TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘Traumatic Brain Injury Survivor’

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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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: 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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Survivors SPEAK OUT! Marcia Pelletiere

Survivors SPEAK OUT! Marcia Pelletiere

 presented by

Donna O’Donnell Figurski

4 Marcia Pelletiere

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

Marcia Pelletiere

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

New Jersey, USA

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

June 2006

At what age?

52 years old

4. How did your brain injury occur?

I was stopped at a red light in the rain, when I was rear-ended by a Mack truck, since its brakes didn’t work well in the rain.4cf071c5aa7eb3f1cf526f24c8d8cdcf

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

Right away

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

I went to the Emergency Room. They gave me pain meds and released me – without an MRI (magnetic resonance imaging) or any other scans or tests.

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?

Yes. I had physical, visual, and cognitive therapies. (Outpatient only)

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

A balance problem, body pain, vertigo, visual perception issues, short-term memory loss, and many other things.R29bb7d92f62ec64ba9bd5ff941bbb04d

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

After 15 years, my life is largely repaired. I learned a lot of valuable lessons. I credit some of the people who helped me with making my new life possible.

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

I miss being able to trust my brain to be reliable with dates and my eyes, with visual perception … things like that.

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

I appreciate what I have so much now. Everything is more precious.

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

I dislike the way it caused me to spend so many years feeling disoriented and isolated. I was frustrated from not being able to communicate my inner “mess” and distress, from my visual and audio processing problems, and many other issues. Nowadays I live with only a few “leftovers” from the brain injury, and I’ve learned to manage those.

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

My cognitive therapist was essential in my recovery. Also, my meeting other TBI (traumatic brain injury) patients was a huge help in accepting the reality of TBI.

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

Having a TBI is a strain on all relationships. Everything was much more difficult, and that made relaxed relating harder, to say the least!

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

Now I prioritize my relationships and appreciate the support that family and friends and brain-injury caregivers gave me when I needed it most.

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

I have been a caregiver, and I have had caregivers, so I understand a lot about caregiving – and about caregiver burnout! I am my own caregiver now, thank goodness! (I function very well these days. I feel very lucky.)

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

Marcia Pelletiere

Marcia Pelletiere’s books and recordings

I am doing what I want to do right now. I’m doing creative work; I’m also teaching; and I’m spending time with friends and family. In ten years, I hope to have enough health to still be doing creative work, to still be spending time with loved ones, and to be traveling.

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.3 Marcia Pelletiere Survivor 2 Author 062021

Listen to your body. Make sure to keep trying to communicate what is happening, if you can. Find doctors and other caregivers who know about brain injury and who will listen to you and take your symptoms seriously. Check out problems (vision, balance, nausea, etc.) with neuro-optometrists and ENTs (ear, nose, and throat specialists).

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

Every brain injury is different. You are the expert on what your brain injury feels like. Don’t devalue your own experience! Your input with doctors and others is important.

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Caregivers SPEAK OUT: . . . Author, Abby Maslin

Caregivers SPEAK OUT: Author, Abby Maslin

presented by

Donna O’Donnell Figurski – author

Prisoners without Bars: A Caregiver’s Tale

 

Caregiver, Abby Maslin – author of “Love You Hard”

 

 

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

Abby Maslin

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

Washington, DC, 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?

My husband, TC, is the TBI (traumatic brain injury) survivor. He was 29 at the time of the assault that caused his injury.

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

I became my husband’s full-time caregiver on August 18, 2012. I had just celebrated my 30th birthday.

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

I had a 21-month-old son, named Jack, whom I was also caring for at the time.

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

I was employed as a fourth-grade teacher. TC’s injury occurred the weekend before school started. I was not able to return to work for a year.

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

We had family members who lived nearby and who offered intermittent help. My parents were both ill, however, and unable to help in any large capacity.

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

Immediately. It began as I was tasked with advocating for TC’s medical care.

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

Yes. TC was in a deep coma for about four days, but he took more than two weeks to fully come out of it.

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?

Yes. TC received all the therapies: speech, occupational, and physical. He received occupational and physical therapies for about one year. He received speech for more than two years.

Love You Hard by Abby Maslin

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

TC had severe aphasia (struggles with both expressive and receptive language). He had physical weakness on one side of his body and needed to relearn how to walk. He continues to have limited use of his right hand.

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

It’s really impossible to compare. My life since becoming a caregiver is far more complex and difficult. It’s required a lot of emotional growth and healing to let go of the life I had and the relationship I once shared with my spouse. This new life, however, is far richer in purpose and gratitude than it was before. I have a clearer sense of who I am, what I’m capable of, and how I want to spend my time on earth.

