TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘Another Fork in the Road’

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! Laura Miller

Survivors SPEAK OUT!

presented by

Laura Miller – Brain Injury Survivor

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

Laura

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

London, Ontario, Canada     brainsageyoga@gmail.com 

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

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

4. How did your brain injury occur?

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

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

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

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

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

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

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

No

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

19. Are you able to provide a helpful hint that may have taken you a long time to learn, but which you wished you had known earlier? If so, please state what it is to potentially help other survivors with your specific kind of brain injury.

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

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

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

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

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

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

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Donna O’Donnell Figurski

Survivors SPEAK OUT! Danielle Skranak

Survivors SPEAK OUT! Danielle Skranak

 presented by

Donna O’Donnell Figurski

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

Danielle Skranak

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

Washington DC, USA

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

October 26, 2014     I was 19.

4. How did your brain injury occur?

I fell during Army Basic Training.

5. When did you (or someone) first realize you had a problem?ce3f3b31921bb023c9c1c8c8dcbb8f34

It was witnessed by my entire company.

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

I did not receive any emergency treatment.

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 attend rehab or have any other outpatient therapy.

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

I had long-term and short-term memory loss, vertigo, and aphasia.

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

It’s neither better nor worse, just different. It made me become more independent, I suppose.

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

Easily remembering things and my memories 

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

Speaking about my injury and meeting other survivors 

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

remember-note-wqq-hiI dislike how easily I forget stuff and having to constantly ensure I’m eating right – so my brain is working at its optimal capacity.

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

Time, really. Nothing else has contributed. 

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

I was more easily manipulated. I was involved in a domestically violent relationship that did not end well.

16. Has your social life been altered or changed and, if so, how?Danielle Skranak 2 Ms Gilbert 051621

I used to easily trust people because so many wanted to help me, but I’ve since learned that you cannot trust everybody. That was a hard lesson for me to learn. 

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

N/A

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

I hope to be fully recovered and to help those who need help. Perhaps in the next few years, I will have earned my Juris doctorate.

Ra3aca9d8126fdc212dc543ced6b1071219. 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 wish I would’ve known early on that not everyone’s recovery is the same. Some are longer; some, shorter. There’s no magic pill you can take to make recovery shorter. 

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

Take everything slowly. It’s not a sprint to recover.

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COVID-19: Vaccines (Part 2 of 3): Protection by Antibodies is Only Part of the Story

COVID-19: Vaccines (Part 2 of 3): Protection by Antibodies is Only Part of the Story
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 H. Figurski, Ph.D & Survivor of Brain Injury

Vaccination against COVID-19 primes your immune system to be ready to use every defense it has to fight the virus. It stimulates the creation of a potent and specific defense tailored to fight the COVID-19 virus.

Vaccination has been shown to be amazingly effective. All three vaccines for COVID-19 that have been used in the US (Moderna, Pfizer, and Johnson & Johnson) are 100% effective in preventing both hospitalization and death.

When people think of vaccination, they usually think only of antibodies. But this ignores the stimulation of an equally potent arm of immune system.

The bottom line is that vaccination (1) stimulates the production of antibodies that bind to the virus to prevent infection and (2) creates and activates “killer” T cells that destroy cells that have been infected.

Because antibodies are only part of the defensive power of your immune system, no one should be worried about variants, despite hysterical articles by a largely ignorant press.  We should certainly continue to monitor variants, but there is nothing to be worried about yet.  The antibodies are less able to block virus, but they still work.  Importantly, the killer T cells are unaffected by any variant.

The T cell response after vaccination against COVID-19 is as potent as the antibody arm of the immune system.  Some people cannot make antibodies, yet they do well after infection by COVID-19.

Some facts:

Your immune system is composed of two parts.  A first line of defense (Innate Immunity) acts immediately against any foreign substance.  It is non-specific.  After about a week, a specific and more potent immunity (Adaptive Immunity) has developed. The adaptive arm uses antibodies and T cells.

