TBI – Survivors, Caregivers, Family, and Friends

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Past Blast – SPEAK OUT! Survivor Interview … Ann Boriskie

Past Blast!

Survivors SPEAK OUT! Ann Boriskie

presented

by

Donna O’Donnell Figurski

 

Boriskie, Ann Survivor 011116

Ann Boriskie – Survivor: Brain Injury Peer Visitor Association Director

 

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

Ann Boriskie

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

Alpharetta, Georgia, USA (a suburb of Atlanta, Georgia) aboriskie@braininjurypeervisitor.org

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

November 12, 1998, at age 48

4. How did your brain injury occur?

My brain injury occurred in a car wreck less than five miles from home. I was headed to a regular dental checkup.

A woman was talking on her phone while driving, and she obviously missed her turn. She stopped suddenly, but I was able to stop my car and not hit her at all. She just sat there at the bottom of a hill on the two-lane road. She did not move. A young student (16 years old) came down the hill. He said he was messing with his radio and just did not see us. He hit my car going 50 mph and pushed my car into the woman’s car.

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

About 48 hours after my wreck, I started having concussion symptoms. I experienced dizziness and mental “fogginess.” I could not walk. There was bruising under my eyes. The toes on my right foot went numb. My left eye was out of focus.

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

None. I walked away from the wreck thinking I was just fine. After 48 hours, I went to a 24-hour clinic, but they just sent me home. They told me I had no real problems and I would be fine. I also went to an eye doctor right away, but again, I was told there that nothing was wrong physically with my eye. Several months after my wreck, one neurologist told me that I had “post-concussion syndrome” and to go home – that I would be just fine. No one else mentioned my having a brain injury for one year. Then a dental TMJ specialist told me that I had a brain injury. That was what was causing my mental symptoms. (TMJ = temporomandibular joint)Peer Visitation Banner

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 and/or physical and/or speech and/or other)? How long were you in rehab?

My brain injury went undiagnosed for over a year. The physical therapy that I received was in relation to each of my physical injuries (see #9), especially to help after the surgeries that I had to have to repair the parts of my body that were injured.

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

a. My brain injury caused depression, anxiety, and anger (more so in the first several years). I had lots of memory issues. (I could not remember friends or faces. I got lost. I could not write. Then once I could write, I couldn’t write in cursive – I still can’t.) Some memory issues remain today. I permanently lost many of my past memories. (I can’t remember family events or experiences or places where we had lived. I lost memory of cities and our time there.) I lost a lot of my math skills (I was an A+ math student, and I was in advanced math classes), but I have regained many of these math skills.

b. My neck was injured. (The C4, C5, C6, and C7 vertebrae were knocked out of line.) I had to have neck surgery (for fusion and a metal plate holding these four levels together). My neck is in CONSTANT PAIN.

c. I had an injury to the L5 and S1 levels of my spine. (The last two vertebrae are not attached now to my spinal cord). Surgery was recommended, but my neck did not fuse properly, so I decided not to have back surgery. I am in CONSTANT PAIN in my lower back. The pain often radiates to my hips and legs.

d. I popped a tendon from its bone in my right elbow. (I braced my body on the steering wheel in the wreck.) It required surgery. The doctor said it was one of the worst tears he had ever seen.

e. Permanent nerve damage was created in various body areas.

f. The left part of my jaw was knocked out of line. It literally took years of appliance therapy to get the bone back into its correct place.

g. A valve was torn on the left side of my heart. This caused irregular heartbeats for a while. It repaired itself.

h. My left side remains weaker than my right side.

i. Numbness remains in my hands (which makes it harder to use my hands). I also have numbness in my feet, down my arms, and down my legs.

j. Sometimes my left eye will not focus or work well with my right eye.

k. I have a shorter attention span.

l. All of these physical injuries caused me to have fibromyalgia and constant body pains.

Boriskie, Ann Podium

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

In the long run, I have to say my life is truly better. All three of our children are in the medical field. (My husband and I have raised one daughter, now a neonatologist who takes care of premature babies and helps the moms; raised a son, now a doctor of internal medicine who works as a hospitalist; and raised another daughter, now a Registered Nurse in a mental-illness hospital unit.)

