TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘blogtalkradio.com’

New News: . . . . . . . . . . . . . . . . . My New Author Website is Live!

My New Author Website is Live!

by

Donna O’Donnell Figurski

I had the website for “Donna O’Donnell Figurski – Author” reformatted. It’s now live. I love it!

To see it, go to donnafigurski.com.

 

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COVID-19 — It’s Everywhere . . . Breakthrough in Basic Research May Defeat COVID-19

Breakthrough in Basic Research May Defeat COVID-19

by

Columbia University Professor Emeritus, Dr. David Figurski

presented by

Donna O’Donnell Figurski

 

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

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

 

Exciting results indicate that a novel idea might bring COVID-19 under control.  The new technology has been shown to work at the lab bench.  Now scientists are doing animal studies and, later, human studies.

Scientists at Boston University (BU) and the University of California at San Diego (UCSD) have made coated nanoparticles that are covered with pieces of lung cell membrane. (About 1000 tiny particles, or “nanoparticles,” can line up in the space equal to the width of a human hair.) The coated nanoparticles mimic the lung cells that normally bind the virus and allow an infection to start.  But, when the virus tries to infect a coated nanoparticle, the virus dies.  Essentially, the coated nanoparticle is a lethal decoy.

Research in the lab indicates that the new technology might be able to end the COVID-19 pandemic. Also, if the technology works in humans, coated nanoparticles will likely be important for inactivating other viruses and for dealing with future pandemics.

Specific nanoparticles can be made to mimic any cell that any virus infects.  So, coated nanoparticles can be made that are specific for any virus (for example, for influenza virus or for Ebola virus).  Also, once the cell normally infected by a previously unknown virus to start an infection has been identified (as it was for COVID-19), the relevant coated nanoparticles can be made. So, a novel virus can be inactivated even though little is known about the molecular details of its biology.

Scientists were surprised to learn that the coated nanoparticles for COVID-19 bind the SARS-2 coronavirus even better than the lung cells normally infected by the virus.  So, this approach for COVID-19 is likely be very efficient.

In COVID-19 infections, sometimes the immune response is too active and causes severe disease or death.  The dexamethasone breakthrough I wrote about earlier works by dampening the immune response.  The scientists surprisingly found that coating another batch of nanoparticles with membrane pieces from cells of the immune system also dampened the immune response.

The scientists envision a protective coated nanoparticle mixture for COVID-19 that has two types of coated nanoparticles (one that mimics the lung cells that are infected and another that dampens the immune response). The mixture would be simply administered as a nasal spray.

 

Stay Safe and Healthy!

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COVID-19 — It’s Everywhere . . . Drug Breakthrough Significantly Prevents COVID-19 Deaths

Drug Breakthrough Significantly Prevents COVID-19 Deaths

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.)

COVID-19

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

Research at the University of Oxford in England showed for the first time that a drug prevented a major fraction of deaths in severely sick patients with COVID-19.

Dexamethasone was found in a large clinical trial to cause a significant reduction in deaths. It can be prescribed as pills, and it is a common, readily available, and relatively inexpensive drug

A major problem after infection by COVID-19 is that the immune response of some individuals is too aggressive (often causing what’s called a “cytokine storm”) and can lead to death. Because dexamethasone is a steroid that dampens the immune response, the prediction was that it might help to prevent deaths by COVID-19.

The research showed that it does.

There are about 3 deaths for every 8 patients on ventilators.  Dexamethasone treatment reduced those deaths by one-third.  So, 1 death would be prevented for every 8 patients on ventilators.  About 5 deaths occur in every 25 patients on oxygen only. Dexamethasone treatment reduced those deaths by one-fifth, or about 1 less death for every 25 patients on oxygen only. Dexamethasone treatment had no effect on patients not on ventilators or receiving oxygen only.

Given that a major fraction of the over 118,000 deaths in the US so far (at 6:00 pm ET on June 18, 2020) were on ventilators or oxygen only, dexamethasone treatment is predicted to prevent many deaths.

The UK’s Chief Scientific Adviser, Sir Patrick Vallance, said: “This is a ground-breaking development in our fight against the disease, and the speed at which researchers have progressed finding an effective treatment is truly remarkable.”

 

Stay Safe and Healthy!

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COVID-19 — It’s Everywhere . . . Progress in Controlling COVID-19

Progress in Controlling COVID-19

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.)

COVID-19

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

 

 

I want to tell you about an amazing podcast, TWiV (This Week in Virology), created and hosted by Dr. Vincent Racaniello, a colleague of mine at Columbia University.

