TBI – Survivors, Caregivers, Family, and Friends

Read All About It!

Prisoners without Bars: A Caregiver’s Tale

presented by

Donna O’Donnell Figurski – author

Donna & David with ARC of Prisoners without Bars: A Caregiver’s Tale

My memoir, Prisoners without Bars: A Caregiver’s Tale, is not only a story of David’s and my struggles after his traumatic brain injury, but it is also a love story. Though my memoir addresses a dire topic, it is peppered with comedic situations. They say laughter is the best medicine, and again, they are right.

Prisoners without Bars is a heart-wrenching memoir that will make you laugh, cry, and G-A-S-P. I promise!

Boy Laughing

Girl Crying girl-crying-clipart-34

Girl Gasping 2

It’s not a beach read, but it reads like one. It’s fast! It’s easy! It’s fascineasy. I mean fascinating.

What Readers are Saying!

Jackie said – “A beautiful and touching story.”

Anonymous Amazon Customer said – “I loved this book. almost couldn’t put it down.

jlgwriter said – “I found the story powerful and compelling.

Todd & Kim said – “This is such an inspirational story of survival! The book is a very easy read and informative as well as inspiring!!”

Judy said – “Donna O’Donnell Figurski tells her story of grace, love, frustration, anger, disappointment, strength, joy, and above all hope.”

Marge said – “I read it in one fell swoop… I guess the word that would describe your book, your life, and who you are is SUPERCALIFRAGILISTICEXPIALIDOCIOIUS.”

Anonymous said – “This book pulled me in immediately and didn’t let me go until the end! ”

Helen said – “Could not put this book down. Written for easy reading. It was like having a conversation with a friend.” “I finished it in one day with some teary moments along with some chuckles. A must read!!”

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Stay Safe and Healthy!

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Caregivers SPEAK OUT! Jenifer Fallert

presented by

Donna O’Donnell Figurski

  1. Jenifer Fallert CaregiverWhat is your name? (last name optional)

Jenifer Fallert

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

Lake Saint Louis, Missouri, USA

  1. What is the brain-injury survivor’s relationship to you? How old was the survivor when he/she had the brain injury? What caused your survivor’s brain injury?

My brain injury survivor is my daughter, Jordan. She was one month away from her 24th birthday when she was struck by another car as she drove home from work.

  1. On what date did you begin care for your brain-injury survivor? Were you the main caregiver? Are you now? How old were you when you began care?Jordan Fallert

Jordan was in the ICU (intensive care unit) for about 25 days before she was transferred to a regular floor. Thirty days after her accident, she was transferred by ambulance to another hospital (Madonna Rehabilitation Hospital) in Lincoln, Nebraska. Jordan was at Madonna until June 25. She was then discharged to home care. I was Jordan’s only visitor, along with her nurses who cared for her from the time of her admission. Even in the ICU, nurses aren’t able to attend to every need, so I did as much for Jordan as I could. I am Jordan’s primary caregiver, but my role has changed to more of an advisor. I was 47 at the time of Jordan’s accident.

  1. Were you caring for anyone else at that time (e.g., children, parents, etc.)?Young Teenagers Colorful Casual Clothes

I had two other teenage children whom I was caring for at the time of Jordan’s accident.

  1. Were you employed at the time of your survivor’s brain injury? If so, were you able to continue working?

I was employed as the Director of Operations for a preschool at the time of Jordan’s accident. I took a six-month leave and worked part-time before deciding to stay home with Jordan full-time.

  1. Did you have any help? If so, what kind and for how long?

Jordan was injured during COVID, so most of the time that she was in the hospital or rehab, I was the only one helping her.

  1. When did your support of the survivor begin (e.g., immediately – in the hospital; when the survivor returned home; etc.)?

I provided as much care for Jordan as I possibly could. I started immediately after the accident.

  1. Was your survivor in a coma? If so, what did you do during that time?

Jordan was in a coma for about 14 days and minimally conscious for about another month. While Jordan was in a coma or in her minimally conscious state, I did as much as I could to care for her. I read or crocheted a little to pass the time in the hospital and rehab. I was also dealing with insurance companies and the legal entities involved.

  1. Did your survivor have rehab? If so, what kind of rehab (i.e., inpatient and/or outpatient and occupational, physical, speech, and/or other)? How long was the rehab? Where were you when your survivor was getting therapy?

Jordan received inpatient rehab at Madonna Rehabilitation Hospital in Lincoln, Nebraska. She received physical, occupational, speech, and recreational therapies. She also did intensive outpatient therapy at Madonna for another six weeks before coming back home and doing outpatient therapy at SSM Rehab in Lake Saint Louis, Missouri. I moved to Nebraska and lived in a home for caregivers on the grounds of the rehab facility. Once Jordan was released to outpatient therapy, she lived with me in Nebraska until we came home.

