric Johnson.

Disclaimer:
Any views and opinions of the Guest Blogger are purely his/her own.

(Clip Art compliments of Bing.)

(Photos compliments of Ric Johnson)

As I say after each post: Please leave a comment by clicking the blue words “Leave a Commentanim0014-1_e0-1 below this post.

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Survivors SPEAK OUT! Ventura Manzanares

presented

by

Donna O’Donnell Figurski

 

Manzanares, Ventura Survivor 070515 1

Ventura Manzanares – Brain Injury Survivor

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

Ventura Manzanares

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

Denver, Colorado, USA     venzar2238@gmail.com

3. On what date did you have your brain injury? At what age?

I was poisoned by carbon monoxide between the ages of 4 and 9. The poisoning was from low-level dosages over time (five winters in Colorado). The rest of the year, I often played in the basement – near the pile of coal. Coal dust has arsenic. Furthermore, the heat pipes were wrapped in asbestos paper. I remember that, when the furnace was hot, little silver specks would pop off into the air. So, I got a triple whammy – carbon monoxide gas, arsenic dust, and asbestos dust.

4. How did your brain injury occur?

When I was one month old, I was abandoned by my parents. I was raised by my step-grandmother. I was sometimes beaten and sent to the basement to shovel coal to warm the house.

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

All through school, I remember being on-edge, fighting, and having rage blackouts. My brain would “spin.” (When you drive down the road and look at the wheels of the car next to you, every once in awhile, you get a glimpse of the hubcap. That was how my brain functioned.) I didn’t know at the time that I had brain injury. After many years, I just ignored it and tried to fake it until it passed. My brain injury wasn’t diagnosed until 2010 – during a check-up when I was living in a homeless shelter in San Francisco. Then I found the carbonmonoxidesurvivor.com website.

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

I was never treated until 2011, fifty-nine years after I was poisoned. I was given an experimental drug – Depakote (a mood stabilizer) – for one year. It worked immediately and had a lasting effect. I still feel good to this day.

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

No, but at times I did fall asleep. I remember waking up on the dirt in the basement. I also had the most painful headaches – cluster headaches on the right side of my head. My headache would last for days and take days to go away. (Cluster headaches last for periods of time. They are among the most painful types of headache known. Typically, they occur on one side of the head.). The headaches lasted from my teens into my mid-30s. I lost my life – my wife and daughter and also jobs – from those days.

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 have gone to a psychologist for most of my adult life, but the carbon monoxide poisoning was never addressed. My therapy now is EMDR (Eye Movement Desensitization Reprocessing) as well as binaural beats (non-musical sounds that can get your brain into a variety of desired states) and Hemi-Sync (an audio-guidance process that results in the left and right hemispheres working together) brain entertainment programs that I have installed on my smartphone. I can use them anytime I need throughout the day.

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

Tinnitus is a major issue in both ears – the ringing in each ear having a different frequency and volume. I suffer from throbbing and a sudden high-pitched ring that makes me deaf. I have to create a vacuum with my hands and pump out my ears to make it stop. I also experience nausea, dry heaves and a bubbling belly, and diarrhea – sometimes daily and several times a day. I get a feeling like I have an attached entity – like a heavy darkness – on the top of my head and on my face, throat, and chest. All these come in waves and last hours to days. I had always felt overwhelmed and stressed out. I could never keep a job for very long. Violence in my relationships and at work was my way of life.

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

As I’ve gotten older, I have eliminated as much stress as possible. But, my family (three ex-wives and two daughters) all hate me. In the 90s, I was a lot worse. I would wake up sick for hours at a time. It is not as bad now after the Depakote treatment.

Manzanares, Ventura Survivor 070515 3

Ventura Mazanares – Brain Injury Survivor

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

I missed out on everything. I don’t have many good memories of my childhood. I don’t remember Christmases, my birthdays, or Thanksgivings. School was a blur of time. I do remember getting beat up by bullies. My second marriage was horrible. I was out of control and violent. I was stressed to the maximum of my mind.

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

I like that I have gotten smarter and more calmed-down. I want to live now. Before, I just wanted to be dead. I’m happy for the first time in my life.

13. What do you like least about your brain injury?

I dislike the tinnitus for sure. I get really tired of the throbbing and hearing the ringing. It wears me down. I also don’t like the nausea and the dry heaves, which have me gagging all the time.