Vincent’s a virologist who has done cutting edge research on the molecular biology of influenza virus, poliovirus, and rhinoviruses (which cause the common cold). His podcasts feature several PhDs in microbiology (virologists, an immunologist, a parasitologist, and a science reporter who earned his PhD with Vincent) discussing the latest research and advances in viruses.

Vincent has been self-quarantining at home. Consequently, since March 13th, he has made more than 30 podcasts, nearly all concerning COVID-19, potential therapies and vaccines, and pandemics. His guests have been infectious disease scientists doing research or physicians in the trenches learning about the clinical manifestations of the virus and how to treat their patients.

Dr. Vincent Racaniello – Columbia University Virologist

Vincent’s podcasts are made for non-scientists to understand, but they are 1-2 hours long. Probably none of you has the time to listen that long. Therefore, I’m trying to listen to them so I can point you to episodes and minutes you may want to hear.

Podcast #622, released June 2, featured Dr. Emmie de Wit of the Rocky Mountain Labs in Montana. She’s a virologist doing drug and vaccine research in monkeys. Because Rocky Mountain Labs is one of the few places in the country with a high-safety-level facility, Dr. de Wit has worked with several dangerous viruses: SARS-1, MERS, pandemic influenza strains, and Ebola. Now she’s working with SARS-2.

I’ve boiled down Episode #622 to four segments totaling ~16 minutes.

  1. 26:05-26:35 – The spike protein of the virus coat initiates infection of a cell by attaching to the ACE2 protein (angiotensin converting enzyme 2) on the cell’s surface. Here Emmie tells how it took only days to identify ACE2 and confirm viral binding. Rich Condit, a virologist, was astonished by the speed. ACE2-binding by spike is a potential drug target.

 

  1. 37:15-39:44 – The PCR test (polymerase chain reaction), simple enough to be done on a large scale, detects the 30,000-nucleotide (or base) RNA chromosome of the virus. But, PCR is so sensitive that it can detect degradation fragments of the RNA, even though the person is no longer contagious. The only way to tell for sure is to detect viable virus in cell culture. This is hard to do and is only done in virology research labs. As a result, a person is considered infected and contagious if the PCR test is positive.

  1. 43:35-54:05 Remdesivir, an antiviral drug, is a nucleotide-analog that blocks the copying of the RNA chromosome to make more virus. Emmie showed that giving remdesivir to monkeys early (at 12-hours post infection) was very effective. But, humans don’t show symptoms for days, and, because remdesivir must be administered intravenously, patients are only given remdesivir if they are hospitalized. This is very late, and still there is a modest effect. Rich Condit talks about the possibility of producing an oral form of the drug. Then remdesivir could be taken earlier – maybe even at home – and might be very effective in humans.

 

  1. 58:25-60:40 This segment concerns a vaccine. (I’ll write more on this topic later, but you should know that there are three types of promising technologies: the viral protein-based, the viral gene-based, and the virus vector-based, in which a harmless virus carries a gene from a disease-producing virus for a protein that’s needed to infect cells.)2ff087415a5009984739aa8fde5d5d4a

Emmie tested a harmless chimpanzee adenovirus that was engineered to carry the COVID-19 spike gene. This adenovirus produces the coronavirus spike protein, needed for COVID-19 to infect cells. So, this harmless adenovirus should cause us to make antibodies that will block infection by COVID-19.

In Emmie’s experiment in monkeys, the vaccine worked so well that it allowed clinical trials to proceed in humans.

Stay Safe and Healthy!

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COVID-19 — It’s Everywhere . . . To Open or Not to Open

COVID-19 . . . To Open or Not to Open

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.)

COVID-19

David H. Figurski, PhD — Brain Injury Survivor — Professor Emeritus of Microbiology & Immunology — Columbia University

 

Some governors say “Open.” Scientists say “Don’t open.” Whom do you believe?

I’m a scientist.  I know where I stand.

Below are some facts to help you decide.

For those of you in the west, the coronavirus infections have just begun.  You can see from the map of May 19 (see below) that infections are still moving westward.

Coronavirus Map – New York Times – 05/19/20

Many people, particularly those in the west, don’t seem to understand that the US is still in the early stages of this pandemic. They are lulled by the low number of cases in their state. The numbers are misleading for two reasons.

(1) Only seriously symptomatic (mostly hospitalized) people and celebrities are being tested because the US is seriously in need of more testing.  (2) The virus has not reached you yet. (That’s the especially true in the western half of the US.)

New York City is still very bad, but strict social-distancing guidelines have produced a significant drop in new cases.

Washington State had the potential to become a major hot spot, but they acted quickly and aggressively.