  1. What problems or disabilities of your brain-injury survivor required your care, if any?

R-4When Jordan first came home from rehab, she required help with most of her ADLs (Activities of Daily Living). As time has gone on, she has been able to perform most of her ADLs on her own. She has short-term memory loss, so my role is helping to make sure that she remembers things and stays safe.

  1. How has your life changed since you became a caregiver? Is it better? Is it worse?

My life has changed a lot since I have become Jordan’s caregiver. I no longer work, and I spend most of my time with her at home. The thing is that I wouldn’t have it any other way. I have always loved being with Jordan and spending time with her. My greatest joy is being a mother to all my daughters. I’ve gotten to help raise Jordan twice, and that is quite the gift!

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

I miss the daughter whom I knew for 23 years, the relationship Jordan had with her sisters, and the innocence that we all had – the blissful unawareness that most people have that tragedy can strike at a moment’s notice.

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

I enjoy getting to spend so much time with Jordan and helping her grow into the wonderful person that she is.

  1. What do you like least about brain injury?

The emotional and cognitive side of brain injury can be very draining and hard on family relationships.

  1. Has anything helped you to accept your survivor’s brain injury?

No answer

  1. Has your survivor’s injury affected your home life and relationships and, if so, how?

Jordan’s accident, the legal trial, and COVID have had profound impacts on our family. (The other driver in Jordan’s accident was charged with second degree assault. He was driving 79 mph in a 45-mph zone and had a history of aggressive driving. I can’t describe how that feels. His act of violence on an innocent human will reverberate through our lives forever.)Jordan Fallert Survivor

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

We spend more time at home now. Social settings are hard on Jordan’s ability to communicate effectively, which makes her feel very frustrated.

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

I don’t know what I hope to be doing in ten years. Even though it’s been over a year since Jordan’s brain injury, we are still in the early stages. I hope she is more healed.

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

When Jordan was in the hospital, the doctors and nurses would tell me that this is not a sprint; it’s a marathon. That is the truest statement. It takes years and years to heal from a brain injury. Time and patience are key.

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Survivors SPEAK OUT!     Jordan Fallert

by

Donna O’Donnell Figurski

Jordan Fallert

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

My name is Jordan Fallert.

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

I live in St. Louis, Missouri, USA.

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

I got my brain injury on February 5th, 2021. I was 23 years old.

4. How did your brain injury occur?

I got my TBI (traumatic brain injury) from a car crash around 5:30 on a Friday. I had just left work to go home to study for a test for my master’s degree. Studying

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

What saved my life was that a fire truck had responded to a fire on that same road. They were told their backup was no longer needed. Their captain (who was in an SUV, not the fire truck) saw the crash happen. I was unconscious on impact, and they had to use the “Jaws of Life” to get me out of the car. After I was rescued, they took me straight to the hospital to have emergency surgery. I was in a coma for six weeks. I slowly gained consciousness and became aware pretty quickly that I was in the hospital, but I had no idea why. That was my biggest indication that something was wrong. Also, I couldn’t walk, and I had extreme right-side weakness.

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

After I was rescued from my car and in the ambulance, the firemen realized very quickly I was having extreme difficulty breathing. I was hit on a road that had a speed limit of 45 mph. I was turning onto the road and going about 12 mph, and the other driver was speeding and going over 60 mph. Even though I was going so slowly, the force of the impact caused my diaphragm to rupture, my lungs to push on my stomach, and my stomach to push on my heart. Once I was at the hospital, I was immediately taken to the trauma floor. I was in surgery for about six hours.

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

I was in a self-induced coma for about six weeks.

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?

Yes. I did a lot of rehab. I was in the hospital for about four months. As soon as I was conscious, they began putting me into rehab. I did speech, occupational, and physical therapies. After I was released from the hospital, I stayed with my mom in a house on the hospital campus and did intense outpatient therapy. And when I came home, I did more therapies at a hospital near me. It’s difficult to say how long I was in rehab, but I would guess about nine months.

9. What problems or disabilities, if any, resulted from your brain injury
(e.g., balance, perception, personality, etc.)?  wearing-specs-retro-cartoon-girl-teen-vector-illustration-148518868

My vision is one of my biggest problems so far. I go to a neuro-ophthalmologist to help combat my double vision. I have had some personality changes that my mom would probably agree with. But I would consider a lot of these “personality changes” to be normal for a very intelligent 24-year-old who had the whole world going for her. Someone else’s actions took that away. I also lost my independence.

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

My life has changed, but I wouldn’t say it’s better or worse; it’s just different. (I personally have really tried my best to think like that.) My life has changed in that I have to rely on people a lot more than I am comfortable with. I got a car for my 16th birthday (almost ten years ago), so I’ve always been able to go places and do things without having to ask other people for rides and things like that. It feels like I was knocked down a peg or two.

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

This is a bit of a complicated question for me. My life was in such a weird place when my crash happened. Courses all went online because of COVID. I had to come home–exactly from my undergrad degree. I continued with a job where I had my internship at, but I hardly saw my friends because of COVID. They were all in different cities in the US, and we couldn’t really travel. So I guess what I really miss are my college years because those are the most recent and foremost in my mind. Because of the accident, I have retrograde amnesia. So I don’t remember anything from about two years before.