My priorities changed in my life. I went from being a “work-oholic” and a person who was very competitive to a person who lives to help other people, including my family and friends.

I slowed down my life’s pace. I had to learn that I could no longer work at a full-time outside-the-home job. (For years, I could not work at all.) I also had to learn to take care of myself – due to all of the physical and mental problems that the wreck created.

I was at home, and thus I was “there” more for my children and husband. I was able to give them more help and more attention.

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

I miss my higher energy level. I miss many of my memories. I miss all of the physical sports and activities that I can no longer do (water skiing, snow skiing, kayaking, swimming, playing golf, etc.).

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

I enjoy running the Brain Injury Peer Visitor Association and being able to help thousands of brain-injury and stroke survivors throughout the United States and the world. I’ve done this each year since 2006.

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

I dislike being in constant pain (which also affects my brain). I also dislike having to push myself more and having to work much harder to accomplish my goals and to do my work than I did prior to my wreck.

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

  1. Helping other people helps me also.
  2. Sharing my experiences with others and listening to each brain-injury survivor’s problems (This helps me to better understand my own brain injury.)
  3. Attending support-groups (and being very open to sharing my own problems, experiences, successes, and methodologies)
  4. In the past, gaining the help of neuropsychologists
  5. Going to medical doctors who treat brain injury (e.g., a psychiatrist)

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

Yes. I am much more dedicated to my husband and three children. I treasure our relationships. I also treasure my friendships more. You really better understand that life is way too short and can change in a second.

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

Yes. I no longer like to be in big crowds or in a noisy environment. Going to a party is now a struggle and sometimes a chore. I just avoid noisy places and huge crowds. This requirement definitely limits the activities in which I can participate.

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

My wonderful husband is my main caregiver. I am blessed that he “stuck it out” with me and helped me go through all of my physical and mental recoveries. He is also one of my biggest supporters – even financially supporting my association and approving of all of the volunteer hours that I dedicate to the Brain Injury Peer Visitor Association.

Boriskie, Ann Training in Florida Survivor 011116

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

I plan to continue running the Brain Injury Peer Visitor Association as long as I possibly can. My dream is to continue to grow the association throughout the United States and even internationally.

I also plan to continue to enjoy and spend time with my immediate family and their families.

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.

Accept your limitations, but continue to “push yourself” to improve. Realize that, even though you are different from the pre-TBI you, you are still a valuable person in the world. Let your “old self” go. Realize that person won’t be back. Embrace the “new you,” and learn to love yourself for who you now are. Remember that YOU CAN. Don’t defeat yourself by focusing on all of the things you can no longer do.

2011 Community Service Awards from WXIA 11

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

Help others. Get involved. Volunteer. By helping others with a brain injury, you truly help yourself in so many ways. You will help yourself get better, and you will gain confidence.

 

You can hear Ann Boriskie on my radio show, “Another Fork in the Road” at 5:30pm PT (6:30MT, 7:30CT, 8:30ET) on Sunday, January 17th on the Brain Injury Radio Network (BIRN)

Click here on Sunday 5:30pm Pacific Time. Another Fork in the Road: Ann Boriskie – Director of Brain Injury Peer Visitor 

You can call in to listen to the show or talk to the host by dialing this number. 424-243-9540

(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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New NEWS: . . . . . . . . . Exponential Spread of Coronavirus – Learn About It

Dr. David Figurski Speaks Out about the Exponential Spread of Coronavirus

Learn About It

presented by

Donna O’Donnell Figurski

David Columbia Award May 2017

David H. Figurski  Professor Emeritus of Columbia University  Microbiology and Immunology

Why are the WHO, scientists, and some leaders really worried about this pandemic? Why has society been asked to basically shutdown? Why has the governor of California predicted that half of the State will be infected with the new coronavirus?

… because viruses spread exponentially throughout a population.

Exponential spread is a concept that is not intuitive to humans. Here is an easy-to-understand illustration of the explosive power of an exponential function.

Start with $0.01. Then double the amount every day. (You will have $0.02 on day 2, $0.04 on day 3, $0.08 on day 4, etc.) Continue doing this every day for a month (30 days). It’s an piggy-bank-png-clip-art-image-5a1ca3f171b701.9718908215118264174658-1exponential function because every day you double the amount of the previous day (i.e., in this case, you multiply by 2) to get a new amount.