In contrast, several states are opening up and relaxing guidelines, despite a continued rise in new cases.  (That’s the case here in Arizona, where Governor Ducey allowed restaurants to open this week. This decision is particularly horrifying because the pandemic hasn’t really reached us yet.)

Reported cases in the United States

(Every red dot represents a cluster of infections – probably started by an infected asymptomatic traveler.  Right now, most cases are in the east, but every day you see more red dots in the western half of the US.)

 

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

Stay Safe and Healthy!

 

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Survivors SPEAK OUT! ………. Mimi Hayes – Survivor, Author, Comedienne

Survivors SPEAK OUT! Mimi Hayes – Survivor, Author, Comedienne

presented by

Donna O’Donnell Figurski

(author of Prisoners without Bars: A Caregiver’s Tale)

 

Mimi Hayes – Survivor of Brain Injury Author of “I’ll Be OK, It’s Just a Hole in My Head”

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

Mimi Hayes

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

Brooklyn, New York, USA

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

My brain injury happened approximately in late August 2014. I was 22 years old.

4. How did your brain injury occur?

I got a bad migraine while I was on a blind date. After about a week, I’d developed weird symptoms, vision problems, coordination difficulties, etc.

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

My mom knew pretty quickly that something was wrong. It wasn’t until after a few doctor visits

that we got an MRI (magnetic resonance imaging) and it was finally taken seriously.

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

MRI

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

Nope

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 was in inpatient therapy for two weeks and in outpatient therapy for about three months. I had speech, occupational, and physical therapies.

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

I have some lasting vision issues on the left side, but they’re minimal and happen only when I’m tired. I have issues with concentration, memory, fatigue, coordination, and sensitivity to lights and sounds.

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

My life changed for the better in every way. Yes, it’s hard to have to adjust to a new brain, but I would never be where I am or who I am without this experience

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

Probably just being a bit more fit. I used to play ice hockey, and my brain completely forgot that

muscle-memory. Also, I wasn’t such a scatterbrain, but that’s endearing most of the time.

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

Challenging myself to live in New York City, a place where I never imagined I could live with a TBI (traumatic brain injury).

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

I don’t like that my brain injury has elevated my anxiety, which I had before the injury. It’s probably a low-grade PTSD (post traumatic-stress disorder) tied to all things medical.

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

I don’t think I’ve ever not accepted my brain injury. It’s just that I forget it sometimes. I maybe do something I could have done before with no problem, like a concert, but I’m completely exhausted the entire next day.

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

Sure. My family had to learn about my new challenges. We had to stop eating dinner with the TV on in the background, and we learned that I’m quicker to anger. They never weren’t there for me, and, if anything, my brain injury brought me much closer to them.

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

I’ve always been very social. It’s just that now I have to power-down more to recharge.

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

Me. But, I don’t really understand what it takes to be a caregiver. I was a nanny to three small boys for a year, and that was a lot of work! But no, I’ve never been a caregiver.

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

Hard to say, but I’d like to put out a few more books, do a TED Talk, and continue to travel with my comedy. As soon as theaters are back open, I’d like to put my one-woman show on off-Broadway.

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.

Just give yourself grace. Don’t compare yourself to other people’s recoveries or even to who you used to be before. Also, it’s OK to change who you are after a near-death situation. It’s OK to change your job, your city, hell, anything you want. You deserve to explore the new you.

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

There’s a great big community out here. You are not alone. You’d be surprised how many people I’ve met on Instagram and now consider them to be best friends. I would have never met them in real life.

We are strong, and we all want to share our stories with each other and connect. My advice is to get online, start using hashtags, and explore. You will find us. And, we can’t wait to connect with you!

To learn more about Mimi Hayes, visit her website.

Mimi Hayes Website

Mimi Hayes’ book, I’ll Be OK, It’s Just a Hole in My Head

 

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On the Air: . . . . . . . . . . . . . . . Guest: Dr. David Figurski

On the Air: Guest: Dr. David Figurski

presented by

Donna O’Donnell Figurski

David Figurski

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

 

Dr. David Figurski, retired professor of microbiology, talks about his brain injury and COVID-19

I don’t often publicize my radio show on the Brain Injury Radio Network, but one of our brain injury survivors is knowledgeable about the COVID-19 pandemic, which I’m sure is on your mind.  Like me, you probably have lots of questions.

My guest on the April 19th show was my husband, Dr. David Figurski.  David has been living with several physical disabilities since January 2005, when he had a brain hemorrhage, but, fortunately, after three brain surgeries in two weeks, he was unaffected cognitively.  For 35 years, including eight years after his traumatic brain injury, David was a professor in the Department of Microbiology & Immunology at Columbia University, where he also had a research lab.  David has done research on bacteria and viruses for 45 years.  Unsurprisingly, he has been very interested in the new human coronavirus and the global pandemic it has caused.news-clipart-news-anchor-4

My 80-minute show was live on April 19th, but it was recorded and can now be listened to at any time as a podcast.  My interview of David has two parts.  From 9:30 to 49:50, David and I talk about life with his brain injury.  From 49:50 to the end, David and I discuss the COVID-19 pandemic.