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

Jordan Fallert & CavapooBefore my accident, I was on a breeder list to get a cavapoo puppy. I was sixth on the list, and a litter was born in May 2021. Some people skipped on this litter of two (the Tom and Jerry litter), so I was able to have my choice. I chose Tom and renamed him Brew. He has been my saving grace after my brain injury. He’s my best friend and constant companion. I don’t know what I’d do without him.

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

I don’t like feeling weak. This right-side weakness has been an uphill battle to deal with. But it’s getting better.

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

My parents have really been my saving grace. They have never given up on me and never make me feel like I am limited. If I want to do something, they encourage me and help me do it.

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

I continue to live with my parents since my brain injury. I was living with them before due to COVID. My parents have been nothing but great. But I have had a lot of friendships wither and decay, which has been hard in and of itself.

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

Yes and no. I didn’t have a social life before the accident because of COVID. After the crash and when I came home, I had some friends come see me at my house, but they slowly drifted away. It’s hard when you can’t drive, so you are always having to ask others to drive up to see you or drive you somewhere.

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

My main caregivers are my mom and my dad. I do not understand–and hope to never understand–what it takes to be a caregiver. I just know that they are the strongest individuals I know.

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

My plans are very fluid and always changing. I recently (less than a month ago) got my license, and last week, I was able to buy my own car. With these changes, my attitude and outlook have drastically improved. I feel like I can conquer the world if I have this outlook. A Traumatic Brain Injury won’t keep me down and will not limit me. I won’t let it!    R

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 was always angry that my brain couldn’t heal faster, but my mom kept reminding me that it’s not like a broken bone. It’s an organ that controls your entire body, so give it time to heal.

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 take your anger out on your caregiver(s). They want to help you get your life back. Hug everyone tighter, and tell them you love them. A brain injury will only limit you if you let it.

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Caregivers SPEAK OUT!     Greg Payan

Caregiver & Author

by

Donna O’Donnell Figurski

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1. What is your name? (last name optional

Greg Payan

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

As I write this, I’m currently in Bethany, West Virginia. Since the pandemic started, I’ve been dividing my time between here and Forest Hills, New York.

Email? (optional)

Gscp54@yahoo.com

3. What is the brain-injury survivor’s relationship to you?

My care-recipient was my long-time girlfriend, now my wife. 

How old was the survivor when he/she had the brain injury?

My wife, Holly, was 39 when her aneurysm ruptured. 

What caused your survivor’s brain injury?

We had no forewarning. Holly went to bed the night before, maybe with a dull headache. She woke up in the early morning hours in tears and unable to move. She had a seizure before being loaded into the ambulance and brought to the hospital.

4. On what date did you begin care for your brain-injury survivor? Were you the main caregiver? Are you now? How old were you when you began care?

I became Holly’s caregiver once she left the ICU (intensive care unit) and was transferred to rehab. As her rehab center was concerned about liability for her wearing a portable defibrillator due to her heart failure during her rupture, I was at her rehab many hours a day. I was responsible for many things they did not do due to liability concerns. After Holly had been in rehab for two weeks, I largely took over her care. I had some help from my parents as I slowly transitioned back to my job.

5. Were you caring for anyone else at that time (e.g., children, parents, etc.)?

No

6. Were you employed at the time of your survivor’s brain injury? If so, were you able to continue working?

I was employed at the time, and my employer was extremely flexible and understanding of the situation. I was given as much flexibility as I needed until my wife had fully recovered.

7. Did you have any help? If so, what kind and for how long?

My parents were critical in helping, particularly as Holly had complications with hydrocephalus (swelling on the brain) resulting in multiple shunt surgeries. Also, her friends helped when they could. I’d give medication schedules and instructions, and they would spend the day with her when I had to work. We dubbed them “brain-sitters.”

8. When did your support of the survivor begin (e.g., immediately – in the hospital; when the survivor returned home; etc.)?

Immediately. Holly was unconscious for the first 24 hours but woke up in a panic with a tube down her throat the following day, so you could imagine her state. I had to calm her down as best I could. The essential thing was that, when she woke up, she recognized me. I gave her a pen and paper, and she was able to write things down. I saved those notes, and they appear in a book I later wrote.

PLEASE STAY by Greg Payan

9. Was your survivor in a coma? If so, what did you do during that time?

Just for a day. I have a difficult time remembering what I did. I was pretty much in shock. I did leave the hospital that night and tried to get some sleep, but I think I was just numb from trying to imagine if life would ever be the same.

10. Did your survivor have rehab? If so, what kind of rehab (i.e., inpatient and/or outpatient and occupational, physical, speech, and/or other)? How long was the rehab? Where were you when your survivor was getting therapy?

