TBI – Survivors, Caregivers, Family, and Friends

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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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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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I am so honored to be featured on Sue Bavey’s website, Sue’s Musings – Indie Spotlight. Sue features authors to take a glimpse into their journey to publication. Each story is different and intriguing. I hope you will find my story interesting and that you will take the time to read my book, PRISONERS WITHOUT BARS: A CAREGIVER’S TALE. I’ve been told it will make you laugh, cry, and G-A-S-P! Please let me know if you did any?

donna o’donnell figurski – author

Prisoners (print) Amazon US Paperback
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Survivors SPEAK OUT! Gail Waitkun

 presented by

Donna O’Donnell Figurski

24 Gail Waitkun 3 105769029_10221153417692680_1997538277250787609_n

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

Gail Waitkun

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

Portland, Maine, U.S.A.

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

February 25, 2015

At what age?

60

4. How did your brain injury occur?

It was the tipping point of twelve head injuries incurred over my life. The first eleven were sports-related; the last was a seemingly innocuous jolt of my head (whiplash).whiplash-583bc2a7e4b74

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

I realized I had a problem soon after my accident, although I drove home. The desk manager at the car repair place suggested I be seen by a doctor. I did not think I was acting any differently … but, apparently, she did. I then decided I should probably go to the hospital. I lived alone, and there was no one to assist me.

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

I was seen at Mercy hospital where I was given an MRI (magnetic resonance imaging) and diagnosed with a grade 3 concussion. (A severe concussion, lasting longer with greater impact. A grade 3 concussion is generally considered the most severe of this type of traumatic brain injury.) There was no treatment. I was actually allowed to leave and drive myself home!

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

No

8. Did you do rehab?

Yes

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 initial evaluations/meetings and perhaps four weeks of testing and rehab. There were an occupational therapist, a physical therapist, and a neuropsychiatrist. I did not meet with any one of them more than three or four times. As my insurance time was dependent upon my schooling participation (I was completing a nursing degree), I had only the time afforded by my contract.

411-LKXRQhL._SX311_BO1,204,203,200_9. What problems or disabilities, if any, resulted from your brain injury
(e.g., balance, perception, personality, etc.)?

The following is edited information taken from my book: Heal Your TBI.

  • Altered sense of smell
  • Altered taste
  • Anxiety; feeling “hot-wired” comes and goes
  • Balance problems
  • Body temperature fluctuation (too hot, too cold)
  • Difficulty with conversations (hard to follow, respond in the moment, or connect thoughts and ideas)
  • Dizziness
  • Difficulty focusing on a single task
  • Eye problems, blurred vision, floaters, changes in vision, light sensitivity, night vision challenges
  • Headaches
  • Highly emotional
  • Inactivity, lethargy, no energy
  • Indecisive
  • Isolation (self-imposed)
  • Lost career and relationships
  • Loss of smell (I did not realize to what extent this was for me until I was tested.)
  • Loss of taste (I did not realize to what extent this was for me until I was tested.)
  • Hypersensitive to hyper-stimulation
  • Impulsive; saying whatever comes into my mind
  • Inability to drive
  • Loss in confidence
  • Memory problems
  • Overstimulated; can’t fall asleep
  • Pain (unexplained)
  • Personality changes; cranky, sad, depressed, angry, craving solitude (not normal)
  • Problems in judgement
  • Peripheral vision problems
  • Sadness
  • Sleep issues; sleeping constantly on and off, difficulty staying asleep, restlessness, baddreams
  • Sleepy – off and on throughout the day
  • Stuttering and slurred speech
  • Trouble holding onto new information
  • Trouble making or holding eye contact whenspeaking
  • Trouble remembering important daily information (e.g., if I paid a bill)
  • Weight gain, change in the brain and gut connection
  • Errors in writing things, spelling issues, mathissues/executive functioning skills compromised

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

My life is better. It has been enhanced by my brain injury and the necessary steps I had to take to move forward. My life has changed, as now I feel a sense of purpose and I have been given a gift of service. There is much to be done in this area.gift-clipart-animated-8

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

I miss my ability to process information quickly – thinking and responding in the moment. However, this improves with every opportunity I have to interact.

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

I enjoy my newly acquired purpose, commitment, and confidence; an ability to persevere without caring about what other people think; my newfound knowledge; and an ability to help others.