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

I miss the sense of safety I once felt. I miss the easy conversation my husband and I once shared. (His aphasia makes communication much more effortful.)

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

I enjoy the sense of gratitude I live with daily. I can identify and reflect on my blessings with clarity. It’s a wonderful thing to appreciate life as it’s happening.

15. What do you like least about brain injury?

The unpredictability. As a caregiver, I find that it’s difficult to align one’s expectations to the recovery of a loved one, as everything is always in flux and changing.

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

What’s helped me is the recognition that suffering is universal. My family and I were never exempt from life’s challenges and normalizing that experience of hardship has helped me make peace with its existence.

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

Absolutely. While my husband’s personality is mostly unchanged, there are subtle changes that have required us to relearn each other as people. It has shifted the dynamics of responsibility and roles in the household.

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

Yes, at first. But, we were fortunate to have many friends who stuck out the recovery process with us and with whom we still socialize. We are not as social as before, but we also have two young children these days.

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

Praying for continued good health. TC has wonderful healthy habits, but we can’t control the aging process. If all goes well, in ten years, we’ll still be working and living at home with a 14-year-old daughter and a 20-year-old son at college!

Caregiver, Abby Maslin – author of “Love You Hard”

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

Be forgiving of yourself and your own process of grief. It cannot be rushed. The hand you’ve been dealt is a terribly unfair one, and it is OK to acknowledge the gravity of that fact. Life with brain injury requires persistence, patience, and a lot of hope, but life can be as beautiful and as rich as before.

 

Stay Safe and Healthy!

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COVID-19: Love in the Time of a Pandemic

COVID-19: Love in the Time of a Pandemic

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 in these posts.)

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

Donna and I recently celebrated 51 years of marriage.  We chose the beautiful desert scenery around the White Tank Mountains near our home in Arizona.  We returned to the place that Donna proposed to me last year as part of our 50th anniversary celebration.

This year, our anniversary celebration was very different.  We are in the middle of a global pandemic of a new coronavirus.  To slow the spread of this highly contagious virus, most people wear masks, practice social-distancing, and self-quarantine.  (For us, except for monthly food pick-up runs, we have been home over 160 days.)

Desert near the White Tank Mountains

The effect of the pandemic has been horrific and devastating for society, most notably for health-care personnel, blue-collar workers, teachers and school administrators, and middle- and lower-class families, who are struggling with paying bills, having enough food, and eviction.

Donna & David Figurski Wedding Anniversary #51

Globally, there have been over 22.5 million confirmed cases of COVID-19, and over 795,000 people have died. The U.S. has over 5.5 million cases and over 175,000 deaths. Scientists and physicians around the world are racing to understand the virus and its disease.  A viable vaccine is months away.

David & Donna Figurski – so happy together

Everyone is trying to cope as best as he or she can. On a personal level, Donna and I are fortunate to deeply love one another and to have each other in the midst of such chaos.

Love is worth celebrating wherever and whenever you can.

Stay Safe and Healthy!

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Survivors SPEAK OUT! . . . . Nolan McDonnell — Survivor of Brain Injury

Survivors SPEAK OUT! Nolan McDonnell

presented by

Donna O’Donnell Figurski

Survivor of Brain Injury – Nolan McDonnell

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

Nolan McDonnell

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

San Jose, California, USA     Nolan@CoachNolan.com

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

My traumatic brain injury occurred on April 23, 2017, at the age of 31.

4. How did your brain injury occur?

I was the victim of a robbery. I was held at gunpoint and then shot in the head. My brain injury is bilateral, as the bullet went through both sides of my brain.

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

I was found in my car, which was riddled with bullet holes. I had an entrance wound in my skull from the bullet.

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

I had seven blood transfusions, a craniotomy, and maybe some other things.

7. Were you in a coma? If so, how long?physical-activity-clipart-10

Yes – fifteen days.

8. Did you do rehab? What kind of rehab (i.e., inpatient or outpatient and occupational and/or physical and/or speech and/or other)? How long were you in rehab?

I have or had speech, occupational, physical, stretch, recreational, massage, and craniosacral therapies and acupuncture. It has been two and a half years now, and I put in eight hours a day, five days a week.

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

I was a paraplegic – I could not move from the neck down. I worked hard to overcome this, however. I still suffer from extreme spasticity, muscle imbalance, and minimal range of motion on the left side of my body, as well as in my legs.