Watch how exponential growth leads to an explosion in the amount.

On day 1, you start with $0.01.1
On day 7, you will have $0.64
On day 14, you will have $81.92
On day 21, you will have $10,485.76
On day 28, you will have $1,342,177.28
On day 30, you will have $5,368,709.12

The number of coronavirus infections in the US is about to explode! The US pandemic is like about day 14 of the example. Some people are still thinking, “No big deal.” They have no idea of what’s about to happen.

A friend sent a link to me of a video that explains exponential growth in simple, very easy to understand math. Have a look. I highly recommend it. (How is Covid-19 Growing?)

People are totally wrong to be complacent about this pandemic. There have been relatively few confirmed cases, so some people are thinking we’ve got this licked. They’re wrong for two reasons. (1) The US was unprepared for this outbreak. Few (except the very sick and some celebrities) have been tested because the US had an insufficient number of test kits. So, it’s an illusion that we are seeing so few people with the virus. (2) They don’t understand the concept of the immense power of exponential spread.Growth_Bar_Graph

The primary reason people are alarmed by the number of infections is the high death rate of people who have been infected. As of this writing, deaths are 11,402 worldwide, while cases are said to be 276,104 (WorldoMeters). Calculated death rates have ranged from 1.4% (the latest, from Wuhan) to 4%.

There are 39 million people in California, and the governor has predicted that about half (19.5 million) will be infected with coronavirus. About 18% of infections are Virus and infection, image illustrationasymptomatic (about 3,500,000 in this scenario). Since the death rate is calculated with symptomatic infections (predicted to be 16 million), the lowest death rate (1.4%) gives 224,000 deaths in Calif. if the governor’s prediction is accurate.

 

David H. Figurski, Ph.D – Molecular Biologist

Columbia University Professor Emeritus

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Brain Injury Resources . . . . . . The Resilient Soul by Karen Leavitt

Brain Injury Ressources

The Resilient Soul by Karen Leavitt

reviewed by

Donna O’Donnell Figurski

 

I am so proud to be an author of a chapter, “Living Nightmare – TBI” in “The Resilient Soul” by Karen Leavitt.

This book shares poignant stories of folks meeting and surmounting their struggles as they face life’s hardships. We are all resilient souls.

 

The Resilient Soul” offers hope and encouragement.

Donna O’Donnell Figurski
author of “Prisoners without Bars: A Caregiver’s Tale”
donnafigurski.com

Learn more here.

SPEAK OUT! Are You Kidding Me?

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Survivors SPEAK OUT! Rod

Survivors SPEAK OUT! . . . Rod

presented

by Donna O’Donnell Figurski

 

Rodney Rod Rawls Survivor 1

Rod – Brain Injury Survivor

 

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

Rod

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

Coeur d’Alene, Idaho, USA

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

April 1, 2016 at age 56

4. How did your brain injury occur?

A motorcycle crash – I wasn’t wearing a helmet, and my head impacted the asphalt when I went over.motrocycle

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

A passing driver called emergency services.

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

I was diagnosed as “brain dead” on arrival at the emergency room. I was placed on life-support, and my family was told they’d keep me on it for 24 to 48 hours.

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

About three and a half hours after I was diagnosed as brain dead, my autonomic functions sparked back up. I was comatose for about six more hours before regaining consciousness.

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 an outpatient for my therapy. I started with speech therapy to address my issues with communication. After two years, my doctor recommended the nearby clinic of a neuroscience institute, where I received occupational therapy and physical therapy. Occupational therapy helped me develop tools and approaches to reduce the negative impact of many of my new disabilities. During my physical therapy, I was able to use a DynaVision system (a light-training reaction device, developed to train sensory motor integration) to help redevelop my visual coordination and improve my balance issues while walking.

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

Rodney Rod Rawls Survivor 3

Rod – Brain Injury Survivor

• Sleep was my first battleground. Mental fatigue after poor sleep could make me completely dysfunctional – for example, unable to form sentences. I also had no buffer for raw emotions. They could make me cry or become angry with no warning and often for no obvious reason.