Vaccination stimulates your adaptive immunity, so the antibodies and T cells are ready before infection.

Scientists don’t yet know how long the anti-COVID-19 antibody levels remain high, but data show that antibodies have remained high for six months so far.  You may need to get vaccinated every year, as you do for the flu virus.

The antibody level will eventually go down, but your immune system maintains a few “memory cells” of the antibody-producing cells. These cells make antibody-producing cells immediately after infection.  So your immune system is fully armed in 2-3 days.

I strongly urge you to listen to minutes 6:25-22:00 of the interview TWiV 736 <March 28, 2021>of Dr. Alessandro Sette, a world-renowned expert on T cells and COVID-19 from The La Jolla Institute for Immunology, by Dr. Vincent Racaniello, a virologist and expert on COVID-19 from Columbia U.  Dr. Sette gives a basic explanation of T cells, the response to COVID-19, and vaccination.

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COVID-19: Long COVID and Children

Long COVID and Children
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 H. Figurski, Ph.D & Survivor of Brain Injury

It has been accepted that the infection of teens and children with COVID-19 rarely results in significant symptoms, but it’s worrisome that they may be as susceptible as anyone else to a recently identified effect of COVID-19 – a syndrome called “long COVID.”

Children with the virus often show no signs of infection, and sometimes they (and their parents) are not even aware that they have been infected.  Contrast that with the experiences of the very old.  Infection of the elderly often leads to severe disease and can result in death.  Nobody has yet been able to explain how age results in the radical difference in sensitivity to the effects of the virus.

Doctors and scientists are also unable to explain the onset of the delayed symptoms of long COVID.  In one study, 10-13% of children who knew they were infected thought they had recovered.  They tested negative for the virus, and most of their symptoms were gone. In some cases, there were several weeks of good health. But weeks or months later, they showed new symptoms. (Adult symptoms include fatigue; fever; cough; sore throat; chest pain; shortness of breath; neurocognitive problems with memory, concentration, processing, or finding words; diarrhea; headaches; insomnia; dizziness; heart palpitations; abdominal cramps, rashes; tinnitus; joint pain; depression; and anxiety.) The symptoms may last weeks or months, and some people still have symptoms after several months.

Particularly worrisome is the fact that mild or asymptomatic acute infections can still lead to long COVID.  This means that children, who were thought to be unbothered by infection, are, in fact, sensitive to long COVID.

I haven’t seen the data, but I suspect that the 10-13% number came from people who either had an obvious symptom or tested positive.  If we include the number of asymptomatic infections, the percentage of infected children who get long COVID will likely go down significantly.  If you and your children are using masks and social-distancing, then you’re already at a low risk of even getting infected.

The bottom line is that this virus still shows surprises. It’s definitely too early to relax.

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Prisoners without Bars: A Caregiver’s Tale

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Another Fork in the Road ~~~ Do You Know Someone with a Brain Injury? I Do!

Do You Know Someone with a Brain Injury? I Do!
presented
by
Donna O’Donnell Figurski 

Chances are you know someone who has suffered a traumatic brain injury (TBI.) More than 1.7 million Americans each year sustain a brain injury.  I personally know five people who are living with some form of TBI. In fact, I’m living with one.

My husband, David, had his brain injury in 2005. A professor friend of ours from Brigham Young University has one. So do my nephew, an actor/director friend from my local community theater, and the husband of my friend, Judy.

A brain injury can occur in the blink of an eye. Brain injury is not discriminating. It cares not about color, race, or creed. It can happen to a child or an octogenarian and everyone in between. A child may fall off his bike or off her swing.  A teenager may meet up with a TBI on the soccer or football field or a gymnastic mat. Car and motorcycle accidents are common causes of traumatic brain injuries. An assault in a dark alley or domestic abuse in your home can result in brain injury too. One can even have a traumatic brain injury while exercising (e.g., while doing chin ups in the wee hours of the morning after doing Tai Chi while listening to Deuter or some other new age CD). David did!