14. Has anything helped you to accept your brain injury?

Yes. It has helped to know what caused it – carbon monoxide gas. I’ve also been helped by the carbonmonoxidesurvivor.com website. I thought I was insane, and so did everyone else. I finally have a reason why I have had so many problems all my life. I was a bad person with a bad brain. But, I knew I was a good person. I just didn’t know how to do life, until now.

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

Yes. Everybody hates me. They won’t accept the truth about carbon monoxide poisoning. My family life is destroyed. I haven’t seen my youngest daughter for sixteen years.

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

I had no social life before because I was overwhelmed. I was like a leaf in the breeze – drifting and lost. Now I feel like getting out more. Also, I have met many wonderful, supportive people in the TBI (traumatic brain injury) networks on Facebook.

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

I have myself as a caregiver. I was employed as such when I was going to massage school in the early 90s. I did massage for twenty years. It gave some balance to my spinning brain.

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

I am in the process of writing a book about my life with TBI. I hope to enjoy my retirement and my pathetic social security money. Maybe I’ll be living on a friend’s ranch and be at peace.

Manzanares, Ventura Survivor 070515 2

Ventura Manzanares – Brain Injury Survivor

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 survivors with your specific kind of brain injury.

Seek help immediately – no matter how little something may seem. Don’t take the “You’ll get over it” answer from anyone. You know what you need. Go get the answers, and save yourself.

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

Be gentle with yourself. Surround yourself with gentle, supportive people. It’s okay to do it alone sometimes. In not talking and dealing with others, we can hear ourselves. Go with your cravings – eat when you’re hungry and rest when you’re tired. Sometimes your body knows better than your mind.

 

(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.

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

 

As I say after each post:

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

Please follow my blog. Click on “Follow Me Via eMail” on the right sidebar of your screen.anim0014-1_e0-1

If you like my blog, click the “Like” button under this post.

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

If you don’t like my blog, “Share” it intact with your enemies. That works for me too!

“Another Fork in the Road”

Fork in the Road copyThis 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.

 

Reasonable, Responsible, & Realistic Resolutions

by

Donna O’Donnell Figurski

 

blank list of resolutions on blackboard

New Year’s Day has passed. A new year is always a time of renewal – a time to look back on the past year and make positive commitments for the upcoming year. As humans, we seem to strive to improve, to make life better. The new year is a good time to correct old mistakes and to look to the future and make new plans.

I think this topic is appropriate now, as we look back on the past two months to determine if we are honoring our New Year’s resolutions. Did we, in fact, make reasonable, responsible, and realistic resolutions?

 It feels like the whirlwind of the holidays happened eons ago, and yet it’s just been two months. If you are like most of the population, you probably made resolutions on New Year’s Day – promises to yourselves that you would do something in your life to better it. In the days after the New Year’s celebration, you will see more people in the gym or running through the streets – maybe decked out in new running clothes to increase their motivation. You might hear folks talking about the new diet they are going to try to lose those unwanted pounds. Some folks vow to stop smoking or drinking, or at least they intend to cut down. Folks promise to take more time for family or friends, save money, travel more. new-years-resolutionsThe list goes on and on. Usually these resolutions are good intentions for the year that last maybe a week or two – perhaps even a month – but for whatever reason or reasons – time, lack of interest or motivation – many of these good intentions fall by the wayside.

Each new year, I usually make the resolution to exercise more. I start off okay, but not long after New Year’s Day is past, the motivation walking_girlstarts to wane. Lack of time, or more like “inability to properly manage time,” is a big factor for me. I seem to be always too busy with tons of projects, most of them involving writing. I work daily on my blog. I spend hours preparing my radio show. I’m writing articles for publication, and, of course, I have to write a lot of query letters to agents and publishers as I try to sell my book, “Prisoners Without Bars: A Caregiver’s Story.” It seems that the only things that ever get any exercise are my brain … and my fingers as they fly over the keyboard. Uh, did I say “fly”? I meant more like “stumble.” Most of my projects have deadlines – if not actual ones, then at least self-imposed ones. So, due to my over-commitments, this year I chose not to make any resolutions that I know I will not keep. Not keeping my resolutions only makes me feel like a failure, and that is not productive. I bet a lot of people fall into this category.