To Listen Go To:

SPEAK OUT! On the Air with . . . Brain Injury Radio Show Menu “Another Fork in the Road”

blogtalkradio.com/braininjuryradio/2020/04/20/another-fork-in-the-road-bi-survivorcolumbia-prof-dr-david-figurski-covid19

 

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Past Blast – “Guest Blogger … Ken Collins – 38 Tips for Living with a Brain Injury”

Past Blast  (originally published December 29, 2014)

SPEAK OUT! Guest Blogger: Ken Collins

(Host on the Brain Injury Radio Network)

offers

38 Tips for Living With a Brain Injury

 

Boy Blogger thOn December 31st, I will have lived with a traumatic brain injury for 38 years. I have used several strategies for co-existing with and minimizing the effects of my TBI. I know now that the brain-injury recovery process is ongoing and that there are four major areas to work on during recovery: (1) Getting Organized, (2) Being Responsible, (3) Following Through, and (4) Moving On. I learned a lot over the years, and I want to share my experiences. I have listed 38 tips (one for each year) that could be helpful to you.

 

1. Regain trust in yourself and in others.

2. Try not to be critical of mistakes you make. In the early years of your recovery, there will be too many of them to count. Learn from these mistakes and move on.

3. Find purpose and meaning in your life again. This will make it easier to get out of bed in the morning. Having a sense of purpose and meaning will give you something to live for and will help you feel worthwhile, help motivate you, and improve your recovery process. You will start feeling better about yourself.

4. Keep stress and anxiety to a minimum every day. Reducing stress and anxiety will Stress free zoneincrease your self-esteem and make life easier. Stress and anxiety trigger the fight-or-flight response in the mid-brain. You don’t have any control over this response because it is part of the Emotional Nervous System. When the fight-or-flight response is activated, it increases confusion and makes it harder to process information.

5. Regain your self-confidence and self-respect.

6.Be proactive.

7. Stay focused, calm, and relaxed as much as possible. This will make it easier to think, and you become less dependent on others to remind you. Becoming more responsible for yourself will build good habits on your part and will improve your self-esteem and self-confidence in the long run.

8. Get a large calendar. Put it up on your wall and use it. Make sure it’s in a location where you will always see it. An iPad (or clone), a smart phone, or a note pad with a calendar and alarm does the same thing. A calendar will also relieve stress and anxiety by helping you stay on task and not forget.

Key rack9. Get a key-holder and put it by your door to put your keys on when you come home. Do this every night so you won’t have to look for your keys in the morning. Starting your day off on the right foot will make your day easier and help to relieve stress and anxiety.

10. Make a “To Do” list to help you stay organized. iPads, iPhones or other smart phones, and note pads work wonders with this. The list will help you and make you feel good about yourself.

11. Making a list before you go shopping will save you money by cutting down on impulse-buying. It will also help you become more responsible and less dependent on others. Being less dependent on others improves your self-esteem.

12. Get lots of rest, and slow down. Many times we try to do too many things at once, and nothing gets done. Sleeping on an issue or concern can be the best way to help you figure it out. Getting enough rest will give you valuable energy to think better and solve difficult situations. Sufficient rest will also relieve stress and anxiety.

13. Set up a routine and stick to it. A routine will make it easier for you to follow through with what you have planned for the day. By doing the same thing every day, you will start building trust in your capabilities again.

14. Eat healthy foods, and get lots of exercise. Doing these things will help you get the blood with its oxygen circulating to your brain.Healthy Foods

15. Get a dog and take it for walks. In my case, I have nine dogs, and they take me for a walk every morning and night! They also give me the unconditional love and companionship I need to feel good about myself and be happy.

16. Find ways to relax that aren’t counterproductive to your well-being. Abusing alcohol and drugs to “relax” is counterproductive. Long walks, yoga, and Tai Chi are much better for you and will make processing and problem-solving much easier. Stress and anxiety will be reduced.

17. Be patient.

18. Pay attention and become an active listener. Actively “hearing” what people have to say is more important than passively “listening” to what they say. Watch their body language. When I get distracted, sometimes it is harder to understand what a person is saying. Stay relaxed and focus. Take deep breaths – nothing works better than getting oxygen-filled blood to your brain.