Like snowflakes, no two brain injuries are the same. Each survivor is different too and each method of healing is unique to the person who is struggling to regain his or her former life. With a lot of hard work, patience, and persistence many survivors can enjoy a “new normal” life.

Check out this article, Facts About Traumatic Brain Injury, for more information.

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Survivors SPEAK OUT! Meghan Beaudry

Survivors SPEAK OUT! Meghan Beaudry

presented by

Donna O’Donnell Figurski

Meghan Beaudry – Brain Injury Survivor

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

     Meghan Beaudry

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

     Houston, Texas, USA        meghan_wang@yahoo.com

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

     In 2009, I developed lupus, an autoimmune disease, that turned into brain inflammation. I was      twenty-two. Five years later, in 2014, I had another severe brain inflammation flare in which I forgot both how to walk and much of my past.

4. How did your brain injury occur?

Lupus is an autoimmune disease.

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

I first realized something was wrong when I began to struggle in grad school.

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

A female Doctor.

A female Doctor.

I had a difficult time getting diagnosed, so I did not receive treatment the first year I was sick. I saw seven doctors before I was diagnosed with lupus. 

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?

No.

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

I have some short-term and long-term memory loss. While I don’t have noticeable balance problems, I have a poor sense of balance for someone my age.

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

My life has changed in many ways since I’ve survived brain inflammation. In some ways, it has improved. I’m more fearless and confident. Because living with brain injury and lupus takes up so much energy, I have little energy for negative thoughts and people who might hold me back

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

I miss being able to memorize information quickly and with little effort.

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

I never would have started writing if I hadn’t developed a brain injury. It’s been an honor to be able to share my experience so that others with brain injuries can feel less alone.

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

I dislike the fatigue that comes with lupus, as well as worrying that I will have a memory slip when speaking, presenting, or performing.

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

What has helped me let go of my grief is understanding that, while living with brain injury is not a choice, grief is. I’d rather only live with one chronic condition than with two.

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

It took a while for my family to accept that my abilities and needs were different after my diagnosis. My second episode of brain inflammation led to my divorce because my husband was emotionally unable to handle it.

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

I’ve been lucky to know friends who understand my limitations, especially because of the fatigue I experience daily. In many ways, brain inflammation has deepened many of my existing friendships.

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

When I was very sick and bedridden with the second brain inflammation flare, my mother-in-law moved into my house to take care of me. Her selflessness and positive energy were huge factors in my recovery.

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

I hope to have published a memoir about my experience.

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 use my phone to help me remember everything. There are so many apps to help you keep track of your life.

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

Always remember that the lowest point in your injury/life is not the point at which you will stay forever.

 

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Caregivers SPEAK OUT! . . . Drew Niemann

Caregivers SPEAK OUT! Drew Niemann

presented by

Donna O’Donnell Figurski

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

Drew Niemann – Caregiver – Host of A Battle Within

Drew Niemann

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

Lancaster, Pennsylvania, USA

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

My wife, Terry

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

(No answer)

-What caused your survivor’s brain injury?

Terry had a bicycle accident and two falls, which resulted in three concussions within three years. The second impact syndrome certainly played a role. (Second impact syndrome happens when the brain swells rapidly shortly after a person suffers a second concussion before symptoms from an earlier concussion have subsided.)

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

On and off – beginning in September 2014 

-Were you the main caregiver?

Terry Niemann – Survivor of Brain Injury & Drew Niemann – Hosts of A Battle Within

Yes

-Are you now?

I’m more of a “support” person now.

-How old were you when you began care?

49

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?

Yes

-If so, were you able to continue working?

Yes

7. Did you have any help?

Yes

If so, what kind and for how long?

On and off for days and weeks

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

Immediately

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

No

A Battle Within – Podcast

10. Did your survivor have rehab?

Yes

-If so, what kind of rehab (i.e., inpatient and/or outpatient and occupational, physical, speech, and/or other)?

Terry had physical, occupational, speech, vestibular, and vision therapies – all as an outpatient.