Folks with a brain injury are continually working to improve their lives, and New Year’s resolutions may seem even more important. Brain-injured people are used to taking small steps, but the temptation for New Year’s resolutions may be to try to do too much.

I’m going to discuss how to keep interest up and to make it possible to reach the goal of a reasonable, responsible, and realistic resolution.

DO YOU ENJOY YOUR GOAL?

Don’t have a goal you will never want to do. That’s a recipe for disaster. Is your resolution such a chore that you can easily find any excuse to NOT do it? If you’d rather clean toilets than complete your resolution, then perhaps you should reassess your resolution. toilet1I can pretty much guarantee that you will not be successful and that lack of success is certainly going to instill feelings of failure. I think a big part of being successful in keeping a resolution is to give the goal some thought first.

DECIDE HOW YOU WILL IMPLEMENT YOUR GOAL

If you want to get more sleep and go to bed earlier, then set an alarm for 30 minutes before your desired bedtime so you can start your sleep in bedbedtime preparations. If you want to always remember where your keys are, put a hook on the wall and ALWAYS hang your keys there. You will never have to search your home again for keys. Following a routine makes life easier. That goes for anything. Also, use available tools (calendar, Post-It notes, smart phone, etc.) to help you keep organized.

KEEP A TRACK RECORD

By keeping a record of your accomplishments, you are setting yourself up for success. You could keep a record in a journal-like notebook. journalSimply write the date at the top of the page, and write what you accomplished that day (e.g., Sit-ups – 5 minutes; Meditated – 10 minutes). You could also simply use a calendar dedicated just to your resolution and write your activity under each day that you do it. If you are computer savvy, you could keep a spreadsheet. Place the days in the left column; list the activities across the top. Then just put a checkmark in the box corresponding to day and activity. That would be the way I would do it.

I like to see my progress. It motivates me. I enjoy seeing how well I am doing – or NOT doing, so that I can readjust and improve. It may work for you too.

BE PATIENT – YOUR GOAL WILL NOT BE ACCOMPLISHED OVERNIGHT

Your success will not happen overnight. It will take time. You may even become lax at times, but don’t worry. The record keeping that we spoke of above will help to get you back on track.

Before his brain injury in 2005, my husband, David, used to do a half hour of his version of Tai Chi every morning. He’d run twenty miles each week, and he’d regularly lift small weights to strengthen weight_lifting_13his arms. He was fit and healthy. He exercised not only for his health, but also to leave the stress of his laboratory behind. David’s disabilities are all physical, including severely compromised balance, which makes him unable to run. He regrets this, but he has turned his attention to the treadmill – with its handrails – for exercise. He has also recently acquired a recumbent trike, which allows him to pedal away on his own with no danger of falling. None of this was possible when David first arrived home from the hospital. He was confined to wheelchair and bed. He could not even stand unassisted. It was a slow process – one that he has worked on over the past eleven years, but with small steps and small increments of exercise, he is gaining his strength and his independence.

So, no matter what your goal is, BE PATIENT. Reach for the stars, but remember, it will take time.

BE FLEXIBLE

If you choose a goal that you find is not appropriate – it’s too hard, it’s too easy, or you are not enjoying it – QUIT IT!

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It’s your life, and you can make the choices. Because you are a brain-injury survivor, I am sure there are many goals you would like to accomplish. Make new resolutions. (It doesn’t have to be a new year.) And, mix it up.

If you are not seeing the progress you want – for whatever reason, choose something else to work on. You can always come back and try again later. That’s why I encourage you to make reasonable and realistic resolutions. You want success to be imminent.

Once David tried a form of therapy on the recommendation of a friend who insisted that it helped her greatly, and, in fact, it did help her. David tried it for quite a long time and dedicated himself to it, but found it tedious and boring. He soon quit and set his sights on something more enjoyable that was not going to make him miserable. That’s where the flexibility comes in. Do what works for you.