Holly did two weeks of inpatient rehab. I went there daily while trying to work as well. My job was about 40 miles away, and I had to deal with New York City traffic, so those days were long. They were good and kind to Holly in rehab, but, as mentioned earlier, Holly had to wear a portable defibrillator after having heart failure in her initial bleed. Rehab would not touch the defibrillator to charge the batteries or clean it for liability fears. Additionally, the biggest problem was that the sensors on it would often shift. If they shifted, there would be a warning signal because the defibrillator was detecting what appeared to be an irregularity. If you did not reset it within 30 seconds, it would give Holly a shock large enough to restart her heart, even if she was just sleeping and doing fine. That was, by far, the most unsettling thing during rehab.

11. What problems or disabilities of your brain-injury survivor required your care, if any?

Aside from helping her out after numerous surgeries from her shunts and just general help during those times, she has made a miraculous recovery.

12. How has your life changed since you became a caregiver? Is it better? Is it worse?

Greg Payan & Holly

I believe life is better. I think my wife and I connect better. She sees me differently. We dated for 11 years prior to her bleed, but we got married soon after her recovery. I cherish calling her my wife.

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

Peace of mind. I thought tragedies and horrible life-events happened to others – that I’d have a pretty good life, live to old age, and die of natural causes. My life and the lives of my family members have been blessedly free from tragedy or heartache until my wife’s brain-bleed.

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

Not taking things for granted any more.

15. What do you like least about brain injury?

I worry a lot. Less so, in recent years. I think some of my worrying has to do with the hypertension I’ve been diagnosed with in recent years. In the first three or four years, I was a mess any time Holly had a headache or felt the slightest bit off.

16. Has anything helped you to accept your survivor’s brain injury?

Not really

17. Has your survivor’s injury affected your home life and relationships and, if so, how?

Thankfully, it has not. I truly believe we made it out the other side stronger – with a better understanding of what we meant to each other.

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

No

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

I think at some point, we should go back for a scan to see if any other aneurysms are developing and just to see how Holly’s doing. She had multiple shunt revisions over a period of 18 months. They were basically annual follow-ups during which we hugged our neurosurgeon and his assistant and said we’re fine. Since then, we’ve just been living life. I fear at some point Holly’s shunt will eventually fail again. They are notorious for doing such. I imagine Holly will start to develop some headaches and we’ll have another surgery down the road. I’m dreading that, but I guess it’s minor in the scheme of things.

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

I almost feel a bit of “survivor’s guilt,” even though that’s not exactly the right term. My wife has made a full recovery that she had no right to make after a grade-4 bleed. Holly was a teacher at a college, and nobody would have thought she could return to it – but she did. Her good outcome is a combination of luck and the skill of her neurosurgical team. I see so many survivors of brain injury who suffer post-TBI (traumatic brain injury) through life and relationships, and I can do nothing but wish them peace in everything. I am truly awed by how strong they are to face the world each day with the myriad of problems that I see them going through in the various online support groups that I am a part of. I can’t offer advice. I can only say their strength inspires me.

Find Greg Payan’s book, PLEASE STAY wherever books are sold.

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Survivors SPEAK OUT!     Bill Gasiamis

Stroke Survivor & Podcaster

by

Donna O’Donnell Figurski

Bill Gasiamis

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

Bill Gasiamis

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

Melbourne, Australia

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

My stroke happened on February 12, 2012. I was 37.

4. How did your brain injury occur?

It was caused by bleeding of an AVM (arteriovenous malformation).avm-clipart-1

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

It was seven days before I took any action about it.

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

I was in hospital for seven days. After six weeks at home, my brain bled again (March). It bled again in November 2014, and then I had surgery.

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?

I had inpatient rehab for one month and out-patient rehab for six months. I had to learn to use my left side again and learn how to walk.

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

I have numbness on my left side. Fatigue is a problem. I have minor balance issues when I am tired.

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

Life is better. It’s more complicated because of what happened but my personal growth has been huge.

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

I miss playing running-sports, like soccer.R-2

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

I have a new appreciation for working on things that are hard and take a long time to complete.

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

Sometimes, I wish I had more energy.

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

I was helped by lots of counselling.

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

It has, but for the better. By my own standards, I am a better person than I used to be.

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

No

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

I don’t have one. (I am my own caregiver.)

03 BILL GASIAMIS mage-1024x998-118. What are your plans? What do you expect/hope to be doing ten years from now?

I intend to continue to interview stroke survivors on my podcast, to speak on stroke-related topics, and to write books on stroke recovery.

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.

Survivors need to understand that emotional recovery is a very important part of recovery. It is often overlooked. Emotional recovery supports both the physical and mental aspects of a survivor’s recovery.

R20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?

Take responsibility for your own recovery, and learn to put your energy into solutions instead of focusing on the problem.

Get Your Copy Now!

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Stay Safe and Healthy!

Clip Art compliments of Bing.)

(Photos compliments of contributor.)