-How long was the rehab?

The duration of therapy depended on the particular injury being treated.

-Where were you when your survivor was getting therapy?

(No answer)

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

Day to day living; assistance in accommodating and with medical appointments

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

Some days are better; some days, worse.

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

I miss outdoor and physical activities. 

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

I have a clearer understanding of what is important in life.

15. What do you like least about brain injury?

I dislike what the brain injury has taken from Terry and the pain it has caused her and continues to cause her.

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

Time

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

Yes. Roles changed in the household. Terry’s no longer able to work as a teacher, so it has affected us financially as well.

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

Yes. We cannot do the things we once did or do them to same level. We need to choose differently now.

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

(No answer)

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 patient. Learn as much as you can. Take time for yourself. Be sure to allow your loved one to do what he or she capable of. If you can and if it is possible, allow for his or her independence.

Get Your Copy Now

Read It! Review It! Listen to It!

Click Links under Book

PAPERBACK!        Read it Now!             e-BOOK!      Read it Now! AUDIO BOOK Listen to it Now!

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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Caregivers SPEAK OUT! . . . . Roxanne Greene

Caregivers SPEAK OUT! Roxanne Greene

presented by

Donna O’Donnell Figurski

Roxanne Greene – Caregiver for a survivor of brain injury

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

Roxanne Greene

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

Wichita, Kansas, USA

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

My husband was 35 years old when he developed sepsis due to an unknown infection. While he was at the hospital for that, the doctors discovered the presence of three frontal lobe brain tumors. My husband’s brain lost oxygen as they were trying to save my husband’s life. He also had a secondary brain injury – brain swelling – after brain surgery.

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

I began as my husband’s caregiver on February 13 2007 – the day I took him to the Emergency Room. I was his main caregiver then, and I still am now. I was 38 years old at the beginning of this journey – 12 years ago.

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

My husband and I had four young children – ages 3-12 at the time.

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

I was not employed at the time. I was a stay-at-home mom.

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

I was very blessed to have a lot of support. My husband’s parents were able to help, and I had other friends and family that came alongside me – helping with the children, meals, or house, etc.

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

The support began the minute we arrived at the hospital. Our pastors met us there shortly after we arrived. During my husband’s entire hospital stay and even through rehab, I always had someone with me.

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

Yes. My husband was in a coma about 5-6 weeks. He woke up very slowly and had to learn everything all over again. It was a very challenging time for the both of us. I was there as his cheerleader – cheering him on. It was hard to have a balance between caring for my husband and taking care of the children. I was very overwhelmed at times, but again, family support was crucial to my husband’s success.

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

Yes. My husband had inpatient rehab for about a month, and then he transitioned to in-home rehabilitation, where the therapist would come into the home to do therapy. My husband had physical, occupational, and speech therapies and even counseling. He was in intensive therapy for about a year, and he had outpatient cognitive therapy off and on for another year?

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

My husband’s brain injury caused him to become aggravated easily. He has had memory problems and also issues with communication. I had to watch him when he was around the children in the beginning. He was totally dependent on me for everything. I was like a single mother – I paid the bills, and I took care of the house, cars, etc.

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

My life has changed drastically. My husband and I both say our new marriage started February 13th, 2007. He was then, and is now, a different person. We had to figure out how to be married again to each other as new people. It has been good because our love is stronger than before. It has also been very difficult because this is not what I pictured for my future. I have moments of self-pity and sometimes wish it could be the way it was. Those moments are fleeting, and I know I have so much to look forward to.

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

I miss my husband’s going to work every day. I miss his doing projects around the house. I miss his being able to be the protector and the provider that he once was. I miss being a stay-at-home mom and spending one-on-one time with the children (even though most are grown now).

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

My husband and I get to spend more time together. My husband is more loving than before. Before injury, he worked a lot and was not home as often.

  1. What do you like least about brain injury?

I miss having more financial freedom. I sometimes don’t like having to do everything, including all the paperwork that goes into maintaining a home. I have to organize all of my husband’s doctor appointments, medications, and dealings with SSDI (Social Security disability insurance). It can get so overwhelming sometimes that I just want to cry.