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

I dislike my injury, but my subsequent challenges were a gift.

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

Yes. Important were my attitude and my mindset about what my brain injury has presented in the form of an opportunity to help initiate important changes.

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

My brain injury has absolutely affected relationships! It has enhanced many relationships and has helped “separate the wheat from the chaff.” As with all significant life-events, my injury has a way of helping me see things more clearly. This will happen for you if you are open to accepting the changes and using your creativity and appreciation for the opportunities these events offer.

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

My social life was indeed changed as I lost my ability to remain on my planned path. Those individuals in my profession carried on … as they should have. As they were involved in a career that was particularly constraining in allowing them to have a social life outside of their colleagues and career, I fell out of touch with them. Now, I have developed new interests and goals. This new career path has placed me in the company of others who are on a similar path – one that assists those who are in need. So my circle of friends has expanded in a wonderful and fulfilling way. The “old” friends are still there … but they are not actively present in my life.

17. Who is your main caregiver? Do you understand what it takes to be a caregiver?03 GAIL WAITKUN 2 copy

I am my main caregiver. I do understand what caregiving requires. I have written two books to help others so that they don’t need to take six years to experience improvements.

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

My plans are to continue writing, to develop tools that will assist the brain injured, and to speak publically to those directly involved with diagnosing brain injuries and to those who care for the brain injured and/or are in contact with them. I plan on reaching them through my writings, speaking engagements, and coaching. I intend on having facilities with an established universal protocol for helping those in need. They will be specifically for the recovery of brain injured athletes.

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.

Yes! Get a qEEG read with the LORETA method. (Electroencephalography <EEG> is the measurement of electrical patterns at the surface of the scalp which reflect cortical activity, and are commonly referred to as “brainwaves.” Quantitative EEG <qEEG> is the analysis of the digitized EEG, and in lay terms this sometimes is also called “Brain Mapping.” The LORETA method <LOw-Resolution Electromagnetic Tomography Analysis> is a relatively new method for localizing the electric activity in the brain based on scalp potentials from multiple channel EEG recordings.) Do neurofeedback as designed by the results of that test administered by a qualified individual. Get a complete body scan (MRI) after an accident to insure the compromised areas that you may not be aware of because of your brain’s inability to serve you. Hire a coach who specializes in brain injury … especially someone who has gone through the process firsthand … as he or she will really know what is happening and what needs to be done in order to help.

20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?13 GAIL WAITKUN Heal Their TBI 182937333_10223542933629085_7895588353411287889_n copy

I would like those of you who are challenged by a brain injury to know that the body is geared to total wellness … and, when provided the opportunity, can recover completely. Mindset is key, as is a team of people who can support you in your recovery. Isolation is deadly and will not help. It is best to allow yourself to be open to those who are willing to help and to know that, although those individuals may not totally understand all the time, their willingness to help and, most especially, their love can be the most powerful of all therapies and medicines.

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COVID-19: Vaccines (Part 3 of 3): You’re Safe if You’re Vaccinated

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 and the disease it causes as COVID-19.  Because the majority of people, including much of the press, commonly refer to the virus as “COVID-19,” to avoid confusion, I use COVID-19 as the name of the virus.)

David Figurski

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

     Some things people need to know about vaccination and life after vaccination.

     If you’re healthy, you don’t need a booster, but it won’t hurt to get it. Donna and I will get the booster because we’re in the senior demographic, and our immune systems may have declined somewhat.

     Vaccinated people can get infected, but their disease will be mild or asymptomatic. There is no such thing as a “breakthrough infection.” All vaccines allow infection, but prevent severe disease.

Because vaccination doesn’t prevent infection, we definitely don’t want to infect any of the as-yet-unvaccinated children. We always wear our masks around children and try to keep a distance between them and us.

vaccine Stop Coronavirus, covid – 19 , China, Wuhan, Danger, vector Illustration.

For the reasons I discuss below, virologists in my former department at Columbia say the vaccines will protect you from all the variants we know about – despite all the hysteria.

Columbia virologist Vincent Racaniello continues to emphasize that there are no data to support increased transmissibility of any variant. Delta might be widespread for any one of a number of possible reasons.

All the US vaccines are safe. Because of them, my fears of hospitalization and death are gone.