As I say after each post:

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

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Survivors SPEAK OUT!     Casey Chaffey

Living and Dealing with Chronic Pain

by

Donna O’Donnell Figurski

Casey Chaffey 1

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

Casey Chaffey

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

Kentucky, USA     iluvtkj@yahoo.com

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

In 1998, at the age of 22, migraines had become a part of my life.

4. How did your brain injury occur?

Besides the severe head-throbbing, the migraines were often accompanied by nausea, vomiting, extreme sensitivity to light and sound, mental confusion, and more. I gave up caffeine (including chocolate), dairy, and gluten to try to reduce as much inflammation as possible. After being passed from doctor to doctor, I was diagnosed with a vestibular imbalance. That did not improve, even with almost a year of physical therapy, and it became the scapegoat for all of my symptoms.

A few years later, the pain changed from an unwelcome visitor to a permanent resident. Even on my migraine-free days, I still had a persistent headache. Dizziness, blurred vision, fatigue, and constant light-sensitivity decided to join the party as well. Fifteen years after my migraines first started, I was spending about five days a week in bed, and prescription medication was required for me to complete simple daily activities. Finally, after trying more than eighteen different prescriptions and seeing ten different doctors, I had a diagnosis. A fairly large cyst had been growing in the middle of my brain and putting pressure on my optic nerve, which is what caused the vision issues.Migraine

When I was 38 years old, a neurosurgeon removed the cyst. Recovery was not easy or quick. I had double vision for more than four weeks. My brain felt exhausted all the time, and I could not look at any screens (TV, phone, or computer). I had a panic attack for the first time in my life. I had to rest a lot. And my hypothalamus was damaged.

However, the moment I woke up from surgery, my constant headache was gone. I no longer felt and heard my pulse in my head. I went from migraines five days a week to six or seven days a month. My dizzy spells rarely show their unwelcome face anymore. I still have limitations and light-sensitivity, and I am always in some level of pain. My blurry vision will occasionally return, and an MRI (magnetic resonance imaging) in 2019 showed evidence of a small stroke at some point. In spite of that, I am thankful for how far I’ve come.

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

See above.

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

I’ve had treatments, but I didn’t go to the Emergency Room of a hospital.

There are two types of brain injury. Traumatic brain injury is caused by an external force, like a blow to the head or an object passing through the skull. A non-traumatic brain injury is caused by internal factors, such as a lack of oxygen or pressure from a tumor. I had both a cyst that put pressure on my brain for many years (non-traumatic). Surgical tools that were used to get to the center of my brain to remove the cyst (traumatic).

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?

I did not do any clinical rehab. My husband helped me go for walks, even when I didn’t want to. We started by just going to the end of our short driveway and back. We slowly worked our way up to crossing the street and then circling our small cul-de-sac. When we decided to attempt a loop at the park, I eventually made it. As I continued to push through, the distances grew.

When I was one day shy of being three-months post-op, I stood at the starting line of a half marathon in Nashville, Tennessee. I obviously could not run, but it was possible to walk 13.1 miles in the four-hour time limit, so I was going to try. It was one of the most difficult things I have done, but I crossed the finish line just under the wire.narathon

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

Looking at computer and phone screens for extended periods of time increases my migraines. I still have to rest more than healthy people, and my vision will get blurry if I do not rest in time. Socializing exhausts me, and I often spend the next day in bed with a migraine. Since my hypothalamus was compromised during surgery, I experience frequent hot and cold flashes. (The hypothalamus helps regulate the body’s core temperature.) I get overheated and feel like I cannot breathe, but when I take just my socks or sweatshirt off, I can start shivering and feel chilled to the bone within a minute or two. I used to love the heat of summer, but now it makes me sick if I spend much time in it.

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

My life is immensely better than it was the few years before my surgery. At that point, I wasn’t really living; I was simply existing. I have been able to offer advice and encouragement to others who were going to undergo brain surgery. Without my experiences, I would not have had those opportunities. I also recently published a book called 30 Days to Understanding Chronic Illness and Pain.Casey Chaffey 2

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

Besides just feeling healthy, I used to be active and fit. Working out gave me an energy boost and made me feel better, like it is supposed to. Now, I still try to exercise and I love hiking, but those things exhaust me. I often have to nap right afterward, and physical exertion can make my head hurt and feel foggy.

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

Besides my brain injury, I have other chronic illnesses. I believe that if I want people to understand, then it is my job to teach them (with patience and kindness). Of course, not everyone is willing to listen; but if I do not at least try, then I am not even giving them the opportunity. Navigating through the limitations and suffering can be discouraging. In addition to the symptoms themselves, the stigmas and misconceptions may seem insurmountable. My goal for my book is for it to be an easy and informal read that covers a wide range of topics, including invisible illnesses, cost, guilt and loneliness, fatigue, brain fog, pacing, prevalence, and more. My hope is that it will help me help healthy people gain a better understanding of what life with chronic illness and pain is really like, while also offering support and encouragement to those who are struggling. 

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

See above.

