TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘Donna O’Donnell Figurski’

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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Long COVID . . . . . . . . . . . . . . Serious Long-term Effect of Some COVID-19 Infections

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


by


Columbia University Professor Emeritus, Dr. David Figurski

presented by

Donna O’Donnell Figurski

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

David Figurski

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

Finally – the news I’ve been waiting for!

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

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

What is long COVID?

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

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

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

Scientists and doctors don’t know the cause.

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

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

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

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

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Indie Spotlight – Donna O’Donnell Figurski

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

donna o’donnell figurski – author

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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! 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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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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Survivors SPEAK OUT! Danielle Skranak

Survivors SPEAK OUT! Danielle Skranak

 presented by

Donna O’Donnell Figurski

Danielle Skranak 1 051621

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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New News: Honorable Mention BETSY’S RAINBOW BALLOONS

Holy Jumping Jugglers!

Remember when I told you I entered a children’s picture book contest, Spring Fling Kidlit Contest 2021? I had to write a story from scratch with only 150 words – no more!

I posted my story, BETSY’S RAINBOW BALLOONS, on Bookity Blog several weeks ago and forgot about it. Tonight one of my CPs (Critique Partners) sent me a message to tell me that I won an honorable mention for my story.

Holy Giggling Grasshoppers!

I can’t believe it. Just like my first graders always jumped for joy when they accomplished something fun, I am jumping for joy now. Yippee!!!

Holy Bopping Balloons!

Congratulations to the WINNERS and the other HONORABLE MENTIONS. Heck, congratulations to all who entered.

AND…. Drum Roll….THE WINNERS ARE!

A big RAINBOW thank you to the contest organizers, Kaitlyn Sanchez and Ciara O’Neal. What a lot of work!

Read more stories at Bookity Blog.

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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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Survivors SPEAK OUT! Annie Ricketts

Survivors SPEAK OUT! Annie Ricketts

presented by

Donna O’Donnell Figurski

Annie Ricketts – Survivor of Brain Injury

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

Annie Ricketts

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

Isle of Wight, United Kingdom

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

July 23, 2000    Age 36

4. How did your brain injury occur?

I flew off a horse.

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

I was diagnosed with a severe TBI (traumatic brain injury) in the hospital.

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

None! On the day of the injury, I was left in the waiting area alone and unconscious for four hours. The next day, I was taken back to the hospital by ambulance and admitted. I had no scan – no observational tests were taken at all. I was sent home three days later without seeing a specialist.

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

I was unconscious after the accident, but never in a coma.

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?

As an outpatient, I had occupational and speech therapies from year 5 to year 6.5 post injury. These therapies were repeated in years 10, 14, and 18.

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

My problems are complex and multiple, but there is no visible physical impairment.

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

It is fabulous!

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

Nothing

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

Living life with a purpose

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

My executive-function impairments intrigue and fascinate me. There is nothing I like least. I accept everything and continue to work on improving.

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

I had a total loss of self-awareness, so I didn’t ever have any problems with acceptance. It is a different journey.

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

My family didn’t understand – it took a lot of time. Now, I get a lot of understanding and support.

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

I have been isolated since the injury, and I want to remain this way. I had a normal social life before.

17.Who is your main caregiver?

My daughter.

-Do you understand what it takes to be a caregiver?

Yes, absolutely.

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

I hope to be doing what I am doing now – only less hours!

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.

Annie Ricketts – Brain Injury Survivor

Neuroinflammation starts straight after injury. It is like a switch being flicked ON. For many people, this inflammatory response continues until it is addressed. Research shows it can last upward of 17 years post injury. If you would like to know more about this and how inflammation creates and exacerbates symptoms, please visit globalbia.org.

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

Take care of your body – it is connected to your brain.

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