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

Accepting the reality of my husband’s condition has helped. It is what it is. There is nothing I can do to change what happened to my husband. I decided I can either wallow in self-pity or pick up my feet and move forward. I have also read many books on brain injuries and educated myself through this journey. The one thing I wish for is a brain injury support group for caregivers. I know I am not alone.

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

Yes. I have become the main parent and disciplinarian, as my husband cannot parent without getting overwhelmed and angry. He has improved, but the children, even as adults, come to me for advice.

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

We both had close friends before my husband’s brain injury. We would go out and socialize and have people over often. Now we still have friends, but we rarely have anyone over to our house. We go out with family once in a while, and my husband has a few friends that will invite him to lunch once a month. It sometimes happens that my husband will not make the most appropriate comment.

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

I am a grandparent now, which brings a new set of challenges. My plans are to continue my education. I am in school to become an ASL (American Sign Language) interpreter for the deaf. I had to go back to work to increase our income just so we could pay the bills. I would love to travel some, but I am not sure if that will ever become a reality, as I have to work full-time.

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

Roxanne Greene – Caregiver

Even though your life has changed, remember you are stronger than you realize. I look back and think of how much I have accomplished and learned about myself during this time. I am not sure I would have gone back to school if my husband had not become ill. Caregivers have been giving a gift that most people never get to experience. We get to see miracles every day as our loved ones fight to improve their lives. It’s a humbling thing to be a part of such a journey.

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

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Prisoners without Bars: A Caregiver’s Tale

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COVID-19: The President’s Infection (Part 1 of 4)

COVID-19: The President’s Infection (Part 1 of 4)

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 this post.)

This is an unusually long post, so I’ve divided it into four parts. It is easy to read, even though it’s filled with much information.

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

The complete story of the President’s COVID-19 infection and treatment is not known by the public. Virologist, Dr. Vincent Racaniello, interviewed Dr. Daniel Griffin, a New York City physician who has been treating hospitalized COVID-19 patients since the beginning of the pandemic. Vincent has been releasing podcasts about COVID-19 every couple of days. His TWiV podcast (This Week in Virology) of October 5, 2020, is a special podcast in which he and Dr. Griffin have a conversation about COVID-19 infection and treatments, as they relate to the President’s infection.

Vincent Racaniello is a professor and virologist and my former colleague in the Department of Microbiology & Immunology at Columbia University. His guest, Daniel Griffin, is a physician in the Infectious Disease Department of Columbia. Because Dr. Griffin has both an M.D. and a Ph.D., he is a physician-scientist and so has an additional appointment as Professor of Biochemistry & Molecular Biophysics. Dr. Griffin is also the Chief of the Division of Infectious Disease for ProHEALTH Care Associates. ProHEALTH Care is the largest physician-owned multi-specialty practice in the nation. He is also on the COVID-19 response team for the tri-state area.

Dr. Griffin has applied his clinical and molecular knowledge of COVID-19 to the few details we know about President Trump’s infection. In doing so, we now have a better idea of the President’s case. I urge you to listen to the complete 34-minute TWiV podcast of October 5th. I have defined some terms and explained some concepts that may be unfamiliar to you.

President Trump announced at 1:00 am on Friday, October 2, 2020, that he and the First Lady tested positive for COVID-19. Later that day, the President was admitted to Walter Reed National Military Medical Center. He returned to the White House at 6:30 pm the next Monday. Many of the details of the infection and the President’s condition have remained unknown.

When the President’s COVID-19 infection began is unclear. The President first reported a positive test in the early morning of October 2nd. The President said he is not tested for COVID-19 every day, and the White House will not say when the President’s last negative test occurred. In his Town Hall on October 15th, the President said he didn’t know for sure that he had taken a test before the debate three days before he was admitted.

(To Be Continued)

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(Photos compliments of contributor.)

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