TRY SOMETHING NEW

I mentioned earlier to “mix it up.” That’s not a bad idea for anyone. If boredom sets in, your chance of success will fall greatly. You won’t reach your proposed goal, and you will become disenchanted with the activity. The feelings of failure are right behind. So, don’t put yourself in that position. Make a new resolution, and try something different. It can be something different that is still familiar, or it can be something so different that you have never done it before.David on Recumbent Trike

I want to go back to the story of David’s recumbent trike. In his adult life, he never rode a bicycle. As I mentioned, his preferred method of exercise was to run. When that was no longer a viable exercise mode, he turned to a recumbent trike. That has changed his post-brain-injury life. Before the trike, David was unable to leave the house alone. Now he can leave whenever he wants to. He is able to go to the garage, get on his trike, ride for several hours, and return. (The only thing he cannot do is get off the trike anywhere else because his balance issues do not allow him to walk freely outdoors.) So, try something you have never done before. Maybe you always wanted to draw or paint. Do it.

HAVE A BUDDY FOR SUPPORT

You may want to exercise with a buddy. Exercise can be much easier with a friend. I much prefer walking and talking or treading water in the deep end of a pool and talking or rotating through the machines in the gym and talking. Are you seeing a pattern here? I find exercising with a friend much more enjoyable than exercising alone. No matter what your goal is, if you can do it with someone else, it makes the exercise easier. It also adds an element of accountability. If you have made plans with a friend, you are more likely to meet your goal.swimming

For most survivors with brain injury, life has drastically changed. The kinds of resolutions that you may have made before your brain injury are now more than likely impossible to attain. But, that doesn’t mean that you can’t set goals that you can successfully achieve. The gym may be out of the question, but you can set aside some moments at home for leg lifts, small weights, push-ups, stepping-in-place, etc. You can do anything to keep your body fit.

Each brain injury is different. The disabilities that accompany each brain injury are wide and varied. For some folks, the injury entails only cognitive/learning disabilities or emotional issues. For others, the brain injury might include physical disabilities.

So basically, you want to assess what you can do to improve your life while not being miserable. You want to make resolutions that can fit into your lifestyle. You don’t want to set your goals so high that they cannot be achieved. But, if you set your goals too high, change them. Make your resolutions reasonable, responsible, and realistic. Most of all, make them FUN.

have_fun

 

Click here to listen to my show:

“Responsible Resolutions” on “Another Fork in the Road,” on the Brain Injury Radio Network.”

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On The Air: Brain Injury Radio “Another Fork in the Road”

Grief After Brain Injury

presented

by

Donna O’Donnell Figurski

 

images-1Grief is often an after effect of brain injury. It is experienced not only by the survivor, who may have lost his or her “old” self and is trying to adjust to his or her new world, but also by those who have frequent contact with the survivor. As we know, brain injury affects ALL members of the family, who are often the caregivers.

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Lisabeth Mackall caregiver & author

Panelists, Sandra Williams (both survivor and caregiver), Dr. David Figurski (survivor), and Lisabeth Mackall (caregiver) joined me to discuss the topic of GRIEF. We examined the feelings of the family as they adjust to their loved one’s change, as well as discussed the stages of grief as outlined by Dr. Elisabeth Kübler-Ross in her book entitled, “On Death and Dying.”

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Sandra Williams survivor & caregiver

 

David

David Figurski survivor

 

 

 

 

 

 

 

 

If you missed this show about “Grief After Brain Injury” with Lisabeth Mackall (caregiver), Sandra Williams (survivor and caregiver), and David Figurski (survivor) on March 6th, 2016, don’t fret. You can listen to the archived show here. Click the link below.

See you “On the Air!”

On The Air: Brain Injury Radio “Another Fork in the Road” Grief After Brain Injury

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(Photos compliments of guests.)

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Survivors SPEAK OUT! Chelsea Rolph

presented

by

Donna O’Donnell Figurski

 

chelsea rolph

Chelsea Rolph – Brain Injury Survivor

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

Chelsea Rolph

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

Toronto, Ontario, Canada

3. On what date did you have your brain injury? At what age?

I have unfortunately had many traumatic brain injuries (TBIs). My first one happened when I was roughly 5. I have also had a concussion at 17 and two more at 18.

