TBI – Survivors, Caregivers, Family, and Friends

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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!!”

Get Your Copy Now

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Click Links under Book

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Stay Safe and Healthy!

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Indie Spotlight – Donna O’Donnell Figurski

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

donna o’donnell figurski – author

Prisoners (print) Amazon US Paperback
Prisoners (eBook) Amazon US eBook
Prisoners (audiobook) Amazon Audiobook
Prisoners (print) Barnes and Noble Paperback
Prisoners (eBook) Barnes and Noble eBook
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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.

Don’t Forget to Get Your Copy of My Book Now!

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COVID-19: Vaccines ………….. Part 1 of 3: If Enough Get Vaccinated, Society Can Return to Normal

COVID-19: Vaccines Part 1 of 3: If Enough Get Vaccinated, Society Can Return to Normal

by
Columbia University Professor Emeritus, Dr. David Figurski

presented by

Donna O’Donnell Figurski

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

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

Vaccination is happening on a large scale in the US. President Biden has said that all adults can be vaccinated by the end of May.

Amazingly, in one year, three vaccines have been approved by the FDA (Food and Drug Administration). A fourth is ready, and more are close to finishing their clinical trials.

Why get vaccinated? 

Everybody knows that you will protect yourself from serious disease, so there will no longer be the risk of hospitalization and/or death.

The amount of virus in the body will be lower (and sooner at zero), so you are less likely to infect a sensitive person.

And there is a major benefit to everyone – most people don’t consider this.

Some people are irrationally worried about the vaccines and will not get vaccinated. This is a problem because vaccination is not just a personal decision. The entire population – vaccinated and unvaccinated – is adversely affected.  Let me explain.

When 70-80% of the people become immune, the pandemic will be defeated. (The virus will still be around because the 20-30% who are not immune will allow the virus to stay with us – but in lower amounts.  The 70-80% number comes from virologists (including Dr. Fauci) who understand that the population achieves “herd immunity” at that level.  Herd immunity will allow us to get back to normal – no lockdowns or self-quarantining, no avoiding contact with other people, no social-distancing, and no masks.

So if we want to get back to normal, we need to achieve herd immunity.

There are two ways to become immune – (1) infection with the virus and (2) vaccination.  Infection is iffy and dangerous.  Vaccination is guaranteed.

The former President was sometimes influenced by Scott Atlas – a notoriously incompetent COVID-19 Task Force member. Atlas was convinced that the best way to achieve herd immunity was to let everybody get infected.  The first problem is the number of deaths that policy would cause. (At a death rate of 1%, infection of the 330 million people in the American population would lead to 3.3 million deaths.) The second problem is that some infections (probably some of the asymptomatic infections) lead to poor immunity that’s not protective.  We know that some individuals who have recovered from COVID-19 have no antibodies to the virus. (The “innate” immune system – our first line of defense – was probably good enough.)

Vaccination is guaranteed to provide protective immunity.  FDA approval is based on a vaccine’s protective effect in the clinical trial.  (The Phase III clinical trial involves ~30,000 people.)

A decision to be vaccinated benefits not only you, but also everyone.  

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Prisoners without Bars: A Caregiver’s Tale

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COVID-19: The President’s Infection (Part 3 of 4)

COVID-19: The President’s Infection (Part 3 of 4)

by

Columbia University Professor Emeritus, Dr. David Figurski

presented by

Donna O’Donnell Figurski

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

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

The President was given two anti-COVID-19 drugs – the antiviral, remdesivir, which was used in the ultimately controlled Ebola pandemic and which was recently found to work on coronaviruses, and Regeneron’s experimental mixture of two monoclonal antibodies.

Remdesivir was found to inhibit the virus-encoded molecular machine that copies the chromosome of coronavirus to make more virus. Because it blocks virus multiplication, remdesivir shortens a hospital stay by 3-4 days.

Working with chimpanzees, Dr. Susan Weiss showed that remdesivir works best when given early in the infection when most viral multiplication takes place. This is impractical in humans because they don’t have symptoms for several days following infection.

