TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘Traumatic Brain Injury’

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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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! . . . . 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.

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Prisoners without Bars: A Caregiver’s Tale

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Caregivers SPEAK OUT: . . . Author, Abby Maslin

Caregivers SPEAK OUT: Author, Abby Maslin

presented by

Donna O’Donnell Figurski – author

Prisoners without Bars: A Caregiver’s Tale

 

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

 

 

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

Abby Maslin

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

Washington, DC, USA

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Love You Hard by Abby Maslin

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

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

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

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

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

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

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

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

15. What do you like least about brain injury?

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

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

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

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

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

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

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

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

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

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

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

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

 

Stay Safe and Healthy!

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COVID-19: Love in the Time of a Pandemic

COVID-19: Love in the Time of a Pandemic

by

Columbia University Professor Emeritus, Dr. David Figurski

presented by

Donna O’Donnell Figurski

(Disclaimer: The World Health Organization <WHO> has officially named the new coronavirus as SARS-CoV-2 and the disease it causes as COVID-19.  Because the majority of people, including much of the press, commonly refer to the virus as “COVID-19,” to avoid confusion I use COVID-19 as the name of the virus in these posts.)

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

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

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

Desert near the White Tank Mountains

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

Donna & David Figurski Wedding Anniversary #51

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

David & Donna Figurski – so happy together

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

Love is worth celebrating wherever and whenever you can.

Stay Safe and Healthy!

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

Read All About It!

Prisoners without Bars: A Caregiver’s Tale

presented by

Donna O’Donnell Figurski – author

Donna & David with ARC of Prisoners without Bars: A Caregiver’s Tale

 

My memoir, Prisoners without Bars: A Caregiver’s Tale, is not only a story of David’s and my struggles after his traumatic brain injury, but it is also a love story. Though my memoir addresses a dire topic, it is peppered with comedic situations. They say laughter is the best medicine, and again, they are right.

Prisoners without Bars is a heart-wrenching memoir that will make you laugh, cry, and G-A-S-P. I promise!

 

Boy Laughing

 

Girl Crying girl-crying-clipart-34

Girl Gasping 2

It’s not a beach read, but it reads like one. It’s fast! It’s easy! It’s fascineasy. I mean fascinating.

What Readers are Saying!

Jackie said – “A beautiful and touching story.”

Anonymous Amazon Customer said – “I loved this book. almost couldn’t put it down.

jlgwriter said – “I found the story powerful and compelling.

Todd & Kim said – “This is such an inspirational story of survival! The book is a very easy read and informative as well as inspiring!!”

Judy said – “Donna O’Donnell Figurski tells her story of grace, love, frustration, anger, disappointment, strength, joy, and above all hope.”

Marge said – “I read it in one fell swoop… I guess the word that would describe your book, your life, and who you are is SUPERCALIFRAGILISTICEXPIALIDOCIOIUS.”

Anonymous said – “This book pulled me in immediately and didn’t let me go until the end! ”

Helen said – “Could not put this book down. Written for easy reading. It was like having a conversation with a friend.” “I finished it in one day with some teary moments along with some chuckles. A must read!!”

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Stay Safe and Healthy!

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

Survivors SPEAK OUT! Nolan McDonnell

presented by

Donna O’Donnell Figurski

Survivor of Brain Injury – Nolan McDonnell

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

Nolan McDonnell

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

San Jose, California, USA     Nolan@CoachNolan.com

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

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

4. How did your brain injury occur?

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

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

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

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

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

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

Yes – fifteen days.

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

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

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

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

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

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

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

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

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

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

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

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

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

No

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

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

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

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

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

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

My mother

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

(not answered)

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

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

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

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

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

Nolan McDonnell – Survivor of Brain Injury

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

 

Stay Safe and Healthy!

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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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