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

My life is better after my traumatic brain injury. Before the injury, I did not know how short, valuable, and fragile life is.

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

I miss skateboarding, making new friends at school, the freedom to get up and do anything I wanted at any given time, athletics, not having a caregiver, living alone, and having guests come over.

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

I like my perspective on and my valuing of both life and people. Life is so valuable to me now – more meaningful and beautiful.

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

I love everything about my brain injury. Life is more important to me now.

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

No

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

Yes. We had to make everything wheelchair-accessible, and someone always needs to be with me. Also, with my injury, I can’t get up and go make myself a sandwich or go to the store and get something that I want. Somebody needs to do those things for me. I am a lot more limited in that aspect, but it’s not a big deal if I plan ahead.

The biggest aspect about this question is addressing the invisible injury. People look at me and see that I’m strong, and they expect that, at any moment, I can just get up and start walking, hiking, or going on dates.

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

Not really for me. I have always been a very social person, and my wheelchair is a great conversation starter! People come up all the time and ask me what happened. I am always making new friends.

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

My mother

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

(not answered)

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 is a tough question because no two injuries are the same, but I will share my input and what worked for me to get my legs strong again.

Learning how to use my legs has been especially difficult. My parents bought an assist-bar at Home Depot and mounted it to the wall, a little below chest height. I can use my wheelchair to wheel up to the bar and practice standing up, do squats, stand up, and let go and learn how to balance.

Another great thing that I would love to share is to go to your local community college and check out adaptive PE (physical education) classes. The community colleges by my house have adaptive PE – they have standing frames and parallel bars, and all of the equipment and workout-machines are wheelchair-accessible. Adaptive PE programs usually have water classes as well.

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

Nolan McDonnell – Survivor of Brain Injury

I would suggest that other brain injury survivors take initiative and demonstrate that they want to help themselves because that will encourage support from other people. Also, always continue doing exercises and stretching. Try to increase your range of motion, and workout constantly. Fitness creates a mind-body connection and promotes new neurological pathways. Additionally, if you take care of yourself physically, you tend to eat better – and proper nutrition is very important for a healthy brain.

 

Stay Safe and Healthy!

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COVID-19 – It’s Everywhere . . . Interview with Dr. Anthony Fauci

Dr. Anthony Fauci – an interview by Drs. Vincent Racaniello and Rich Condit, virologists

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 in these posts.)

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

If you believe in science and facts, this 36-minute podcast will be a treat and essential listening. It was recorded on July 16, 2020, and posted on July 17. (Note: The link is for the page that has all the TWiV podcasts. Make sure you are listening to #641.)

Dr. Vincent Racaniello, a virologist, was my colleague in the Department of Microbiology & Immunology at Columbia University. He does a podcast on viruses called TWiV (This Week in Virology).

Dr. Vincent Racaniello – Columbia University virologist

Vincent, Rich Condit (a retired virologist from the University of Florida), and Dr. Fauci (Director of the National Institute of Allergy and Infectious Diseases) discuss COVID-19 and the pandemic. Among the topics discussed are the paths of infection, symptoms, testing, re-opening schools, fatality rate, immunity, and vaccines.

 

 

Normally, the TWiV scientists make their discussion understandable to non-scientists. But, these three scientists were working against a time-constraint, and they sometimes used terms that some of you may not be familiar with. To help you, I’ve made a glossary. The order of the terms in the list is based on the time in the podcast when the term is first used (noted in parentheses).

Dr. Anthony Fauci 071920

Director of the National Institute of Allergy and Infectious Diseases (NIAID)

Dr. Fauci was also interviewed for 64 minutes in 2013 by Vincent and Rich (TWiV #219).

 

Glossary provided by Dr. Figurski for easier listening.

glossary

PCR-able (2:52) – based on the PCR (polymerase chain reaction) test, which is a very sensitive test for the RNA chromosome (or a chromosomal RNA fragment) of the virus

fomite (3:11) – an infectious object or material

viral load (4:05) – the number of viruses

cycle threshold (4:27) – the PCR test is based on a number of amplification cycles to see a signal; the number of amplification cycles needed is related to the number viruses present; the higher the number of cycles needed, the lower the number of viruses present

nucleotides (5:05) – the building blocks for the viral RNA; the RNA chromosome of COVID-19 is made up of about 30,000 nucleotides