Regeneron is developing a drug that seems to be effective against COVID-19, as suggested by a small clinical study. It is a mixture of two monoclonal antibodies.

When an individual gets infected with COVID-19, that individual makes a number of antibodies that bind the virus. There are many antibodies, but each one is produced by a single cellular clone (a cell and its descendants). Some of these antibodies are “neutralizing” antibodies, which inactivate the virus or block its ability to bind to a cell to start an infection. Such a diverse antibody response is said to be “polyclonal.” In 1984, César Milstein was awarded a Nobel Prize for developing a way to isolate a single-antibody-producing cell. As expected, its clone only produced one type of antibody. The antibody produced by such a cell line is a “monoclonal antibody.”

Regeneron’s scientists identified two COVID-19-neutralizing antibodies in people that recovered from a severe COVID-19 infection. They isolated the cell clones that produced them and put them into specially engineered mice so they could produce more of each antibody. The President was given this experimental drug because the Food and Drug Administration issued a Compassionate Use authorization.See the source image

(Irrelevant fact: I know Dr. George Yancopoulis, who founded Regeneron and is now its Director and Chief Scientist. He earned both an M.D. and a Ph.D. at Columbia University while I was a professor there. He worked on his Ph.D. in the laboratory of Nobel Laureate Richard Axel, whose lab was a few floors below mine.)

The President was also given vitamin D, zinc, and melatonin. Vitamin D helps prevent infection. It is a preventative and not a therapeutic agent. Zinc is also thought to prevent infection, but there are no convincing studies on zinc. Melatonin was given as a sleep aid.

(To Be Continued)

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Past Blast – SPEAK OUT! Survivor Interview … Ann Boriskie

Past Blast!

Survivors SPEAK OUT! Ann Boriskie

presented

by

Donna O’Donnell Figurski

 

Boriskie, Ann Survivor 011116

Ann Boriskie – Survivor: Brain Injury Peer Visitor Association Director

 

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

Ann Boriskie

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

Alpharetta, Georgia, USA (a suburb of Atlanta, Georgia) aboriskie@braininjurypeervisitor.org

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

November 12, 1998, at age 48

4. How did your brain injury occur?

My brain injury occurred in a car wreck less than five miles from home. I was headed to a regular dental checkup.

A woman was talking on her phone while driving, and she obviously missed her turn. She stopped suddenly, but I was able to stop my car and not hit her at all. She just sat there at the bottom of a hill on the two-lane road. She did not move. A young student (16 years old) came down the hill. He said he was messing with his radio and just did not see us. He hit my car going 50 mph and pushed my car into the woman’s car.

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

About 48 hours after my wreck, I started having concussion symptoms. I experienced dizziness and mental “fogginess.” I could not walk. There was bruising under my eyes. The toes on my right foot went numb. My left eye was out of focus.

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

None. I walked away from the wreck thinking I was just fine. After 48 hours, I went to a 24-hour clinic, but they just sent me home. They told me I had no real problems and I would be fine. I also went to an eye doctor right away, but again, I was told there that nothing was wrong physically with my eye. Several months after my wreck, one neurologist told me that I had “post-concussion syndrome” and to go home – that I would be just fine. No one else mentioned my having a brain injury for one year. Then a dental TMJ specialist told me that I had a brain injury. That was what was causing my mental symptoms. (TMJ = temporomandibular joint)Peer Visitation Banner

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?

My brain injury went undiagnosed for over a year. The physical therapy that I received was in relation to each of my physical injuries (see #9), especially to help after the surgeries that I had to have to repair the parts of my body that were injured.