4. How did your brain injury occur?

My first TBI happened because I wasn’t wearing my seatbelt properly. Somebody hit my dad in a parking lot, and I flew out of my seat and hit my head on the seat in front of me. My later TBIs happened because of my favourite sport – basketball. You see, sometimes I get competitive. Sports were also my way of releasing any built-up anger I might have. I would let it all out on the court. One day, I was going for a ball, and I got an elbow in my temple. I blacked out for a minute, but I convinced my coach and the refs that I was okay. I kept playing until my coach noticed that something about me wasn’t right, and he took me off the court. After the game, I was taken to the hospital to get checked out. That was where they told me that I have a TBI and that I should relax – take time off from school and sports.08172116cc812061b05e6a42350f7002

My later TBIs were the ones that really affected me. I remember being in a basketball game (the second of the season), and we were down by 1 point with 44 seconds on the clock. I had a lane. I drove to the net, went up for my layup, and then darkness. I was out. I woke up lying underneath the net and feeling so confused. My coach and the ref were standing by me. I was immediately taken to the hospital. I remember that my eyes were doing weird things, such that the doctor called other doctors to take a look. I actually took time off from school that time. However, I was banned from sports for the rest of my life. I was told that, even with a helmet, I would still suffer from concussions.

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

I knew the injury was serious when I started blacking out. I was also really sensitive to light. I remember that the day after I hit my head, I woke up and I was blind. I opened my eyes, but all I could see was darkness. It was a really scary feeling. I called for my mom, and she took me back to the hospital.

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

I never had any emergency treatment. However, I was tested for anything and everything. I was given an MRI (magnetic resonance imaging), a CT (computerized tomography) scan, ECGs (electrocardiograms), an EEG (electroencephalogram), and a stress test. I had ECT (electroconvulsive therapy). I wore a heart monitor for a week. They did a sleep study on me, and I was given a neuropsychological test. Some of these tests gave me answers, and some did not.

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

I was never in a coma. I just had seizures and random blackouts.

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 was in outpatient rehab in Hamilton, Ontario. That hospital is the reason why I had answers. I went there for roughly one year. I was on a fast track because my goal was to discover if I was able to go to school. Basically I spent my summer in the hospital to do the tests and to get the results.

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Chelsea Rolph – Brain Injury Survivor

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

I had a lot of problems. The one that affected me the most was the fact that I would pass out if I got my heart rate up. I was no longer able to play sports with my athlete-friends. I also noticed a huge shift in my personality. I used to be a very happy-go-lucky person. I wanted to be a Social Worker and help others. After my TBI, I became a huge jerk! I was always moody, I stopped caring about things, and I altered my personality so I wouldn’t let things affect me. I kept myself from getting attached to things I care about. I loved basketball, and in one second all of that was taken away from me. I still suffer from this. I have made myself an emotionless robot. I also stopped wanting to be Social Worker because I realized that if I couldn’t help myself, then I couldn’t possibly help others. I had to get bifocals. (I was having a hard time adjusting from up-close visuals to things far away.) I also had a hard time with my memory. I used to be in acting, and I could memorize a script easily. However, I was not able to remember what I read. My short-term memory was severely affected. My doctor referred to me as “an old computer.” (I had the information needed, but it took a while to get to me. I kept buffering.) I lost my abilities to multitask, to focus, and to sit still. My fine-motor skills suffered. Sometimes I have a hard time understanding what has been said to me and how to answer. I also had difficulty sleeping because I was having mini-seizures in my sleep.

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

Has my life changed? Of course! Is it better or worse? Who knows? I have suffered, and I have dealt with things on my own that people shouldn’t. I remember coming home from school crying to my mom because all of a sudden I was unable to do the things I used to do. In contrast to the thoughts of many people, I was still able to complete University. I might have just gone to college (like I should have), but now I can proudly say I have my degree! That might not have happened without my TBIs because back then I wasn’t out to prove anything. Do I now have a bigger debt than what I should have? ABSOLUTELY! However, I will never regret it. My life isn’t “better” or “worse” than it originally was, but I feel I have been very fortunate.

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

I miss my friends. All of my friends are athletes. Taking away my ability to be active took me from my friends. I was no longer able to do the things that I normally did. My friends kept playing sports, and I kept sitting on the sidelines. It wasn’t easy, but I found the ones who are able to understand that part and still be by my side. I really cherish that.

I also miss my ability to always be willing to go out and meet new people. I get exhausted a lot more easily than I used to. Before, I would never be home. I would always be working. If not, I would be playing a sport, and if I weren’t doing that, I would be with my friends doing fun, crazy things! My fiancé is a DJ, and a part of being the DJ’s significant other is going to his gigs and socializing with the other significant others. I still love doing that, but now I find it more exhausting than what it should be/used to be!