BSL-3 lab (5:12) – a bio-safety level 3 lab has containment and safety precautions that allow scientists to work with microbes thought to be dangerous

antigen (11:47) – a substance that stimulates the production of antibodies to itself; infection with COVID-19 leads to the body’s production of anti-COVID-19 antibodies; in the COVID-19 test discussed here, viral antigens (probably viral proteins) are used to bind to anti-COVID-19 antibodies to detect them; the presence of anti-COVID-19 antibodies is an indication that a person is now infected with COVID-19 or was infected in the past

systemic infection (13:21) – infection of other organs – not just infection of the lungs

systemic sequelae (13:23) – symptoms of infection in other organs

viremia (13:32) – the presence of virus in the blood; because the blood goes to all organs, a viremia allows the virus to reach other organs and can lead to a systemic infection

endothelium (14:22) – the layer of cells that lines organs and vessels

SARS (15:18) – the first SARS (Severe Acute Respiratory Syndrome) pandemic of 2003 – also caused by a coronavirus

MERS (15:21) – Middle East Respiratory Syndrome – another earlier and limited pandemic caused by a coronavirus

sero-prevalence (16:04) – the fraction of people in a population who are positive for antibodies to COVID-19; antibody positivity is an indication that a person is now infected with COVID-19 or was infected in the past

herd immunity (16:28) – immunity of the population by infection or by a vaccine; when people are infected (and recover if they have symptoms), they become immune; if enough people are immune, “herd immunity” has been achieved without a vaccine; the virus has few people to infect productively, and its spread slows to almost nothing; estimates are that 70-80% of the population must become immune to protect the population

Moderna vaccine (20:55) – the company Moderna teamed up with Dr. Fauci’s group and seems to be having some good success so far in phase I and phase II clinical trials (of three phases, see below); instead of the standard method of using a viral protein or several viral proteins to stimulate the production of neutralizing antibodies (see below), the Moderna vaccine uses a brand new technology based on the mRNA (see below) for the viral protein, a method that has never before been used to produce a vaccine

clinical trials – clinical development of a vaccine is a three-phase process. During Phase I, small groups of people receive the trial vaccine. In Phase II, the clinical study is expanded and the vaccine is given to people who have characteristics (such as age and physical health) similar to those for whom the new vaccine is intended. In Phase III, the vaccine is given to thousands of people and tested for efficacy and safety. (From the CDC)

mRNA (20:57) – messenger RNA; in cells, the genetic code for the production of proteins resides in the chromosomes, which are made of the nucleic acid DNA; that code is read and translated into the proteins (the machines of the cell) by the cell’s protein factories – the ribosomes; because the ribosomes need to get the code from the DNA, the messenger RNA (mRNA) comes into play; (RNA is a nucleic acid very closely related to DNA); a protein-machine copies the DNA’s code into mRNA, which then brings the code to the protein factory, where it is read and the protein is made

neutralizing antibody (21:09) – an antibody that blocks infection by the virus; for COVID-19, an antibody that inactivates the spike protein of the virus (see below) is a neutralizing antibody

convalescent serum (21:17) – serum from the blood of patients who have recovered from COVID-19; the serum contains the antibodies

spike protein (21:51) – a protein of COVID-19; important because it’s needed for the virus to bind tightly to the ACE2 (22:19) (angiotensin converting enzyme 2) protein that’s on the surface of lung cells; the binding is needed for the virus to gain entry to the cell and start the infection; a target for some vaccines; antibodies that inactivate the spike protein are called “neutralizing antibodies”

hemagglutinin, neuraminidase (22:39) – surface proteins of influenza virus needed for infection and for the release of progeny virus, respectively; antibodies to these proteins (usually to hemagglutinin) are the basis of the vaccine for influenza virus

monoclonal antibody (27:29) – the body’s collection of antibodies is produced by a population of B cells; each B cell produces one specific antibody; if a B cell can be cloned and cultured away from the population of B cells, then that culture will produce only that one specific antibody (for example, an anti-spike protein antibody), also called a “monoclonal antibody”

pathogen (28:17) – infectious agent (virus, bacterium, or parasite) that causes disease

NIAID (31:40) – National Institute of Allergy and Infectious Diseases; a part of the National Institutes of Health (NIH); the NIAID is headed by Dr. Fauci

 

Stay Safe and Healthy!

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Sneak Peeks for Prisoners – Audio Book Coming Soon

Coming SOON!

Prisoners without Bars: A Caregiver’s Tale – released soon as an audio book.

Prisoners without Bars: A Caregiver’s Tale, a memoir by Donna O’Donnell Figurski, is a heart-wrenching love story that will make readers laugh, cry, and G-A-S-P!