19. Be around positive people and people who care about you. Nothing is more depressing than listening to someone who’s always complaining about his or her life or about what is going wrong in the world. Become active. Don’t just sit around hoping things will get better. Quit talking about a problem, and do something about it instead.

20. Don’t take criticism personally. When people don’t understand things, they criticize them. Constructive criticism can make you a better person in the long run.

21. Keep an open mind. Remember that your family and friends want to help, but sometimes they don’t know how. Many people don’t understand what you are going through, so don’t hold them responsible for this.Breathe

22. Stay calm; stay relaxed; take deep breaths; and move on!

23. Be careful of those you hang out with because they will set the stage for how you act. Friends who judge others and criticize you aren’t “friends.”

24. Grudges will only hold you back. They will be like anchors and keep you from being able to move on.

25. Lighten up on yourself, your family, and friends who want to help you.

26. Worry less and smile more.

27. Be content with what you have. Others have it much worse than you.

28. Find ways to stay active and be less isolated. Get out of your head and into the outside world.

Never Give Up29. Don’t give up – embrace adversity. Have adversity give you the resolve it will take to get better and improve your life. This will be up to you and no one else. People will be there to help you, but all of the work will be up to you. Use it or lose it!

30. Take ownership of your recovery. Remove the word “can’t” from your vocabulary.

31. Life is hard for most people. Life after a brain injury will definitely be hard, but not impossible. It will get easier over time – be patient! Make the best of every day and move on.

32. Thinking too much about a problem or issue can cause depression. This will trigger the fight-or-flight response, and you will be like a dog chasing its tail.

33. Be good to yourself.

34. Don’t take life too seriously.

Ken Collins for Blog

35. Don’t let the little things get you down. When you think about them too long, they seem bigger than they really are.

36. Don’t beat yourself up over things you can’t control. This will only increase your stress and anxiety and trigger the fight-or-flight response.

37. Be happy with yourself and don’t try to live up to others’ expectations.

38. Most importantly – don’t set unrealistic expectations for yourself. Be strong. Find hope – because with hope, anything is possible!

Stop by the Brain Injury Radio Network to hear Ken. His show airs every 1st Thursday of each month from 5:00p to 6:30p Pacific Time.

Thank you, Ken Collins.

Disclaimer:
Any views and opinions of the Guest Blogger are purely his/her own.

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Survivors SPEAK OUT! . . . . . Steven A. Marderosian

Survivors SPEAK OUT! Steven A. Marderosian

presented by

Donna O’Donnell Figurski

 

Steven A. Marderosian Before TBI 20190429_120335

Survivor – Steven A. Marderosian Pre-TBI

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

Steven A. Marderosian

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

Barrington, Illinois, USA; E-mail: steven@marderosianlaw.com

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

February 28, 2018; I was 49 years old.

4. How did your brain injury occur?

AVM (arteriovenous malformation) rupture – hemorrhagic stroke

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

My wife heard me sounding confused while talking to someone on my phone. Later she saw me looking at my phone as if I didn’t know what it was or how it worked. Then I started to notice my left arm going numb, and then, my left leg. I tried to “walk it off,” but I crashed to the floor.

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

My wife raced me to the Emergency Room, where I triggered a “stroke alert” response. I recall only the very start of it. My wife was kept outside a curtain, so I don’t know any of the details before I stabilized.

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

By the grace of God, 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?

Towards end of two weeks in the Intensive Care Unit/neurology (and removal of my AVM by rare cross-craniotomy brain surgery), I had physical therapy, occupational therapy, and speech therapy evaluations in the regular hospital. I spent two more weeks in a rehab hospital for physical, occupational, and speech therapies. I then moved home with six more weeks of physical therapy and occupational therapy in a partial admission “day rehab” at the same rehab hospital. My total was more than two months of rehab.

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

My left side was paralyzed from the shoulders down – it was near total from the ribcage down. (I had no balance – I couldn’t stay up on all fours.) My left shoulder/arm/hand was moderately impaired. I have no real cognitive deficits per se, but my mental processing is disabled in high-level speed and volume capacity. My AVM was at the border of the frontal and parietal lobes, bleeding into the frontal lobe in the right hemisphere. It fractured me emotionally.

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

surfer-boy-clipart-1It’s a mixed bag. I got up on a board and surfed just three months “post op” (against a “no contact sports” order). I’m physically stronger and even faster than I was pre TBI. But, my mental processing speed and capacity are still disabled. A bipolar diagnosis a few years pre TBI (likely due to progressive blood flow abnormality) appears to have been rectified by the AVM removal. But, while my mood is more stable, I still struggle to figure out my new personality. My general emotional state is different and strange.