But we still may be susceptible to getting Long COVID (see below). (There aren’t enough data yet on whether vaccinated people can still get Long COVID.) The reason this is an issue is because Long COVID can apparently be brought on by a mild infection.

4i9pkz4ATEven though we’ve been vaccinated, we are still being careful. We try to mix with vaccinated people only. We try to avoid people and places that might be hot spots for infection. We only eat on restaurant patios; we never eat inside. We still practice social-distancing when we can, and we still wash our hands thoroughly and use disinfectant if we can’t wash our hands.

But we have also relaxed several things. Donna now goes into stores, but she always wears her mask. We’ve traveled by car, so we have stayed in motels. Although we don’t eat inside, we have walked through several restaurants with our masks on. Also, we’ve eliminated some precautions with our mail and our food packages.

You can stop here.

If you want more detail, the following is an easily understood explanation of what the vaccines do and why they’re so protective.

All the currently approved US vaccines are directed to one viral protein: the Spike protein. Spike proteins decorate the virus coat. They are responsible for allowing the virus to bind to a protein (ACE2) on the surface of lung cells. Because the viral-encoded Spike protein and the host-encoded ACE2 protein bind to each other, the virus can bind to the lung cell and get inside to start an infection. This means the lung cell will be hijacked and reprogrammed to make more virus particles. Each infected cell will release thousands of new virus particles. They can then attach to more lung cells. And the cycle repeats. You can easily see how a virus can quickly overwhelm its host animal.

(Incidentally, the Spike protein probably got its name because pictures (electron micrographs) of the virus show that it resembles a “mace,” a weapon used in medieval times. The head of the mace had spikes which did the damage. Similarly, the coronavirus particle is coated with “spikes.” They are made from trimers (assemblies of three copies of a single kind of protein) of the Spike protein. Coronavirus definitely got its name from pictures. Several Spike protein trimers on the surface of each virus particle make the virus look like a cartoon-drawing of the sun. The spikes on the virus look like the “corona” of the sun.)

Antibodies work by binding to the Spike protein and preventing the Spike protein from binding the lung cell’s ACE2 protein. As a result, the virus can’t bind a lung cell to start an infection.

All proteins are made up of a series of amino acids linked end to end. The Spike protein has 1273 amino acids. The sequence and types of amino acids (of which there are 20) determine the property and the folding of the Spike protein. The proteins are molecular machines. There are tens of thousands of different proteins in the human body – each one doing a unique job. The virus-encoded Spike protein is the viral machine that makes it possible for the SARS-2 coronavirus to infect lung cells.

Of the 1273-amino acids in Spike protein, only a few amino acids form the binding domain that allows binding of Spike protein to ACE2. Antibodies that bind to this binding domain of Spike protein inactivate the Spike protein and prevent the virus from infecting lung cells. Such antibodies are called “neutralizing antibodies.” The purpose of the vaccines is to stimulate the production of antibodies to the entire Spike protein, some of which will be neutralizing antibodies that can block infection. In other words, the neutralizing antibodies are a subset of all the antibodies produced that bind to the Spike protein. Because the Spike protein has lots of amino acids and lots of domains, it will stimulate lots of different antibodies that will bind the Spike protein, but only those that bind to the Spike domain that binds ACE2 are neutralizing antibodies. Only they will prevent the ability of the virus particles to bind to lung cells and get in.

The sequence of the 1273 amino acids in the Spike protein can also be seen as several smaller sequences of amino acids. Some small sequences of amino acids can fold properly and stimulate the formation of specific antibodies directed against that small domain. So most of the Spike-protein-specific antibodies bind the Spike protein at other places and do not block the ability of the virus to bind to and infect lung cells. The most relevant domain is the sequence of amino acids needed to form and fold properly so that Spike protein (and therefore the virus) can bind the lung cell’s ACE2 protein. Antibodies to that domain prevent binding of the virus to lung cells. These are the antibodies of interest – the so-called “neutralizing” antibodies. In fact, scientists are thinking of using only the amino acids that allow the proper structure of the ACE2-binding domain to form. If a vaccine can be made from the ACE2-binding domain only of the Spike protein, then maybe more neutralizing antibodies would be made, and the vaccine might even be better at preventing disease.