• Poor balance made me worry that people would think I was drinking. Therapy and a trekking (hiking) pole made a big difference for me. I’m able to go without the trekking pole most days now.

• My light-sensitivity has decreased over these last three years, but I still get overwhelmed all too often from the sounds in a restaurant or any room with multiple conversations taking place.

• My girlfriend calls me “Rod 2.0” because I’m so different. So, yes, my personality definitely changed. I used to watch TV and play video games every day; now I can’t do either one. Instead, I enjoy gardening, painting, sewing, cooking, and crafting – essentially any activity where I am creating something.

• I can no longer do math that has any complexity, and I struggle to read. I am so thankful for audiobooks!

• I’ve lost what I estimate to be upwards of 90% of my long-term memory.

• My short-term and working memory are both very unreliable now.

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

My life is different, that’s all. I am a new person whose long-term memory loss means I carry very little baggage with me. My struggles have changed, but, from the stories I hear about how I was before, my quality of life has most certainly improved.

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

It would be nice to remember things when I try to, but, since I’ve lost most of my long-term memory, I don’t really know what I might be missing otherwise.

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

I enjoy the “in-the-moment” nature of my life as it is now. Mindfulness meditation was so easy for me to learn because it’s how my mind works now. At any given moment, I’d have to work hard to remember what I was doing five minutes ago, and I’m rarely certain of what I’ll be doing five minutes from now, but I am always aware of so much that is happening right now. This is likely a contributor to my high level of sensitivity to chaotic environments.

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

Perhaps it’s the varying judgements I experience. Some seem to think I’m not as bad as I let on. Some express a little too much sympathy or “understanding.” Some base their view of me on my highest-performing moments, so they think I somehow plan when to be dysfunctional. This last one is the hardest, and it comes from those closest to me.

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

I went from being a caregiver for my son when he returned from the military with a TBI (traumatic brain injury) to becoming a TBI-survivor. Without question, he’s the one who has had the most impact on me in this area. My girlfriend is as patient as I could ever hope for – enduring my personality change and my sometimes-volatile emotions. You feel like you can be more normal when someone treats you as though you actually are normal.

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

Getting things done is a huge challenge. The number of uninitiated and half-finished tasks around my home seem to increase over time. I have good spurts when I get one of them done, but ever more are piling up.

Relationships have changed much… I could write a couple of pages on this.

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

I don’t socialize at all any more. I am a caregiver for a mother with dementia, so my time is limited. I spend some time each week with my girlfriend, but that’s about the limit of my socializing.

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

I am my own caregiver. I give special recognition to those in my life who are as patient as they can be with me. I was a caregiver for my son when he came home with his TBI. Back then, I was supportive and non-judgmental, and he’s that way with me now. Through my experience, I realize that I couldn’t come close to understanding what was happening in his mind when I was his caregiver. I think that’s something that only becomes completely clear if you have to go there also.

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

vegetable-garden-vector-id165638080.jpgTen years from now, I’ll be retired – with a dog by my side and, if all goes well, some chickens, and perhaps even goats, to tend. I hope to garden much and preserve enough each year to fill my pantry and to share with others, to cook, and to work in my shop and become better at crafting.

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 suggest you …

  1. … write things down.

I keep multiple dry-erase whiteboards at work and at home to keep track of things. When you schedule your doctor appointment, start your list of questions immediately, and keep it somewhere obvious so you can’t miss it when it’s time to go. (I use a list app on my phone, so I know I’ll have it when I go.)

  1. … be as patient as you can with those around you.

Unless they’ve experienced a TBI, they really can’t understand your struggles.

  1. … set rules with those who you spend time with.

For example, being able to say, “I need some time alone” and being able to find a quiet place without anyone taking it personally, asking after you, or chasing you down. (The latter was a big one for me. I often just need to escape for a short time.)

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

Rodney Rod Rawls Survivor 2

Rod – Survivors of Brain Injury

Develop tools that work for you. I highly recommend doing occupational therapy. That’s where I learned to identify the issues that plague me the most and got solid advice on how to develop tools and strategies that make a difference in my life on a daily basis.

Learn how to eat properly to facilitate your recovery and to support your mental function in the long term.