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

I miss the lightning-fast mental processing and the seemingly limitless volume capacity. I miss not having to relearn every maneuver in black belt karate and fighting, downhill (telemark) skiing, and all other physically demanding things I’d been doing. I miss the 6-6.5 hours of sleep per night without ever napping or feeling tired.

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

I like that I care about the real suffering in the world (i.e., not my own, by comparison), in the midst of which I lived and rehabbed. I like having a far more stable mood and seemingly being cured of bipolar disorder. I’m looking forward to this second chance to fix past mistakes and live as God wants me to. And to never, ever, fear anything in the world again – other than God.

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

I dislike needing way too much sleep and always being tired no matter what I do or don’t tired-clipart-they-7do. I don’t like figuring out my new altered personality, my future career, and even my likes and dislikes. I don’t like having to relearn every advanced physical maneuver and regaining my previous mental processing speed and volume capacity.

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

I have been greatly helped by my undying (and now bulletproof) faith in Jesus Christ; by my eldest son, who is bipolar (now I want him scanned for an AVM too) and is the only one in my family who understands my continuing emotional turmoil; and by the support of my close friends in Christ and by my BFF of 45 years.

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

I look, speak, and act “fine,” so family (except my eldest son) and others don’t really understand my continuing emotional turmoil and new personality. So, I keep my inner feelings mostly to myself (and to my BFF, to my eldest son, to my bible study group, and to my therapist).

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

I was kind of a homebody before, so my social life is not much different. But, busy, noisyno-noise-clipart-1 places, like crowded restaurants, create a sensory overload that can become overwhelming, especially after high-stress or high-volume days. It’s like I can hear every individual sound of 100 people, intercoms, TVs, and devices all blaring at once. I just want to scream, “Will everyone please just shut the f#@k up!?”

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

I’m so undeservedly blessed that I don’t have or need a caregiver anymore. My wife had to do it for the first few months after I moved back home, but I’ve been mostly on my own since then. My “emotional caregivers” are probably my BFF, my eldest son, my bible study group, and my therapist.

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

I can’t tolerate the blatant dishonesty and BS involved in practicing law anymore (especially litigation, where it’s the worst) – not my own, but that of others who simply “double down” when I catch them and call them out. Far too many “judges” seem even worse than the lawyers. My BFF and I have done construction rehab work, and we just launched a demolition and construction company. In ten years, I hope it will be my main source of income, with my eldest son working with us and me taking only select legal work “on the side” (which sounds like Heaven). I wrote a book on God’s miracles in m

Steven A. Marderosian After TBI 20190429_113920

Survivor – Steven A. Marderosian Post-TBI

y experience. I hope to write more and to speak to inspire and help others overcome their crises and follow Jesus Christ.

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.

Don’t try to force yourself back into who you were; you simply aren’t that person anymore and never will be again. I always say that as well as I’m doing now, “everything is different” somehow. Embrace who you’ve become and the power your experience and resilience have given you to overcome any obstacle. And, help others do the same.

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

Thank God constantly for every breath you take; every blessing you have; and even every challenge, setback, and outright sorrow you experience. All these things work together to achieve God’s will to make you stronger and better as the person He wants you to be. And never, ever, sweat the “small stuff” again – life’s just too short.

With all God’s blessings to all survivors everywhere,

Steven A. Marderosian

(Clip Art compliments of Bing.)

(Photos compliments of contributor)

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What is your name? (last name optional)

Steven A. Marderosian

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

Barrington, Illinois, USA; E-mail: steven@marderosianlaw.com

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

February 28, 2018; I was 49 years old.

How did your brain injury occur?

AVM (arteriovenous malformation) rupture – hemorrhagic stroke

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

My wife heard me sounding confused while talking to someone on my phone. Later she saw me looking at my phone as if I didn’t know what it was or how it worked. Then I started to notice my left arm going numb, and then, my left leg. I tried to “walk it off,” but I crashed to the floor.

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

My wife raced me to the Emergency Room, where I triggered a “stroke alert” response. I recall only the very start of it. My wife was kept outside a curtain, so I don’t know any of the details before I stabilized.

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

By the grace of God, no

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?

Towards end of two weeks in the Intensive Care Unit/neurology (and removal of my AVM by rare cross-craniotomy brain surgery), I had physical therapy, occupational therapy, and speech therapy evaluations in the regular hospital. I spent two more weeks in a rehab hospital for physical, occupational, and speech therapies. I then moved home with six more weeks of physical therapy and occupational therapy in a partial admission “day rehab” at the same rehab hospital. My total was more than two months of rehab.