Some variants are known to bind the neutralizing antibodies less well. The virus has “seen” many vaccinated people, so there is “pressure” for the virus to change to ensure its survival. Some altered viruses randomly arise with slight changes, like differences in the amino acid used at a certain position of the Spike protein. (There is a reason why Nature allows DNA and RNA replication to make some random, but very rare, errors.) Some changed (=mutant=variant) viruses are still able to form a domain of Spike protein that can bind ACE2 yet evade some of the neutralizing antibodies that block the original Spike protein. Such changed viruses may do better and eventually become predominant. So random errors in replication can lead to viruses that have some ability to resist neutralizing antibodies, yet still bind to lung cells to start infection. These are what we are calling “variants.” Because the change increased the virus’ chance of escaping neutralizing antibodies, it survives better.  The arising of variants is evolution that we can see happening in real time.

But we got lucky! Some of the variants (like Delta) may escape some neutralizing antibodies. But we are still protected! The Spike protein also stimulates killer T cells, an important arm of the immune system that is usually ignored.

The killer T cell arm of the immune system is as potent as the more commonly known antibody arm. Not every protein has sequences that can instruct killer T cells, but Spike protein does. When a cell makes proteins, a small fraction of each protein being synthesized is chopped up, and small fragments of that protein are displayed on the surface of the cell. The immune system has a way to instruct a killer T cell to kill any cell making a foreign protein (that is, one not made by the human body). A killer T cell that has “learned” to recognize a fragment of Spike protein on a cell’s surface will kill the cell making it because that cell is considered to be making virus.

And that’s not all! The antibody arm of the immune system is less potent in the variants, but the killer T cell arm is completely unaffected. Not only that, but, whereas a variant resistant to the antibodies can affect an entire population, because of mechanism, it is impossible for a variant resistant to killer T cells to spread beyond a couple of individuals in the worst-case scenario.

Bottom line: All the Spike-protein-based vaccines we know about (Pfizer-BioNTech, Moderna, J&J, and the UK’s Oxford-Astra Zeneca) are protective beyond expectations. You’re safe if you’re vaccinated.

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Survivors SPEAK OUT!

presented by

Laura Miller – Brain Injury Survivor

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

Laura

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

London, Ontario, Canada     brainsageyoga@gmail.com 

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

My first motor vehicle accident that caused a TBI (traumatic brain injury) with memory loss was June 5, 2002. I was 28. 

4. How did your brain injury occur?

I was rear-ended while I was stopped at a red light. I woke up to people around me and looking at me. They didn’t help whatsoever. My vehicle was seized, and I was very unsure of everything. At first, I didn’t even know I had had an accident. I didn’t know anything about my personals, like phone numbers, etc. All I saw when I tried to think was blackness. I was so cognitively impaired that finding the right words was very difficult. I didn’t know what my past was. I had no awareness or memories of events in my life, my child, or my child’s father.

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

At work, the customers noticed. It was thought that time off would help. But I went to the doctors a few weeks later. I thought I was concussed. It wasn’t my first concussion, so I thought it would get better. But I wasn’t getting better. The concussion was responsible for humiliating incontinence at night. I incorrectly thought I could handle the headaches, the noise, not understanding the concept of time, and the daily forgetting to do my pre-TBI mom and wife duties. I had a high-volume job with a multi-million-dollar company, but I had no memory of how to conduct my managerial duties. Unfortunately, in the grief of my confusion, I resigned. To this day, I consider that to be one of the worst mistakes of my life. All because of my accident and the brain injury.

The doctor then set up MRIs (magnetic resonance images), CAT (computerized tomography) scans, and a few other appointments, and I found a lawyer as well. The lawyer set up neuropsychology testing. In the year following my accident, a diagnosis was made. I had a moderate traumatic brain injury (whiplash 3) with amnesia. I couldn’t remember how long the doctor had said it might take me to “heal” to my pre-TBI state. The neuropsychologist highly doubted I would ever return to my pre-TBI level of function. He said that, in his expert opinion, my brain injury was catastrophic and permanent. 