Work with a trusted medical professional to develop the supplement regimen that is best for you.

Meditate. The single greatest impact on my recovery has come from developing a daily meditation practice. I encourage all brain injury survivors to explore meditation. Meditation is a simple and easy-to-learn practice that has been shown to make physical changes to the brain, and it has greatly helped many brain injury survivors.

 

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SPEAK OUT! Itty-Bitty GIANT Steps

SPEAK OUT! Itty-Bitty GIANT Steps – Nolan McDonnell

presented by

Donna O’Donnell Figurski

Itty-Bitty GIant Steps for Blog

 

 

SPEAK 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 donnaodonnellfigurski@gmail.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.

Nolan McDonnell

 

Nolan McDonnell (survivor) … It might sound small, but I buckled up myself in the wheelchair van for my first time tonight. :

Wheelchair VanMan in wheelchair

 

 

You can learn more about Nolan McDonnell at his website:

Coach Nolan

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SPEAK OUT! Itty-Bitty GIANT Steps

SPEAK OUT! Itty-Bitty GIANT Steps

Itty-Bitty GIant Steps for Blog

 

 

SPEAK 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 donnaodonnellfigurski@gmail.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.

 

jennifer-stokely-survivor-052615

Jennifer Stokley – Survivor of Brain Injury

Jennifer Stokley (survivor) … I met a stranger at my door who was sent to do “bug home care” (no notice). I let him in to do his work. I asked questions and had him explain things I needed to misc_welcome2know. I have Severe Anxiety Disorder and huge panic attacks.  Strangers are a HUGE trigger; letting them into my home is even bigger! I handled it all – no anxiety; no nothing!

 

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SPEAK OUT! NewsBit . . . . . . High School Football Game Forfeited After Nine Head Injuries

High School Football Game Forfeited After Nine Head Injuries

presented

by

Donna O’Donnell Figurski

 

football-teamA high school football team from Moncton, New Brunswick, Canada, forfeited its game after nine players left the game with possible head injuries. The coach took the precaution of having all players checked at the hospital. Before going to hospital, four players had already displayed symptoms of having a serious concussion (nausea, vomiting), and they still showed symptoms two days later when the article was written.

Illegal hits were not the problem, but the violence of football became even more obvious when the forfeiting team was clearly outmatched by its opponent.  The score was 35-0 about halfway through the game.

football13It is now known that players of US and Canadian football have a high risk of developing a brain injury, and the problem is particularly serious for youth, with their still-developing brains.  Concussions are the most obvious brain injury, but the multiple subconcussive hits common in US and Canadian football can also lead to brain damage, which may not become apparent for several years.  A highly-cited research paper in the Journal of the American Medical Association showed that the degenerative brain disease CTE (chronic traumatic encephalopathy) was found in a low but significant fraction (21%) of players who only played football through high school. CTE was more commonly found (>90%) in the autopsied brains of players who played professionally or only through college. Even with a possible bias in the brains studied, the findings are alarming. As a result of the new knowledge, some players are retiring early (1,2), and parents are becoming concerned. (1. Full story and 2. my radio interview of Cyndy Feasel, Mary Seau, and Debra Pyka, all of whom lost a loved one to football)

onair

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To Life – La Chaim! . . . . . . . Hank Figurski Memorial

To Life – La Chaim!

presented by

Donna O’Donnell Figurski

And to death … well, my father-in-law, Hank (Henry) Figurski, did it with grace and dignity.

On January 5th, we said our final farewell to Hank. It was bittersweet. He lived a very long, fulfilled life. He lived surrounded by the love of his family – his sons, his grandchildren and great grandchildren and his brothers and their families. He lived with the dream of someday being reunited with the love of his life, Lydia, in what he believed was the afterlife. We will miss the man that we loved, but his memory will live on in our hearts and our minds.

Hank Figurski La Chaim 111217.png

Another Fork in the Road . . . . . TO Support-group … or NOT TO Support-group

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.