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

My left side was paralyzed from the shoulders down – it was near total from the ribcage down. (I had no balance – I couldn’t stay up on all fours.) My left shoulder/arm/hand was moderately impaired. I have no real cognitive deficits per se, but my mental processing is disabled in high-level speed and volume capacity. My AVM was at the border of the frontal and parietal lobes, bleeding into the frontal lobe in the right hemisphere. It fractured me emotionally.

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

It’s a mixed bag. I got up on a board and surfed just three months “post op” (against a “no contact sports” order). I’m physically stronger and even faster than I was pre TBI. But, my mental processing speed and capacity are still disabled. A bipolar diagnosis a few years pre TBI (likely due to progressive blood flow abnormality) appears to have been rectified by the AVM removal. But, while my mood is more stable, I still struggle to figure out my new personality. My general emotional state is different and strange.

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

I miss the lightning-fast mental processing and the seemingly limitless volume capacity. I miss not having to relearn every maneuver in black belt karate and fighting, downhill (telemark) skiing, and all other physically demanding things I’d been doing. I miss the 6-6.5 hours of sleep per night without ever napping or feeling tired.

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

I like that I care about the real suffering in the world (i.e., not my own, by comparison), in the midst of which I lived and rehabbed. I like having a far more stable mood and seemingly being cured of bipolar disorder. I’m looking forward to this second chance to fix past mistakes and live as God wants me to. And to never, ever, fear anything in the world again – other than God.

What do you like least about your brain injury?

I dislike needing way too much sleep and always being tired no matter what I do or don’t do. I don’t like figuring out my new altered personality, my future career, and even my likes and dislikes. I don’t like having to relearn every advanced physical maneuver and regaining my previous mental processing speed and volume capacity.

Has anything helped you to accept your brain injury?

I have been greatly helped by my undying (and now bulletproof) faith in Jesus Christ; by my eldest son, who is bipolar (now I want him scanned for an AVM too) and is the only one in my family who understands my continuing emotional turmoil; and by the support of my close friends in Christ and by my BFF of 45 years.

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

I look, speak, and act “fine,” so family (except my eldest son) and others don’t really understand my continuing emotional turmoil and new personality. So, I keep my inner feelings mostly to myself (and to my BFF, to my eldest son, to my bible study group, and to my therapist).

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

I was kind of a homebody before, so my social life is not much different. But, busy, noisy places, like crowded restaurants, create a sensory overload that can become overwhelming, especially after high-stress or high-volume days. It’s like I can hear every individual sound of 100 people, intercoms, TVs, and devices all blaring at once. I just want to scream, “Will everyone please just shut the f#@k up!?”

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

I’m so undeservedly blessed that I don’t have or need a caregiver anymore. My wife had to do it for the first few months after I moved back home, but I’ve been mostly on my own since then. My “emotional caregivers” are probably my BFF, my eldest son, my bible study group, and my therapist.

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

I can’t tolerate the blatant dishonesty and BS involved in practicing law anymore (especially litigation, where it’s the worst) – not my own, but that of others who simply “double down” when I catch them and call them out. Far too many “judges” seem even worse than the lawyers. My BFF and I have done construction rehab work, and we just launched a demolition and construction company. In ten years, I hope it will be my main source of oncome, with my eldest son working with us and me taking only select legal work “on the side” (which sounds like Heaven). I wrote a book on God’s miracles in my experience. I hope to write more and to speak to inspire and help others overcome their crises and follow Jesus Christ.

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.

Don’t try to force yourself back into who you were; you simply aren’t that person anymore and never will be again. I always say that as well as I’m doing now, “everything is different” somehow. Embrace who you’ve become and the power your experience and resilience have given you to overcome any obstacle. And, help others do the same.

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

Thank God constantly for every breath you take; every blessing you have; and even every challenge, setback, and outright sorrow you experience. All these things work together to achieve God’s will to make you stronger and better as the person He wants you to be. And never, ever, sweat the “small stuff” again – life’s just too short.

 

With all God’s blessings to all survivors everywhere,

Steven A. Marderosian

 

Survivors SPEAK OUT! Courtney Clark

Survivors SPEAK OUT! Courtney Clark

presented by

Donna O’Donnell Figurski

 

Courtney Clark Photo 2

Courtney Clark – survivor of Brain Injury & Motivational Speaker

 

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

Courtney Clark

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

Austin, Texas, USA

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

In the spring of 2011, at age 31, I discovered I had an AVM (arteriovenous malformation).

4. How did your brain injury occur?

An AVM is a congenital birth defect of the blood vessels. I actually had no symptoms and no warning signs, but I had been living with it for 31 years when doctors found it.