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

No answer

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

No answer

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

See above.

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

No answer

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

See above.

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.

this little girl has something to say

I wish I would not have stayed silent about my struggles for so long. I used to avoid talking about my pain and the journey that I was on. I do not like to complain, and I know that everyone has challenges in life. But as I slowly began to open up, people came out of the shadows. I realized that I was not alone in feeling alone and that others were going through the same or similar things. When we keep our suffering to ourselves, it can steal our entire focus and limit outside interests and distractions. This can lead to feelings of hopelessness, resentment, or loneliness. There is no shame in seeking therapy or other support to help you develop coping skills. While you may not be able to control the pain or limitations themselves, you can take control of how you deal with them. 

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

Rest is not laziness, and pacing is vital. We live in such a fast-paced world, and there is always so much to do. One of the hardest lessons to learn is to slow down because you cannot do everything that you used to. It is easy to feel guilty, lazy, or left out. It is difficult to leave projects unfinished and to stay home when everyone else is out having fun. But once your body informs you that you are overdoing it, you need to rest and stop comparing yourself to others. When you rest because your body is weak, you are not wasting time doing nothing. You are doing exactly what you need to do. You are recovering.

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Long COVID – a Serious Long-term Effect of Some COVID-19 Infections


by


Columbia University Professor Emeritus, Dr. David Figurski

presented by

Donna O’Donnell Figurski

(Disclaimer: The World Health Organization <WHO> has officially named the new coronavirus as SARS-CoV-2 <severe acute respiratory syndrome coronavirus #2> and the disease it causes as COVID-19 <coronavirus infectious disease of 2019>.  Because the majority of people, including most of the press, commonly refer to the virus as “COVID-19” or “COVID,” to avoid confusion, I use “COVID-19” as the name of the virus.)

David Figurski

David H. Figurski, Ph.D & Survivor of Brain Injury

Finally – the news I’ve been waiting for!

Bottom line: The news is good … if you’re vaccinated.

Dr. Daniel Griffin, a Columbia University infectious disease physician, has said that long COVID is a public health crisis.  Several million people worldwide are living with the mysterious, often disabling, ailments of long COVID.

What is long COVID?

Everybody knows about the acute phase of COVID-19 infection. Some infections are serious and require hospitalization – and maybe intensive care. However, infected people and even the survivors of hospitalization seem to fully recover. They feel fine and test negative for the virus.coronavirus_PNG38

But weeks or months later, people who appear to have recovered from a COVID-19 infection may experience any one or several symptoms, which include fatigue, severe headaches, brain fog, anxiety, depression, muscle pain, cough, fever, cognitive impairment, joint pain, chest pain, shortness of breath, vertigo or loss of balance, memory issues, rash, heart palpitations, and sleep issues.

What’s worse – the symptoms can persist. No one knows when the symptoms will end. Some long COVID patients worry that their symptoms will be lifelong. Society needs to be ready for many more disabled people.

Scientists and doctors don’t know the cause.

Particularly worrisome is the fact that even asymptomatic and mild infections can lead to long COVID. Since vaccination still permits asymptomatic and mild infections but prevents the severe infections that require hospitalization, I have been concerned that long COVID can still occur with vaccination. Now it’s clear that vaccination prevents long COVID too.

Because long COVID occurs weeks or months after a COVID-19 infection, it took a while for the data on vaccination and long COVID to come out.

apps.31154.13510798883188545.eeff598f-9fb6-4eae-b36b-53296e4adb2eA recent paper submitted by an Israeli group showed there is a significant reduction (an appropriately conservative conclusion for data that showed 0 cases of long COVID) if a person was vaccinated before getting infected.  In contrast, with no vaccination, about half of hospitalized COVID-19 patients will get long COVID. Vaccination after getting COVID-19 helps: Vaccination within 30 days of COVID-19 infection helps reduce the incidence of long COVID significantly. Getting vaccinated 30-60 days after COVID-19 infection helped, but not as much as within 30 days. Getting vaccinated after 90 days post COVID-19 infection does not help.

You can listen to Dr. Griffin talk about long COVID in two short segments – minutes 38:25-41:30 and 47:25-50:15 – of his clinical update in the video podcast (TWiV #856 – This Week in Virology by Columbia virologist Dr. Racaniello.

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Survivors SPEAK OUT!     Karina Seda

by

Donna O’Donnell Figurski

03 Karina Seda

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

Karina Seda

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

I live in Orlando, Florida, USA.     Email: livingwithoutlimitswithkarina@gmail.com

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

My brain injury was in 2008 when I was 15 years old.

4. How did your brain injury occur?

After surgery, my intracranial pressure rose and caused a hemorrhagic stroke. (An artery popped.)

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

Regarding the stroke, everything happened in the hospital, so the nurses were the ones who identified it. But if we go a few years back, my journey began when I was 12 years old and was diagnosed with an aneurysm.