I would like to be able to go back and play sports the way I used to, but now I am a coward. I am scared of playing. I am scared of taking two steps backwards. I have moved on from what I wasn’t able to do, and I am now trying to find other things that I enjoy. I am slowly trying to get back into the shape I used to be in five years ago.

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

I enjoy the fact that I got to start over with a blank slate. I was able to take a step back and really see what and who made me happy. I love that my fiancé was in my life when I was first dealing with my issues. He has never left my side. I love that I was able to prove to doctors, friends, family, and the faculty at McMaster University that, despite what they thought, I could graduate without the accommodations I should have had. I am now out living my life. I am doing what every recent graduate does – looking for a full-time job, hopefully buying a car, and looking for an apartment. I am doing everything that most people do, except with an invisible problem.

13. What do you like least about your brain injury?

I don’t like the fact that I lost something that I loved, which, I previously mentioned, was my love for basketball. I faced loss, even though nobody had passed away. I felt as though something I had strongly cared about was taken away from me. I also don’t like the fact that I have an invisible illness. I don’t want to make excuses. When I am having a problem with something, I don’t like to say, “I have had a concussion.” I don’t promote that about myself. I hated that I was so close to potentially receiving the grade 12 Athlete of the Year award and that it was taken away from me without a fighting chance.

14. Has anything helped you to accept your brain injury?

A couple things have helped me on my journey to success. My rehab clinic helped me a lot! It helped me by giving me answers to the problems I was having. I don’t normally like talking about my feelings, but I do enjoy talking to one of my pets. My mom, my sister, and my fiancé have also helped me. The one thought that I always have is “My TBI happened. I can’t dwell in the past, and I can’t make excuses. What I can do is do what I love. If I have a challenge, problem solve. What can I do to make this work for me?” I realized that I shouldn’t have to give up on something because it is tough. I have to come up with my own solutions to deal with that problem.

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

Besides the fact that I am moody, my TBIs haven’t affected my relationships too much. It was tough dealing with my changed memory. If my parents asked me to do something for them, there is a good chance I would forget. When my boyfriend and I were originally dating, I hated that I had to ask him personal questions multiple times because I couldn’t remember. Other than that, not much has changed.

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

I have mentioned before about my social life. I felt like I had lost my friends because of my inability to play sports alongside them. I have become more of an introvert. I like coming home and relaxing. I get overwhelmed socializing for a long period of time. I need breaks from people – I need “me” time.

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

My mom was my main caregiver. It must have been really tough on her to have her baby daughter come home crying every day because of frustration. My mom has been my rock. She has been by my side every step of them way. I don’t know what I would have done without her. She was the one who supported me when I decided to go to University without any help, and she was there to see me walk across that stage.

Chelsea Rolph 1 Survivor 061415

Chelsea Rolph – TBI Survivor – Graduate McMaster University

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

I am always wondering what I want to do with my future. I would love to inspire some people. I have always thought about working at a juvenile detention centre. I would love to talk to the kids and show them that they can prove others wrong – “Don’t let others tell you who you are or who you’re not, and don’t let them control your future.” I want to write about the power of “Yes” and “No.” Other than that, I would love to get married to the love of my life and maybe start our own family!

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 survivors with your specific kind of brain injury.

I want others to know that something good can come out of this situation. I really had a hard time with this. I ran into one of my former high school gym teachers, and I was told that, because of me, the rules around brain trauma have been altered at the school level. The School Board has created guidelines with steps to follow if a student has a brain injury. I work at a recreation centre teaching sports to kids, and I walked out of the gym and saw the guidelines posted. A student must have time off, and when the student returns, he or she is to have a private room with no distractions. Even though I had to go through my TBIs with no support from my high school, except for some of my teachers, my journey helped create change for others.

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

Never lose hope! You are only as strong as you feel. Keep pushing forward, and make the best of every day. Seize the moment and life with no regrets. Things happen. If we dwell on the problems, we will never give ourselves room to grow and improve. If I decided not to go to University and just take the year off, I might not be in the state of mind that I am in today. I also might not have met the people who took me “across the ocean.” You are the main character in your life-story. You get to choose the paths you take. Don’t let barriers get in the way of your happiness. If something doesn’t work for you, make it!

 

(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.

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(Photos compliments of contributor.)

 

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So, Whaddya Think?