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

a. My brain injury caused depression, anxiety, and anger (more so in the first several years). I had lots of memory issues. (I could not remember friends or faces. I got lost. I could not write. Then once I could write, I couldn’t write in cursive – I still can’t.) Some memory issues remain today. I permanently lost many of my past memories. (I can’t remember family events or experiences or places where we had lived. I lost memory of cities and our time there.) I lost a lot of my math skills (I was an A+ math student, and I was in advanced math classes), but I have regained many of these math skills.

b. My neck was injured. (The C4, C5, C6, and C7 vertebrae were knocked out of line.) I had to have neck surgery (for fusion and a metal plate holding these four levels together). My neck is in CONSTANT PAIN.

c. I had an injury to the L5 and S1 levels of my spine. (The last two vertebrae are not attached now to my spinal cord). Surgery was recommended, but my neck did not fuse properly, so I decided not to have back surgery. I am in CONSTANT PAIN in my lower back. The pain often radiates to my hips and legs.

d. I popped a tendon from its bone in my right elbow. (I braced my body on the steering wheel in the wreck.) It required surgery. The doctor said it was one of the worst tears he had ever seen.

e. Permanent nerve damage was created in various body areas.

f. The left part of my jaw was knocked out of line. It literally took years of appliance therapy to get the bone back into its correct place.

g. A valve was torn on the left side of my heart. This caused irregular heartbeats for a while. It repaired itself.

h. My left side remains weaker than my right side.

i. Numbness remains in my hands (which makes it harder to use my hands). I also have numbness in my feet, down my arms, and down my legs.

j. Sometimes my left eye will not focus or work well with my right eye.

k. I have a shorter attention span.

l. All of these physical injuries caused me to have fibromyalgia and constant body pains.

Boriskie, Ann Podium

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

In the long run, I have to say my life is truly better. All three of our children are in the medical field. (My husband and I have raised one daughter, now a neonatologist who takes care of premature babies and helps the moms; raised a son, now a doctor of internal medicine who works as a hospitalist; and raised another daughter, now a Registered Nurse in a mental-illness hospital unit.)

My priorities changed in my life. I went from being a “work-oholic” and a person who was very competitive to a person who lives to help other people, including my family and friends.

I slowed down my life’s pace. I had to learn that I could no longer work at a full-time outside-the-home job. (For years, I could not work at all.) I also had to learn to take care of myself – due to all of the physical and mental problems that the wreck created.

I was at home, and thus I was “there” more for my children and husband. I was able to give them more help and more attention.

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

I miss my higher energy level. I miss many of my memories. I miss all of the physical sports and activities that I can no longer do (water skiing, snow skiing, kayaking, swimming, playing golf, etc.).

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

I enjoy running the Brain Injury Peer Visitor Association and being able to help thousands of brain-injury and stroke survivors throughout the United States and the world. I’ve done this each year since 2006.

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

I dislike being in constant pain (which also affects my brain). I also dislike having to push myself more and having to work much harder to accomplish my goals and to do my work than I did prior to my wreck.

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

  1. Helping other people helps me also.
  2. Sharing my experiences with others and listening to each brain-injury survivor’s problems (This helps me to better understand my own brain injury.)
  3. Attending support-groups (and being very open to sharing my own problems, experiences, successes, and methodologies)
  4. In the past, gaining the help of neuropsychologists
  5. Going to medical doctors who treat brain injury (e.g., a psychiatrist)

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

Yes. I am much more dedicated to my husband and three children. I treasure our relationships. I also treasure my friendships more. You really better understand that life is way too short and can change in a second.

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

Yes. I no longer like to be in big crowds or in a noisy environment. Going to a party is now a struggle and sometimes a chore. I just avoid noisy places and huge crowds. This requirement definitely limits the activities in which I can participate.

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

My wonderful husband is my main caregiver. I am blessed that he “stuck it out” with me and helped me go through all of my physical and mental recoveries. He is also one of my biggest supporters – even financially supporting my association and approving of all of the volunteer hours that I dedicate to the Brain Injury Peer Visitor Association.

Boriskie, Ann Training in Florida Survivor 011116

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

I plan to continue running the Brain Injury Peer Visitor Association as long as I possibly can. My dream is to continue to grow the association throughout the United States and even internationally.

I also plan to continue to enjoy and spend time with my immediate family and their families.

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.