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

My oncologist actually found my AVM at my 5-year cancer-free scans! Because I didn’t have any symptoms (usually symptoms are headaches and seizures), I had no idea that I had it. I also learned that three aneurysms were within the AVM. Any one could have ruptured at any time.brain-20clip-20art-brain4

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

I flew to New York to be seen by one of the top neurosurgeons I could find. I had three brain surgeries.

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

I wasn’t in a coma. I woke up from surgery the first day, but I struggled with consciousness for almost two weeks.

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

I didn’t have to do rehab, but I did have to teach myself how to read again over the course of about a month because I really struggled with comprehension.

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

visionThe main issues I struggled with right away were visual issues. I had a problem with depth perception, and, because of that, I couldn’t walk for several days – I could only walk a few steps at a time. For the next several months, I also had to work on reading and anything else that required visual comprehension.

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

My life the first year was painful. I was running a small nonprofit out of my home, and I found that I could barely stay awake long enough to do any work. I felt completely helpless. (I couldn’t even take myself to the bathroom.) Now, I’d say my overall life is better – going through this with a supportive husband by my side has shown me I chose the right partner (the second time around). Also, I have even more perspective on life.

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

Yoga! I am NOT a natural athlete like everyone in my family. But, in yoga, I had mastered the headstand. I could do not one but two cool headstands! I felt like a rock-star athlete for the first time in my life! When my neurosurgeon told me that I could no longer do Yoga th-1headstands (it sounds obvious now but caught me completely off guard at the time), it was the first time I really, truly wept. Like, I’ve been through so much, and now I can’t even do this ONE THING that brings me so much joy and makes me feel like a beast!

In a larger sense, I also miss that feeling of immortality that we all have when we’re young – when we think nothing bad could ever happen to us.

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

I’m so much more appreciative of my husband, my loved ones, and my life! Because of everything I’ve been through, I now get to research, write, and speak on resilience, and I love traveling the world to get to help other people.

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

These days, nothing!

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

One of the main things that helped me was volunteering and giving back to other people. (It’s a strategy I ALWAYS use to help me when I’m struggling with something.) Research shows that volunteering is one of the best ways to get perspective on our struggles.

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

My relationship with my husband, Jamie, has been affected – because I feel 100% certain that I’ve chosen the right life-partner. When I was diagnosed with cancer at 26, my then-husband wasn’t as supportive as I would have liked. The push in the direction to end my marriage was painful, but necessary. Jamie, my second husband, and I hadn’t even been married a year when the AVM was found. I was so worried that having to take care of me – take me to the bathroom, etc. – was going to hurt our new marriage. But, Jamie was, and continues to be, a most-supportive, caring partner.

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

I feel very lucky – I didn’t have any long-term changes to my social life. Short-term, yes; but long term, not really. I will say that, after my surgeries, I have a “life is short” feeling – I don’t put up with a lot of BS or unkindness from friends.

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

Image result for Free Cartoon Clip Art love life

My husband was my main caregiver. I don’t know if anyone can totally “get it” until he or she has been through it, but I always say that in some ways it’s almost harder to be the loved one than the patient. It was especially difficult for Jamie to deal with me because I had experienced the world of cancer also! Jamie didn’t always get to be the one to choose the treatment plan, but he had to just go along with whatever I chose. And, I got wheeled away, and I slept through the 10-hour surgery, but my husband was awake, pacing the floor the whole time!

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

Ten years from now, I want to continue traveling and speaking to groups to help them gain resilience and handle change and challenge.

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.

My biggest helpful hint is that helping someone else is a tool that EVERYONE can use. So often, we think that, if we’re struggling, we have nothing to give. And, we may feel drained, exhausted, or like “Why do I need to help somebody else? I’m still getting help?” or “How could I even help someone, with my life the way that it is?” But, giving doesn’t have to be directed downward – to someone less fortunate. When I was sick the first time, I kept up with my volunteer activities, and I found that it gave me a sense of personal power and accomplishment, even when I didn’t feel like I was accomplishing much in my everyday life.

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

My best advice is that healing and recovering from a brain injury isn’t a linear process. Before your brain injury, maybe you were like me: go-go-go, getting everything done, climbing the ladder, all about success. You can’t just “bounce back” after something like this. It’s a long, slow trudge, which our society doesn’t glamorize. But, the slow journey is really the only option, and that’s not all bad. It’s an opportunity to reprioritize and savor the smaller things (which I used to ignore).

 

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Courtney Clark – Survivor of Brain Injury – will be Keynote Speaker – BIAAZ Rays of Hope Conference – May 17, 2019, Phoenix, Arizona

 

Learn more about Courtney Clark on her website, Courtney Clark – Accelerated Resilience.

(Clip Art compliments of Bing.)

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