 My Opinion: Rethinking the Design of Football Helmets

by

David Lloyd

presented

by

Donna O’Donnell Figurski

 

So Whaddya Think Brain th-4The reason for a hard helmet in American football is to prevent deaths from skull fractures. The attempts to make bigger and thicker helmets have been based on trying to absorb linear impact force, but that’s based on the faulty notion that linear impact force is related to brain injury (Condi, 2015).

It is the sudden rotation of the head that actually causes brain injury (Meaney, Morrison, & Bass, 2014). A bigger helmet “leverages” rotation, increasing the likelihood of brain injury (2016, January). We need to rethink helmet design entirely. I suggest using an artificial scalp (Aare, 2003), like the leather helmets from the 1930s (Stamp, 2012, October), with a springy, lightweight, carbon-fiber framework to absorb linear impact. The design should include guarding the mouth and chin.

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David Lloyd – Brain Injury Survivor

Another possibility would be a variation of the so-called “invisible helmet” (Haupt & Alstin, 2016), which is like the airbag in a car. Players would wear invisible-helmet-collars, which instantly expand to cushion the head upon impact. (While I think this could be a great idea for bicyclists, I suspect it would not work for football, but since it occurred to me just now, I thought I would include the idea.)

I would also put a couple of strategically placed, clear, and inexpensive disposable gelatin capsules in the helmet. These gelatin capsules would contain a bright-colored liquid dye in the center. When an impact is sharp enough to cause the gelatin capsule to release the dye, the capsule turns bright red (assuming a red dye was used) to indicate a possible brain injury. The moment a player’s dye-capsule breaks, that player is out of the game (possibly along with the opponent who hit the player). A light-sensor could trigger an electronic ID number to be broadcast instantly to officials, so an appropriate response could happen immediately. Every incident in which a dye-capsule is broken is recorded as a possible sub-concussive injury. Players with too many sub-concussive injuries can no longer play, regardless of apparent brain health.Gelatin Capsules.jpg

In addition, a smart phone-based application (Lathan, Spira, Bleiberg, Vice & Tsao, 2013) is used to test the player’s response times to a short series of tests, with scores compared with a baseline. Concussion is diagnosed on the field when the player’s test score is significantly different from his baseline. If a concussion is diagnosed, the player does not return to the field, and, at the discretion of the physician, the player may be treated with a neuroprotective drug, such as NeuroStat® (Campbell, Elmér, & Bronnegard, 2015), to prevent the death of neurons, which generally occurs before the symptoms of concussion are apparent.

th-1I think the Kevlar insert sounds like a very good idea. Put that layer next to the head, below the artificial scalp I suggested. This in turn is to be below a light weight, springy framework, which I imagined would absorb linear impact by rapidly changing shape and then dissipating the energy by vibrating. The artificial scalp layer, in addition to sliding to absorb rotational impact, would also insulate the player from damage due to the vibration energy.

The three most important issues are (1) detecting potential sub-concussive injuries when they happen and before they cause symptoms (via the gel-capsules), (2) protecting against skull-fracture, and (3) protecting against sharp rotation, which requires a helmet with a much smaller surface area.

Many studies (Kis, Saunders, Hove, & Leslie, 2004) over the years have concluded that protecting against linear impact is equivalent to protecting against rotational impact. If one reads only abstracts and conclusions from these studies, one may be led to believe rotational factors don’t need consideration. However, only recently have there been any attempts to measure rotational damage, and even in those cases, the tests actually measure linear impact from various angles. They assume it is possible to infer information about rotational impact from this information (Kis, Saunders, Irrcher, Tator, Bishop, & Hove, 2013).Concussion

I don’t believe a linear impact test provides any significant data regarding rotational injury to the brain. I think a meaningful test of rotational impact is with my dye-in-gelatin suggestion. It is simply not possible to design a laboratory test that can reliably measure all possible angles of force (Hernandez, Shull, & Camarillo, 2015) created in a multi-vector, real-situation impact. I have yet to see a meaningful test of damage caused by compression waves (Laksari, Wu, Kurt, Kuo, & Camarillo, 2015), which, depending on frequency, can be augmented by hard objects, such as helmets or even the skull itself. Create a clear-gel facsimile of a brain, add a few grapes to the gelatin to simulate denser areas of the brain, put it in a structure like a skull, wrap the skull in something analogous to skin and hair, and put THAT in a helmet. Then spin it, and drop it onto a fast-moving conveyor belt. Now count the fractures in the gelatin per cubic millimeter (using a microscope), and you will have BEGUN to create a meaningful model of what happens in a brain injury. It is likely that one cannot realistically study impact on the brain unless the artificial brain is connected by a neck to a body (Hernandez, Shull, & Camarillo, 2015).