Accept your limitations, but continue to “push yourself” to improve. Realize that, even though you are different from the pre-TBI you, you are still a valuable person in the world. Let your “old self” go. Realize that person won’t be back. Embrace the “new you,” and learn to love yourself for who you now are. Remember that YOU CAN. Don’t defeat yourself by focusing on all of the things you can no longer do.

2011 Community Service Awards from WXIA 11

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

Help others. Get involved. Volunteer. By helping others with a brain injury, you truly help yourself in so many ways. You will help yourself get better, and you will gain confidence.

 

You can hear Ann Boriskie on my radio show, “Another Fork in the Road” at 5:30pm PT (6:30MT, 7:30CT, 8:30ET) on Sunday, January 17th on the Brain Injury Radio Network (BIRN)

Click here on Sunday 5:30pm Pacific Time. Another Fork in the Road: Ann Boriskie – Director of Brain Injury Peer Visitor 

You can call in to listen to the show or talk to the host by dialing this number. 424-243-9540

(Disclaimer: The views or opinions in this post are solely that of the interviewee.)

If you would like to be a part of the SPEAK OUT! project, please go to TBI Survivor Interview Questionnaire for a copy of the questions and the release form.

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New NEWS: . . . . . . . . . Exponential Spread of Coronavirus – Learn About It

Dr. David Figurski Speaks Out about the Exponential Spread of Coronavirus

Learn About It

presented by

Donna O’Donnell Figurski

David Columbia Award May 2017

David H. Figurski  Professor Emeritus of Columbia University  Microbiology and Immunology

Why are the WHO, scientists, and some leaders really worried about this pandemic? Why has society been asked to basically shutdown? Why has the governor of California predicted that half of the State will be infected with the new coronavirus?

… because viruses spread exponentially throughout a population.

Exponential spread is a concept that is not intuitive to humans. Here is an easy-to-understand illustration of the explosive power of an exponential function.

Start with $0.01. Then double the amount every day. (You will have $0.02 on day 2, $0.04 on day 3, $0.08 on day 4, etc.) Continue doing this every day for a month (30 days). It’s an piggy-bank-png-clip-art-image-5a1ca3f171b701.9718908215118264174658-1exponential function because every day you double the amount of the previous day (i.e., in this case, you multiply by 2) to get a new amount.

Watch how exponential growth leads to an explosion in the amount.

On day 1, you start with $0.01.1
On day 7, you will have $0.64
On day 14, you will have $81.92
On day 21, you will have $10,485.76
On day 28, you will have $1,342,177.28
On day 30, you will have $5,368,709.12

The number of coronavirus infections in the US is about to explode! The US pandemic is like about day 14 of the example. Some people are still thinking, “No big deal.” They have no idea of what’s about to happen.

A friend sent a link to me of a video that explains exponential growth in simple, very easy to understand math. Have a look. I highly recommend it. (How is Covid-19 Growing?)

People are totally wrong to be complacent about this pandemic. There have been relatively few confirmed cases, so some people are thinking we’ve got this licked. They’re wrong for two reasons. (1) The US was unprepared for this outbreak. Few (except the very sick and some celebrities) have been tested because the US had an insufficient number of test kits. So, it’s an illusion that we are seeing so few people with the virus. (2) They don’t understand the concept of the immense power of exponential spread.Growth_Bar_Graph

The primary reason people are alarmed by the number of infections is the high death rate of people who have been infected. As of this writing, deaths are 11,402 worldwide, while cases are said to be 276,104 (WorldoMeters). Calculated death rates have ranged from 1.4% (the latest, from Wuhan) to 4%.

There are 39 million people in California, and the governor has predicted that about half (19.5 million) will be infected with coronavirus. About 18% of infections are Virus and infection, image illustrationasymptomatic (about 3,500,000 in this scenario). Since the death rate is calculated with symptomatic infections (predicted to be 16 million), the lowest death rate (1.4%) gives 224,000 deaths in Calif. if the governor’s prediction is accurate.