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

I was rushed back to the operating room, and they used the defibrillator twice to bring me back. They also opened my cranium again to stop the bleeding. R

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

Yes. I was in a coma for two weeks.

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 took in-patient rehab for one month and out-patient rehab (occupational therapy, physical therapy, speech therapy, and health guidance) for around four years – until my insurance reached its limits.

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

I had lost all movements of the left side of my body, including speech, and my eyes were stuck facing a single direction.

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

Everything changed, including career, eating habits, social activities, and desires. However, everything changed for the better: I am living with a purpose, married with my soul mate, and helping others to be the best version of themselves.

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

I miss my social life and my friends.

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

I enjoy being able to see life at a young age with a completely different point of view. I like living with gratitude, admiration, compassion, and wisdom.

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

I don’t like the headaches.144-1447424_migraine-cartoon

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

I realized that everything happened with a purpose.

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

I’ve been affected by seeing how my situation changed the people around me and by how they treated me.

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

24 Karina SedaYes. In the past, if anyone called up to do something or to go somewhere, I could easily say “Yes.” It was hard to adjust to a life where I could not. Also, I try to do everything myself, but it is a bit hard whenever people try to help when I really don’t need it.

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

At the beginning, my mother was my caregiver. But now, I am my own caregiver. Yes, it takes a lot of passion, patience, and dedication to help some who, at the time, cannot help themselves.

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

I hope to keep living in the best version of myself and to be living my purpose. And I expect to keep working on my recovery. I also want to be helping others in a transformational way so they also can do the same.

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.

It was very frustrating to be living in suffering for a long period of time by myself. Having the right support, accountability, and system can be a tremendous help in working towards recovery.

15 Karina Seda Banner Living Without Limits20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?

Never give up! It is never too late to reintegrate into life in a healthy way and work towards recovery.

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COVID-19 Omicron Variant is Not Less Severe

by
Columbia University Professor Emeritus, Dr. David Figurski
presented by
Donna O’Donnell Figurski

 

(Disclaimer: The World Health Organization <WHO> has officially named the new coronavirus as SARS-CoV-2 <severe acute respiratory syndrome coronavirus #2> and the disease it causes as COVID-19 <coronavirus infectious disease of 2019>.  Because the majority of people, including much of the press, commonly refer to the virus as “COVID-19” or “COVID,” to avoid confusion, I use COVID-19 as the name of the virus.)

David Figurski

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

The omicron COVID-19 variant should be respected as much as any other form of the virus. U.S. deaths are higher than from the delta variant at its peak.

I’ve heard it suggested that letting yourself get infected with the omicron variant is a way to become immune to COVID-19.

RColumbia virologist Dr. Vincent Racaniello discusses the “mildness” of the    omicron  variant with Dr. Daniel Griffin, a New York physician in Columbia’ s Department of Infectious Diseases. Listen to minute 15:00-16:10 of Dr. Racaniello’s TWiV (This Week in Virology) podcast #859, which is also Dr. Griffin’s clinical update #99.

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Survivors SPEAK OUT! Dawn Wasserman Corbelli

 presented by

Donna O’Donnell Figurski

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

Dawn Wasserman CorbelliDawn Corbelli

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

Colorado Springs, Colorado, USA      corbelli@q.com

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

February 13, 2008

At the time of the accident, I was 39 years old, and my daughter, Veronica, was 15 years old.

4. How did your brain injury occur?

Car accident

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

The day of our car accidentR-4

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

I was hospitalized. There I had X-rays and a CT (computerized tomography) scan. Staples were put in my head, I had to use a catheter, and I was given morphine.

My daughter had exploratory surgery, X-rays, an MRI (magnetic resonance imaging), life-support, and many other things that I do not know because I lost my memory for seven weeks.

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

I was not in a coma.

My daughter was in a coma for two weeks and one day.

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 did speech, occupational, and physical therapies – inpatient for two weeks and outpatient for months.

My daughter was in speech, occupational, and physical therapies – inpatient for six hours/day for 2½ months and outpatient for over a year. She had physical therapy on and off throughout the years since our accident (almost 14 years ago now). She also participated in manual therapy in which specially trained therapists put pressure on muscle tissue and manipulate joints in an attempt to decrease back pain caused by muscle spasm, muscle tension, and joint dysfunction.

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

Dawn Wasserman Corbelli 2My disabilities are memory loss, lack of comprehension, decreased cognitive speed, balance difficulty, vertigo, a very short temper, and extreme mood changes. I became more depressed, and I now suffer severe anxiety. I have bipolar disorder that has been exacerbated due to my moderate brain injury. When driving, I would sometimes forget where I was, where I was going, and why. It happens less now, but it still happens. My math skills have become extremely poor. I couldn’t read for years; I read like a five-year-old trying to put words together. I am capable of reading well now.