TO Support-group … or NOT TO Support-group

by

Donna O’Donnell Figurski

There are support-groups for almost everything. Probably the most well-known group is “AA” (Alcoholics Anonymous). There are groups for eating disorders, domestic abuse, mental health, physical health problems, such as cancer and diabetes, groups to enhance relationships, and many others. If there is donate-to-us-www-frankiejohn-com-uexc3u-cliparta problem, there is probably a group for folks to join. Groups for supporting brain-injury survivors and their caregivers, family members, and friends are cropping up everywhere. This is relatively new, since little was known about the seriousness of brain injury until rather recently. When the troops began to come home from the Iraq war with serious brain injuries, people started to notice. Then when the deaths and illnesses of so many former NFL players came to light – starting with Dr. Omalu’s finding of chronic traumatic encephalopathy (CTE) in the brain of Pittsburgh Steeler Mike Webster during an autopsy in 2002 – more people took notice.

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Bennet Omalu, M.D, M.B.A., MPH, CPE, DABP-AP, CP, FP, N

Two things you might consider when searching for a support-group are location (Is it within reach? Will you easily be able to get there?) and size (Is it large enough or small enough for you? Too large – you may get lost and not have any of your needs met. Too small – there may not be enough information to share, but it may be easier to connect with folks of the same interest). You will need to comfort-fit your support-group to your needs. If you are unable to join an in-person support-group, don’t fret. There are many support-groups on social media.

My husband’s brain injury happened in January of 2005. As his caregiver, I went it alone … for years and years. I wasn’t aware of the multitude of people who had a brain injury. I was ignorant that there were millions of caregivers like me, and I certainly never realized that there were support-groups for caregivers. It wasn’t until three years ago that I stumbled onto the support-groups on Facebook. I joined many of them, and I have made many good friends there – both virtual (some from across the world) and the ones nearer, some of whom I met in person to share a coffee or a lunch together.

support-group-clip-art-412049There are virtual groups for caregivers. (One is just for spouses or partners of survivors.) There are groups for both survivors and caregivers together. There are groups for traumatic brain injury survivors; for acquired brain injury survivors; or for survivors with ataxia, multiple sclerosis, or stroke. Some of the benefits of support-groups are that folks are more apt to understand what you are going through. Because they share similar issues, they are able to offer emotional support, suggest advice, or provide tips that worked for them. There is a veritable smorgasbord of ideas out there in cyberworld. If you are looking for an online group to hold your hand, hear you vent, or answer your questions, I promise you will find it.

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David H. Figurski, Ph.D. – Brain Injury Survivor

Support-groups are usually, but not always, beneficial. When my husband, David, had his brain injury in 2005, I had little knowledge of support-groups. We went to a local group a few times, but David didn’t find it helpful. In fact, for him, so early in his journey, it was not at all beneficial. He found it difficult to identify with the other survivors of brain injury. Though David was in poor shape physically and was unable to do much for himself, he still felt that his mental health condition was better than that of the others in the group. Being in the group brought David down and left him with little hope. He asked that we not go back, and I agreed. But, unlike this example, many people rely on support-groups.

Because our earth supports more than twenty-four different time zones, there is always someone available to talk with 24/7. That is one of the major advantages of belonging to support-groups on social media, and I am so grateful that I stumbled onto them. I finally knew that I and David weren’t alone. Just in the United States, there are more than five million people living with brain injury. Can you imagine the number if you counted up all of the survivors of brain injury around the world? Astronomical!

giphyIf you are not yet convinced that support-groups can be helpful for you, here are a few more reasons. They empower you. They put you in the driver’s seat to take control of what is happening in your life by helping you to find answers. You immediately become a member of a like-minded group of people who accept you, understand you, and is not judgmental. So, if you feel a support-group would be beneficial to you, by all means find one. They can be wonderful!

So, how do you find a support-group to comfort-fit your needs? If you choose to be a part of an in-person support-group, ask your primary-care provider, your neurologist, a social worker, or your church minister to recommend any groups near you. You may also contact become_a_facebook_fanthe Brain Injury Association of America (BIAUSA.org) and locate your local chapter for your state to find a support-group near you. But, if you prefer the comfort of your home (as I do) and you have nimble fingers, open up your computer and find a Facebook group. There are more than thirty to join. I know … because I am a member of at least thirty. I only wish that I had known about the social media support-groups when David had his brain injury over eleven years ago. With a support-group, you are never alone.

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