 

David H. Figurski, Ph.D – Molecular Biologist

Columbia University Professor Emeritus

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Brain Injury Resources . . . . . . The Resilient Soul by Karen Leavitt

Brain Injury Ressources

The Resilient Soul by Karen Leavitt

reviewed by

Donna O’Donnell Figurski

 

I am so proud to be an author of a chapter, “Living Nightmare – TBI” in “The Resilient Soul” by Karen Leavitt.

This book shares poignant stories of folks meeting and surmounting their struggles as they face life’s hardships. We are all resilient souls.

 

The Resilient Soul” offers hope and encouragement.

Donna O’Donnell Figurski
author of “Prisoners without Bars: A Caregiver’s Tale”
donnafigurski.com

Learn more here.

SPEAK OUT! Are You Kidding Me?

As I say after each post:

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

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Survivors SPEAK OUT! Rod

Survivors SPEAK OUT! . . . Rod

presented

by Donna O’Donnell Figurski

 

Rodney Rod Rawls Survivor 1

Rod – Brain Injury Survivor

 

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

Rod

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

Coeur d’Alene, Idaho, USA

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

April 1, 2016 at age 56

4. How did your brain injury occur?

A motorcycle crash – I wasn’t wearing a helmet, and my head impacted the asphalt when I went over.motrocycle

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

A passing driver called emergency services.

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

I was diagnosed as “brain dead” on arrival at the emergency room. I was placed on life-support, and my family was told they’d keep me on it for 24 to 48 hours.

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

About three and a half hours after I was diagnosed as brain dead, my autonomic functions sparked back up. I was comatose for about six more hours before regaining consciousness.

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 an outpatient for my therapy. I started with speech therapy to address my issues with communication. After two years, my doctor recommended the nearby clinic of a neuroscience institute, where I received occupational therapy and physical therapy. Occupational therapy helped me develop tools and approaches to reduce the negative impact of many of my new disabilities. During my physical therapy, I was able to use a DynaVision system (a light-training reaction device, developed to train sensory motor integration) to help redevelop my visual coordination and improve my balance issues while walking.

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

Rodney Rod Rawls Survivor 3

Rod – Brain Injury Survivor

• Sleep was my first battleground. Mental fatigue after poor sleep could make me completely dysfunctional – for example, unable to form sentences. I also had no buffer for raw emotions. They could make me cry or become angry with no warning and often for no obvious reason.

• Poor balance made me worry that people would think I was drinking. Therapy and a trekking (hiking) pole made a big difference for me. I’m able to go without the trekking pole most days now.

• My light-sensitivity has decreased over these last three years, but I still get overwhelmed all too often from the sounds in a restaurant or any room with multiple conversations taking place.

• My girlfriend calls me “Rod 2.0” because I’m so different. So, yes, my personality definitely changed. I used to watch TV and play video games every day; now I can’t do either one. Instead, I enjoy gardening, painting, sewing, cooking, and crafting – essentially any activity where I am creating something.

• I can no longer do math that has any complexity, and I struggle to read. I am so thankful for audiobooks!

• I’ve lost what I estimate to be upwards of 90% of my long-term memory.

• My short-term and working memory are both very unreliable now.

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

My life is different, that’s all. I am a new person whose long-term memory loss means I carry very little baggage with me. My struggles have changed, but, from the stories I hear about how I was before, my quality of life has most certainly improved.

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

It would be nice to remember things when I try to, but, since I’ve lost most of my long-term memory, I don’t really know what I might be missing otherwise.

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

I enjoy the “in-the-moment” nature of my life as it is now. Mindfulness meditation was so easy for me to learn because it’s how my mind works now. At any given moment, I’d have to work hard to remember what I was doing five minutes ago, and I’m rarely certain of what I’ll be doing five minutes from now, but I am always aware of so much that is happening right now. This is likely a contributor to my high level of sensitivity to chaotic environments.

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

Perhaps it’s the varying judgements I experience. Some seem to think I’m not as bad as I let on. Some express a little too much sympathy or “understanding.” Some base their view of me on my highest-performing moments, so they think I somehow plan when to be dysfunctional. This last one is the hardest, and it comes from those closest to me.