I think attempting to reform the game would meet such extreme resistance that all kinds of misinformation would get published – obscuring the facts and preventing change. A better approach is to detect and track sub-concussive injuries before they compound to a level that threatens lives or affects mental performance.

Some are suggesting the elimination of football, but this “solution” makes no sense unless we eliminate all contact sports. I know boxing is much worse than football, in terms of the risk of brain injury. I’m pretty sure I could find evidence to indicate thatth-2 hockey and soccer are statistically more likely to cause brain injuries than football, but even basketball, track, wrestling, swimming, skating, ice skating, and even bicycling present similar dangers. [Actually, football is second only to cycling, followed by baseball and basketball for associated brain injuries (Sports-related Head Injury, 2014, August)]. In my mind, the greater danger to the collective health of the nation would be the elimination of these various sports (Devine, & Zafonte, 2009). Humans need to be active, and there is no way to eliminate the potential danger of living a healthy life.

 

So, Whaddya Think?

Let’s get a dialogue going. Post your comments in the Comment Section. Directions are below.

So . . . what do you think? Is there something you are passionate about in this Brain Injury (BI) world? Do you want to be heard? Your opinion matters! You can SPEAK OUT! on “So Whaddya Think?”

Simply send me your opinion, and I will format it for publication. Posts may be short, but please send no more than 500 words. Send to Neelyf@aol.com

I hope to HEAR from you soon.

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

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SPEAK OUT! Itty-Bitty GIANT Steps

presented by

Donna O’Donnell Figurski

Itty-Bitty GIant Steps for BlogSPEAK OUT! Itty-Bitty Giant Steps will provide a venue for brain-injury survivors and caregivers to shout out their accomplishments of the week.

If you have an Itty-Bitty Giant Step and you would like to share it, just send an email to me at neelyf@aol.com.

If you are on Facebook, you can simply send a Private Message to me. It need only be a sentence or two. I’ll gather the accomplishments and post them with your name on my blog approximately once a week. (If you do not want your last name to be posted, please tell me in your email or Private Message.)

I hope we have millions of Itty-Bitty Giant Steps.

 

Here is this week’s Itty-Bitty GIANT Steps

 

shaveBarbara Dan (caregiver)My husband came out of the bedroom with th-1his shaving kit and cell phone, and he gave me the biggest smile. He said, “My mind is getting better. Do you know why? I wanted to get my cell phone, but when I went into the bedroom, I couldn’t remember what I went in for. Then I started doing my shaving stuff, and when I saw your cell phone on the night stand, I remembered what I went into the room for – my cell phone.” He was so excited. The little stuff counts so much!
12674091_940851459283737_1880330839_nCarmen Gaarder Kumm (survivor)…Yesterday I left to go to the Mall of America, which is about a three-hour drive from my home, with a 16-year-old, a 15-year-old, and a 10-year-old. (My 15-year-old family+cardrove 80% of the way, and my 16-year-old was a Peruvian exchange student.) Halfway there I realized I forgot my pill for sleeping and my “happy” pill. I was concerned Mallbecause we were spending the night in a hotel, and then the next day would be spent shopping and driving home. Not only was I able to do it all with no anxiety, no bursts of anger, and no frantic rushing, but I also came home and attended my husband’s fire department banquet. (Note: I planned to sleep all the next day if I needed to.) Yay me!

 

Evan Joseph Powers (survivor)I just got incredible newcollege-student-studying-clipart-good-student-clipart-196s :), and I have to share the joy. College_Clip_ArtI got approval to go to a university – covered (thanks in part to my test scores ;). I get to fulfill my dream of working with TBI survivors. I’ve had this dream since my accident in August 2014. I am beyond happy right now!

 

YOU did it!

Congratulations to contributors!

 

As I say after each post:anim0014-1_e0-1

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 upper right sidebar.

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

If you don’t like my blog, “Share” it intact with your enemies. I don’t care!

Feel free to “Like” my post.

 

(Clip Art compliments of Bing.)

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