When my husband and best friend, David, had a traumatic brain injury in January 2005, it sent us down the rabbit hole. David’s neurosurgeon gave David a 1/600% chance of survival. David had two more brain surgeries after his first and again, he defied all odds. He lived!

Listen to the excerpt to see how it all started.
You can easily find my book on any of the following places.

Amazon

Barnes and Noble

IndieBound

Goodreads

Just click the links.  You can actually review it and rate it on Goodreads. Did you know that reviews and ratings are the life blood of books? Reviews and ratings help to keep books alive and they may even get to the bestseller list. So, PLEASE write a review and rate Prisoners. It can be short.

Learn more about me at donnafigurski.com

Please leave a comment/question. I will respond.

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COVID-19 – It’s Everywhere . . . Immune Response, Vaccine Development, & Asymptomatic Infections

New Info for COVID-19: Immune Response, Vaccine Development, & Asymptomatic 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 and the disease it causes as COVID-19. Because the majority of people, including much of the press, commonly refers to the virus as “COVID-19,” to avoid confusion I use COVID-19 as the name of the virus in these posts.)

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

I have taken a 119-minute podcast on COVID-19 by a virologist and reduced it to the 21 minutes you probably want to hear the most. This long post looks scary, but it’s actually very easy to read and makes the 21 minutes readily understandable.

Dr. Vincent Racaniello, a virologist at Columbia University, was my colleague in the Department of Microbiology & Immunology. He does a podcast on viruses, called TWiV (This Week in Virology). Since March 13th, when we started staying home and taking precautions to minimize the pandemic, Vincent has released over 40 podcasts, nearly all of which are about COVID-19.

TWiV is unique because the host, Vincent, does research on and lectures about viruses. In addition to his being a scientist, his podcasts always have a panel of PhDs, sometimes as many as five people (two more virologists, an immunologist, a parasitologist, and a former student – now a science reporter). The discussions are great and done with a non-scientist-audience in mind. TWiV is known worldwide and attracts tens of thousands of listeners every month. However, the TWiV podcasts are long (~1-2.5 hours), so I listen and tell you the minutes to listen to hear information that I think you’ll want to know.

This post is about TWiV #631, which was posted on June 25, 2020. (Note: The TWiV link is for all the podcasts. Be sure you listen to #631.)

TWiV podcast #631 is 119 minutes long, but I have selected ~21 minutes you may want to hear. The topics you’ll hear discussed are the following: the value of the safety precautions, the need for free and extensive testing, the unknowns of the immune response, the timetable for vaccine development (at least eight more months), and the role of age in symptomatic and asymptomatic infections.

I have broken down #631 into segments defined by the minutes I chose for you to listen to. (The last half of the podcast was spent answering questions from listeners. While much good information is in this section, I emphasized the parts you probably want to hear the most.)

Podcast #631 features a discussion by three scientists: Vincent (virologist, professor, Columbia U.), Rich Condit (virologist, Professor Emeritus, U. of Florida), and Brianne Barker (immunologist, professor, Drew U.). The scientists usually make sure their discussion is understandable to their generally non-scientist listeners, but I found that they occasionally used terms that may be unfamiliar to you. Therefore, I have provided a glossary in the segment in which the term is first used.

TWiV #631
Segment 1
Minutes 3:10-9:10
The cavalier attitude of some people to safety precautions; the spike of new cases in the US; the toxic mixture of politics and science; the 172 vaccine projects planned or in progress; how vaccine development – done properly – will take over eight more months

glossary
rotavirus – common RNA virus responsible for diarrhea in young children and infants. Worldwide, the virus is responsible for as many as 400,000 deaths annually. A vaccine was introduced in 2006.
protein subunit-based – Some large proteins are actually complexes of individual proteins or “subunits.” Inactivation of an essential subunit (for example, by a vaccine) inactivates the whole protein complex.
Phase III clinical trial – Clinical development of a vaccine is a three-phase process. During Phase I, small groups of people receive the trial vaccine. In Phase II, the clinical study is expanded and the vaccine is given to people who have characteristics (such as age and physical health) similar to those for whom the new vaccine is intended. In Phase III, the vaccine is given to thousands of people and tested for efficacy and safety. (from the CDC)