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

I went from being a caregiver for my son when he returned from the military with a TBI (traumatic brain injury) to becoming a TBI-survivor. Without question, he’s the one who has had the most impact on me in this area. My girlfriend is as patient as I could ever hope for – enduring my personality change and my sometimes-volatile emotions. You feel like you can be more normal when someone treats you as though you actually are normal.

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

Getting things done is a huge challenge. The number of uninitiated and half-finished tasks around my home seem to increase over time. I have good spurts when I get one of them done, but ever more are piling up.

Relationships have changed much… I could write a couple of pages on this.

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

I don’t socialize at all any more. I am a caregiver for a mother with dementia, so my time is limited. I spend some time each week with my girlfriend, but that’s about the limit of my socializing.

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

I am my own caregiver. I give special recognition to those in my life who are as patient as they can be with me. I was a caregiver for my son when he came home with his TBI. Back then, I was supportive and non-judgmental, and he’s that way with me now. Through my experience, I realize that I couldn’t come close to understanding what was happening in his mind when I was his caregiver. I think that’s something that only becomes completely clear if you have to go there also.

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

vegetable-garden-vector-id165638080.jpgTen years from now, I’ll be retired – with a dog by my side and, if all goes well, some chickens, and perhaps even goats, to tend. I hope to garden much and preserve enough each year to fill my pantry and to share with others, to cook, and to work in my shop and become better at crafting.

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 suggest you …

  1. … write things down.

I keep multiple dry-erase whiteboards at work and at home to keep track of things. When you schedule your doctor appointment, start your list of questions immediately, and keep it somewhere obvious so you can’t miss it when it’s time to go. (I use a list app on my phone, so I know I’ll have it when I go.)

  1. … be as patient as you can with those around you.

Unless they’ve experienced a TBI, they really can’t understand your struggles.

  1. … set rules with those who you spend time with.

For example, being able to say, “I need some time alone” and being able to find a quiet place without anyone taking it personally, asking after you, or chasing you down. (The latter was a big one for me. I often just need to escape for a short time.)

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

Rodney Rod Rawls Survivor 2

Rod – Survivors of Brain Injury

Develop tools that work for you. I highly recommend doing occupational therapy. That’s where I learned to identify the issues that plague me the most and got solid advice on how to develop tools and strategies that make a difference in my life on a daily basis.

Learn how to eat properly to facilitate your recovery and to support your mental function in the long term.

Work with a trusted medical professional to develop the supplement regimen that is best for you.

Meditate. The single greatest impact on my recovery has come from developing a daily meditation practice. I encourage all brain injury survivors to explore meditation. Meditation is a simple and easy-to-learn practice that has been shown to make physical changes to the brain, and it has greatly helped many brain injury survivors.

 

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SPEAK OUT! Itty-Bitty GIANT Steps

SPEAK OUT! Itty-Bitty GIANT Steps – Nolan McDonnell

presented by

Donna O’Donnell Figurski

Itty-Bitty GIant Steps for Blog

 

 

SPEAK OUT! Itty-Bitty Giant Steps will provide a venue for brain-injury survivors and caregivers to shout out their accomplishments of the week.

If you have an Itty-Bitty Giant Step and you would like to share it, just send an email to me at donnaodonnellfigurski@gmail.com.

If you are on Facebook, you can simply send a Private Message to me. It need only be a sentence or two. I’ll gather the accomplishments and post them with your name on my blog approximately once a week. (If you do not want your last name to be posted, please tell me in your email or Private Message.)

I hope we have millions of Itty-Bitty Giant Steps.

Nolan McDonnell

 

Nolan McDonnell (survivor) … It might sound small, but I buckled up myself in the wheelchair van for my first time tonight. :

Wheelchair VanMan in wheelchair

 

 

You can learn more about Nolan McDonnell at his website:

Coach Nolan

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

As I say after each post:

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

Feel free to follow my blog. Click on “Follow” on the upper right sidebar.anim0014-1_e0-1

If you like my blog, share it intact with your friends. It’s easy! Click the “Share” buttons below.

 

 

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