TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘Another Fork in the Road’

Read All About It! . . . . . . . Prisoners without Bars: A Caregiver’s Tale

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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HOW TO FIND A SUPPORT GROUP

How to Find a Support Group

presented by

Donna O’Donnell Figurski

Have you ever needed a support group? Needed the help of others to assist you with the problems that life throws at you? Have you been open to asking for and accepting the help offered? Or are you like me––struggling to stand alone––and thinking you can go it alone?

Be SMART! Check out the possibilities below.

Your healthcare provider may be able to offer assistance. doctor, nurse, social worker, chaplain or psychologist

Google It! Search the Internet. Online support groups are available on social media sites like Facebook.

Local centers like libraries, churches, or synagogues may be able to direct you to an appropriate support group.

Check your local listings. Search your local telephone book (Does anyone even have a phone book anymore?) or check your local newspaper for support resources.

Ask family, friends, or anyone who knows someone with a brain injury for support group suggestions. 

Contact Organizations.

Contact a state or national organization affiliated with brain injury.

 Contact the Brain Injury Association of America to find support groups in your state. http://www.biausa.org/

Check out the Mayo Clinic for resources.

http://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/support-groups/art-200655

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Caregivers SPEAK OUT! . . . Norma Myers ~ Author, Advocate, & Mom

Caregivers SPEAK OUT! Norma Myers ~ Author, Advocate, & Mom

presented by

Donna O’Donnell Figurski

Norma Myers Caregiver

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

Norma Myers

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

Salem, Virginia, USA

3. 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?

Steven was 22 years old. He was involved in a car crash with his brother Aaron. Aaron didn’t survive the accident. Aaron was 26 years old

4. On what date did you begin care for your brain-injury survivor?

August 13, 2012

Were you the main caregiver?

I resigned from my career with Advance Auto and went to Shepherd Center in Atlanta, Georgia, with Steven, but I had complete support from my husband, Carlan. He drove back and forth from Salem to Atlanta to provide support.

Are you now?

Steven lives independently.

How old were you when you began care?

47 years old

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, but we choose for me to resign so that I could be Steven’s primary caregiver. I returned to the workforce 2.5 years ago – big accomplishment!

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

I had my husband’s support. We also had offers of help from family and friends. We also received financial support from family and friends through fundraisers.

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

Steven was at Carilion Roanoke Memorial Hospital for a month before being transported to Shepherd Center in Atlanta, Georgia.

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

Steven was in a medically induced coma. He had a craniectomy (actually, the first of two). (A craniectomy is the surgical removal of a portion of the skull.) We sat by his bedside, and we also planned a life-celebration for his brother Aaron.

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?

Steven received every discipline of therapy available at the Shepherd Center and when he returned home to Virginia. We spent two months at the Shepherd Center for Rehab –

one month, inpatient; second month, outpatient. I spent time learning everything possible about Steven’s rehab needs for when we returned home.

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

Getting Steven to his appointments. Making sure we stayed on top of every available resource, including grants, gifts, and programs that would help Steven with his recovery.

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

That is a loaded question. It has changed in many ways, such as I feel like I was there for Steven when he needed me, which I am thankful I was able to do so. We have experienced “firsts” all over again, such as waiting for Steven to speak his first word, to take his first step, and to become independent all over again. It has made me a stronger person because not only have I experienced the death of my first-born son, but I have also experienced what it’s like to watch my other son learn how to do life all over again.

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

Witnessing my sons’ enjoying being brothers. I miss being a mother to both of my sons. I also think about what Aaron’s life would look like at every stage of his life if he had survived and what Steven’s life would look like without a traumatic brain injury (Ambiguous Loss).

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

Celebrating Steven’s victories in life. Helping other families navigate through their journey of TBI (traumatic brain injury).

15. What do you like least about brain injury?

There is no cure, and it’s an invisible disease. I also wish that when people are curious about what happened to Steven, they would ask instead of stare … Steven is fully comfortable in discussing his accident.

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

13 NORMA MYERS , Steven, Dad Graduation

Steven’s motto helps me put things into perspective … ”Deficits do not define him.” He is an overcomer.

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

We rearrange life to be available to Steven should he need us if he has a seizure. Currently, with no license due to seizures, we make sure he is where he needs to be all while balancing our careers. We make it work as a family!

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

Of course! As parents, we will always put our son’s needs first.

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

I have no idea! We can only take one day – actually one minute – at a time, always trying to better ourselves and be thankful that, while this journey isn’t what we planned for our lives, it’s what God gave us. And we will do the very best we can day by day to honor Him.

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

tenor

Every brain injury is different, so please don’t do the comparison game. Take one day at a time. Tap into every resource available to you, and, trust me, there are so many out there. You are not alone – there is no shame in asking for help! I will do anything for my fellow brain injury survivors and their families. I am here to offer a word of encouragement through my blogs and volunteer work. Don’t give up!

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Clip Art compliments of Bing.)

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Survivors SPEAK OUT! Jordan Fallert

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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Clip Art compliments of Bing.)

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Survivors SPEAK OUT! . . . . . . . Bill Gasiamis Stroke Survivor & Podcaster

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.

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Click Links under Book

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                                                  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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Survivors SPEAK OUT! Casey Chaffey – Living and Dealing with Chronic Pain

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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COVID-19 Omicron Variant is Not Less Severe

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

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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Indie Spotlight – Donna O’Donnell Figurski

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
Prisoners (eBook) Amazon US eBook
Prisoners (audiobook) Amazon Audiobook
Prisoners (print) Barnes and Noble Paperback
Prisoners (eBook) Barnes and Noble eBook
Prisoners (print) IndieBound
Prisoners (eBook) Kobo

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

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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