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

I had no emergency treatment. I should have had first responders immediately, but I didn’t for some reason. But a legal case was set up soon after the accident. The lawyer had me take tests, and several people were involved: a nurse case manager, a rehabilitation therapist, and a physiotherapist. Therapy was scheduled for my neck and shoulder and for speech. (My stutter was pretty bad, and, when my breathing got in the way of thinking, the stutter would get worse. I would start crying when my breath stopped from the panic of having no thoughts. My neck injury meant that my tongue couldn’t lift properly to pronounce certain words.) My personal research indicated that I may have a neurological hairline fracture, which can affect several parts of the brain. If so, it could explain my symptoms. Also, I had already had a pre-existing severe frontal lobe concussion when I was a child. I and others thought that this may have been responsible for my learning difficulties – not the learning disability I was diagnosed with. But my new injuries in 2002 stopped my learning dramatically. My TBI made a mess of my life. Like many other survivors, I had to do combat with my insurance company.

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 occupational therapy, a rehabilitation therapist, speech therapy, counselling, physio, massage, chiro, and gym. I had a team of about ten individuals. I feel to this day my therapy was very well organized. 

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

I had many difficulties with balance and my gait at first. I had throbbing headaches. 

Smells would make me vomit. My heart felt like it was going to jump out of my chest. I had no sense of direction, and I was completely unorganized. I couldn’t lift my right leg fully to get into the tub or to walk, so I had assistants for the first few years. I slept in a chair for almost three years because I couldn’t sit up or roll out of bed.

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

From 2002 to 2005, I had an additional three accidents, with a pregnancy loss in one of them. My marriage broke up. (I was married for ten years, but I had no memories of this marriage.) I was diagnosed as having clinical depression, and I was extremely suicidal. The medications helped neither. So, needless to say, my life got worse.

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

I don’t know. I have no clear memories.

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

I started having a better view of life with in-depth yoga. I also used my free time from being unable to work to see if maybe in the future I could become a teacher and be an inspiration to others in the brain injury and mental health communities. Yoga has the ability to calm the autonomic nervous-response system; calm the vagus nerve, which transmits information from the surface of the brain to tissues and organs elsewhere in the body; and chill out PTSD (post-traumatic stress disorder) and anxiety. (My anxiety was always heightened, but with my rehabilitation therapy of thought process, yoga, and meditation, my anxiety is now probably 50% controllable most days.)

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

I dislike the grief. The grief of all my losses is still pretty hard for me.

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

Not really, but I am doing work to try and accept my brain injury. My child is super-supportive and has been guiding me to be independent and to try a new way of life. I do yoga. I am going to neurology school. I now see that I am worthy of something in life. I work on acceptance multiple times a day.

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

Yes! My daughter and I still have struggles. She was under 10 when I was injured, and she had no true support other than her dad. I am thankful he was a good dad for her. Looking at her with no memory is a heartbreaking lens to deal with. As for romance, I haven’t had a real relationship since my divorce. I haven’t been in the right frame of mind. One day I hope the universe will align with my life and help me find true love.

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

I don’t do much socially, mostly because of my PTSD and my financial situation. I’m integrating my yoga life into volunteer work.

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

My daughter helps me and assists me with the big decisions. I also have about five other family members who keep regular contact. Even though it’s difficult, they will help if needed. But it’s important for me to be in charge of my own care and to live independently. This helps with my depression.

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

I’m trying to see how this yoga business will work out for me. I want to do workshops and classes. Maybe I could work alongside a rehabilitation therapist for TBI patients. I am writing an autobiography. I’d like to better my financial situation so my child will be set just in case. And I hope to be in a loving forever relationship as well.

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.

Talk! No matter the dark thoughts, talk! I wouldn’t be here now if I hadn’t been honest about my thoughts of suicide. Keep negative friends away. Participate, even when your mood doesn’t want to! Know that one day, things will click, and your life will begin to change for the better. Your responsibilities for daily living may seem overwhelming at times, but never stop planning. It can be a time saver. (I plan all my meals in advance and make them on the weekend. I save at least eight hours a week by having my meals already made.)

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

Do yoga and meditate! Seriously, they’re life-changing.

Be educated on what depression medication does with TBI. (I plan to give a workshop on this topic.)

Stop repetitive thinking. (You can do this by smelling essential oils, having positive thoughts, or by doing deliberate simple actions, like moving a limb or picking up a picture.)

Learn how to breathe. (Proper breathing is so important to brain injury problems, like PTSD and anxiety.) I have a saying: “Once we own our breath, no one can steal our peace.”

Get Your Copy Now

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PAPERBACK!   Read it Now!     e-BOOK!   Read it 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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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.

Donna O’Donnell Figurski

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