Segments 2 and 3
Minutes 17:20-19:05 and 22:25-24:00
Possible importance of T cells in the immune response; the role of antibodies may not be as important as first thought; implications

glossary
antibody – part of the adaptive immune response (see “innate immunity” below), which eventually selects for proteins (antibodies) that specifically bind to foreign (usually) substances (like viral proteins). Binding of an antibody to a substance can cause inactivation of that substance.
serology – the analysis of blood for the presence of antibodies that bind specific substances (in this case, to proteins of COVID-19). A positive serology test for COVID-19 means that you are now infected or have been infected sometime in the past.
T and B cells – The white blood cells are important to the immune response. Several types of white blood cells have been identified. T cells and B cells are two major classes. B cells produce antibodies. Two subtypes of T cells are known to be important for the immune response to COVID-19. One subtype signals B cells to produce antibodies. Another subtype (cytotoxic T cells) kill virus-infected cells. The scientists discuss the evidence that the latter subtype of T cells may be very important to the immune response to COVID-19.
innate immunity – the first line of defense or the non-specific arm of the immune response. The innate immune response is in contrast to the adaptive (specific) immune response, which includes antibody production and takes days to develop.
PI – Principle Investigator; the head of the project
neutralizing antibody – an antibody that blocks infection by the virus; for COVID-19, an antibody that inactivates the spike protein of the virus (see below) is a neutralizing antibody
IgG – Immunoglobulin Gamma; the majority of the long-lived antibodies in the blood
immunopathology – that part of a disease that is caused by the immune response

Segment 4
Minutes 26:25-29:40
Which vaccine will be the best? What should we think of a vaccine based on spike protein only?

glossary
MHC – Major Histocompatibility Complex – several genes that code for a large set of proteins that are on the surface of every cell. T cells monitor what the MHC surface proteins are bound to. Fragments of proteins (see “peptide” below) are bound to MHC proteins and displayed to a T cell by cell-cell contact. If a cytotoxic T cell recognizes the fragment as normal or “self,” it takes no action. If the cytotoxic T cell “sees” a peptide as different or foreign (as in a virus-infected cell), it will kill the cell. This is part of the innate immunity arm. Stimulation of a T helper cell by an MHC protein bound to a foreign peptide will signal the adaptive arm of the immune response, which includes antibody production.
peptide – a small fragment of a protein
antigen – a substance that stimulates the production of antibodies to itself and molecules very similar to itself. COVID-19 vaccine production uses one or more viral antigens to trigger an immune response in the absence of infection by the virus.
spike protein – a protein of COVID-19; important because it’s needed for the virus to bind tightly to the ACE2 (angiotensin converting enzyme 2) protein that’s on the surface of lung cells; the binding is needed for the virus to gain entry to the cell and start the infection; a target for some vaccines; antibodies that inactivate spike are called “neutralizing antibodies.”
attenuated – An inactivated virus is a virus that’s been killed. An attenuated virus is a live virus that replicates and induces the immune response the natural way, but no longer causes disease. The Salk polio vaccine is based on killed virus. The Sabin vaccine is based on an attenuated polio virus. (Interesting note: Vincent Racaniello sequenced the chromosomes of the normal and Sabin polio viruses and identified three mutations in the Sabin virus.)
Zika virus – a mosquito-borne virus that was first identified in Uganda in 1947 in monkeys. It was later identified in humans. In most cases, there are no symptoms. Most frighteningly, in pregnant women, it may cause subsequent birth defects, including microcephaly (small head due to an undeveloped brain). In early 2015, a widespread epidemic, caused by the Zika virus in Brazil, spread to other parts of South and North America. There’s no vaccine or specific treatment. (from WHO and Wikipedia)

Segments 5, 6, and 7
Minutes 29:55-36:45, 40:45-41:30, and 43:00-43:30
A paper by scientists in Italy provides data from a large pool of people to show that it’s easy to become infected by contact with an infected person, even though the infected person may have no symptoms, and also to show that the greater a person’s age is, the higher is the likelihood of having COVID-19 symptoms. (Seventy-four percent of people under 60 were asymptomatic!)

glossary
PCR-positive – The test for infection is the rapid and convenient PCR (polymerase chain reaction) test. It detects the RNA chromosome of the virus. A PCR-positive result is taken as evidence that the person tested currently has an infection. (But, the test is so sensitive that it can sometimes detect fragments of viral RNA in a recovered patient.)
sero-positive – A positive result in a serology test of a blood sample indicates the presence of antibodies to proteins of COVID-19. The virus does not need to be present for a person to be sero-positive. Such a result indicates that the person is currently infected or was infected in the past.

 

Stay Safe and Healthy!

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

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