My daughter has a severe traumatic brain injury (TBI). She has a sheared brain stem that causes trouble with swallowing. (She frequently chokes on her own saliva.) She was paralyzed on her left side, but she now has full use of it. She has severe short-term memory loss, and she also suffers from long-term memory loss. (She has forgotten the three months before our accident and the three months after.) Her cognitive speed and the speed of her speech has been affected, but not to a great extent. She cannot run due to her previously paralyzed left side. She has a great deal of chronic pain. She broke her pelvis in eight places, both of her hips, and her left ankle, all of which cause her pain daily. She cannot stand in one place for more than a few minutes. Her left ankle swells up. She has balance issues.

Because my daughter’s hypothalamus was damaged, she gained 4.5 pounds a week after leaving the hospital until she gained 70 pounds, which she still carries today. Her body thermometer is also broken. She is hot all the time and doesn’t even wear a coat in 30-degree weather. Her personality is sexually perverse. Her mind is frequently on sex and, with very little filter, she speaks frequently in a sexual manner, but it is much better than it used to be. She is quite impulsive, and she has poor decision-making skills, which can sometimes leave her in danger. For years, she would take off her shirt in public to show her breasts. When we are there to guide her, we can keep this from happening. She takes things very literally. If someone makes a suggestion that is inappropriate, she will take it seriously. She does what her friends do (for example, not wearing a seatbelt). She has a severe mood disorder. Sometimes severe anxiety makes her cry for long periods of time. She is on medication. Sometimes it works, and sometimes, not. So we have been going through med changes for the past couple years.

Note: She was very stable pre TBI.

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

We are deep believers in the Lord and believe that everything happens for a reason. Now we cannot imagine our life any other way. For many years, we lost all of our friends, and we were very lonely. But we always had each other and became best friends. Life with a brain injury is very difficult. But we have always seen and appreciated our blessings and have learned to find joy in every day again. Our faith brought us through and carried us when we couldn’t carry ourselves.

Veronica believes life is better because many blessings came from our injuries. Our lives are not really “better” or “worse”; it is as God has planned. He gives us the strength to get through any situation, and we do what we have to do even during the difficulties. Veronica believes she is a better person and is much closer to God now. My bipolar episodes are worse now, but, thankfully, I do not have them very often.

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

I miss my very sharp thinking. I am slower, and there are many things I just do not understand without them being explained to me in a different way – with the use of different words now.

My daughter misses having stable moods. She does not have the independence she always dreamed of. She lives at home, cannot drive, and cannot work. Since she was 10 years old, she knew she wanted to go to college at ASU (Arizona State University); join the Air Force, like her parents did; and

12. What do you enjoy most in your post-brain-injury life?Dawn Wasserman Corbelli Family

I enjoy my family. I enjoy staying home with Veronica. Who wouldn’t want to raise their child twice if given the blessed chance?

Veronica enjoys spending time with her boyfriend most.

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

I dislike that I forget so much and that it sometimes frustrates my husband.

Veronica hates her deficits, especially the short-term memory loss, the anger, and her labile moods.

14. Has anything helped you to accept your brain injury?smart-cartoon-clipart-1

After 12 years, I saw a wonderful counselor who taught me that my deficits have nothing to do with my intelligence.

For Veronica, the fact that her family and friends accept her brain injury helps her accept it. Her boyfriend did not know her pre injury and loves her just the way she is. 

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

Yes. My husband and older daughter are very protective of us now. We all worry that if we can’t get a hold of each other, the one we are trying to get a hold of is on the side of the road dead in a car accident.

Being sexually perverse and very touchy feely, Veronica ended up being raped twice by different people we knew. That ended friendships, of course.

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

For many years, we had no social life or friends outside of our family. Veronica and I were very lonely for friends and ever so grateful every day that we had each other. We prayed for a very long time – years – for new friends to come into our lives, and they eventually did. A family (the husband is Greg’s best friend); the wife is my best friend, and their grown children and their families are Veronica’s best friends. We spend evenings, a week, and often a day on the weekend with this family. And after eleven lonely years, Veronica has a boyfriend again.  

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

I am Veronica’s main caregiver, but my husband and I both are co-guardians of Veronica.

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

My husband will be retired, and we plan on doing some traveling. I hope to be promoting the book I recently published and maybe another.Dawn Wasserman Corbelli Book

Veronica hopes to be moved out, with a man (maybe this boyfriend), and not be living at home.

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.

Use Google maps so that if you are driving and you forget where you are, where you are going, and why, at least you will know where you are.

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

The biggest problem daily is memory loss. I have learned how to manage it pretty well on a daily basis. Write everything down that you want to remember. Keep paper in every room of your house and in the car if you drive. Be responsible for your own notetaking. That way you cannot blame anyone else for your forgetfulness. Put notes anywhere they will help you remember. Put them in the kitchen on the counter, taped to the microwave, in the bathroom, on the toilet seat, or on the steering wheel of the car if it will help.

If a brain injury survivor’s loved ones do not accept the new person he or she has become, neither will the survivor accept himself or herself. So, survivors, allow yourself to grieve, but don’t ever say, “I miss the old you.”

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