TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘Brain Awareness’

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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(Photos compliments of contributor.)

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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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(Photos compliments of contributor.)

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TBI Tales . . . . . . . . . . . . . . . . . They Meant Well, But I Knew Better

They Meant Well, But I Knew Better

by

David Figurski

presented by

Donna O’Donnell Figurski

 

David Figurski, PhD Brain Injury Survivor

 

 

Close friends of Donna and me, with whom we have a deep mutual affection, thought I needed some advice on my ongoing recovery from my traumatic brain injury (TBI). I know our friends care about me, so their words were well-meaning – but I have to admit their comments stung quite a bit. I’m sure they didn’t want to upset me. They think they know me, but, in ignoring my nearly compulsive commitment to getting better, they got me totally wrong. They also had no idea that what they thought to be helpful advice was completely unwarranted because it was based on my own deliberately artificial impression. Let me explain.

Our friends’ advice did not come from an ignorance of brain injury, as their daughter had a nearly lethal brain-bleed eight years ago. The daughter and I are both fortunate to have fully retained our cognitive functions, but we both exhibit physical disabilities. Some of her problems are similar to mine. The advice actually began with the daughter describing some positive experiences that led to a lessening of her disabilities – but then the discussion turned into advice for me.

One piece of advice that disturbed me was that our friends and their daughter think I don’t challenge myself enough. I don’t regard myself as a slacker, nor has anyone ever referred to me as one. Here’s where they got me wrong: I always try to do better at whatever I’m doing. In fact, it was my challenging myself that caused my brain hemorrhage in the first place. Every morning, I did tai chi and chin-ups. I had worked up to twelve chin-ups. The next day, my attempt to do thirteen caused my cerebellum to bleed and put me into a coma.

After surviving my TBI fifteen years ago, I continued to push myself as hard as I did before my TBI to improve in the shortest possible time. I currently do exercises to improve my balance, build strength, and help my eye muscles (I see double) six days a week. Three of those days, I also ride my recumbent trike (15 miles each time I ride – about two hours). On two of the non-riding days, I use the treadmill for 45 minutes. (I was riding 25 miles a day and using the treadmill for 60 minutes, but Donna worried I was pushing too hard and talked me down.) By the time I get ready, do my workout, and then shower and get dressed, six or seven hours have elapsed. My normal day begins after 2:00, sometimes after 3:00.

IMG_2935

David exercising on his Catrike recumbent trike (and showing off my book, Prisoners without Bars: A Caregiver’s Tale)

I keep my weight down, and I work constantly to improve my posture because I know that both weight and posture affect balance. Also, to improve my brain’s ability to control my balance, I try not to brace myself with my hands. Even when I appear to be sitting calmly, I’m likely to be working. The brain hemorrhage affected the tendons in my neck, and my head tilts. To keep it straight, I have to work against my tendons. Hopefully, this will get easier, but it will take more years.

Our friends don’t really know any of this about me.

 

David Alinker IMG_4470

David exercising on his Alinker

 

 

When the father assists me outside, he deliberately increases the challenge to me. I do it, and would never say I can’t (My self-esteem has already taken a big hit), but I know I couldn’t maintain that effort indefinitely. (On the other hand, Donna is an incredible help to me. She knows when to assist me to make my life possible and when to challenge me.)

I think the father assumes that I can improve my balance like his daughter did. What he doesn’t realize is that my hemorrhage began in my cerebellum, which controls my balance. So, my brain’s mechanism for controlling balance has been disrupted. His daughter doesn’t have my severe balance problem, so her brain’s mechanism for controlling balance appears to be functioning. Her problem may have been a signaling issue.

It was surprising to hear that kind of advice from the daughter. We are fond of each other, and we have mutual empathy. It’s clear that the differences in our disabilities indicate an obvious fact: that different parts of our brains are affected. Thankfully, she doesn’t have all the problems I have. (For example, her vision is fine, and she is able to drive.) Her balance was affected, but fortunately, she can walk outside, including on grass, dirt, sand, or gravel. In contrast, my balance issue makes it impossible for me to walk unassisted anywhere outside, even on sidewalks because of their slight irregularities.

I am immensely thankful that that the daughter has none of the other problems that I have – double vision (which I mentioned), less feeling in my right leg, a swallow problem, a less coordinated tongue that makes chewing hazardous, a urinary frequency problem, extreme difficulty standing after sitting a while, an ataxic right arm, left hand and fingers that aren’t as good as they used to be, and paralysis on the right side of my face. I used to race cars, but now I can’t drive at all.

The daughter said her balance was improved rapidly by allowing herself to fall and learning the point at which that would happen. I do that when I’m near the bed, where I know I can fall safely. I’m reminded of race drivers who learned the limit of a turn by driving so fast that they would go off the course. That is one strategy for learning, but I chose another: to drive to the point I was scared I wouldn’t keep the car on the track. I learned that, even though it was scary, I was able to drive through the turn faster than I used to. (Incidentally, I was rarely passed by a driver from the other group.) Falling worked for the daughter, but it’s not the only way to improve. I use another, equally effective, method.

My second point illustrates another reason why our friends’ advice was incorrect: What I allow our friends to see does not reflect my life at all. Their error was to assume that it does.

Donna constantly offers to help me, and she doesn’t like to see me struggle. We discussed how I need to do things myself. My efforts take much longer than they did before my TBI, but doing them myself is good for my recovery and my self-esteem. Donna has since achieved a nice balance. She reluctantly lets me struggle and only assists when I ask for help.

At home, I do whatever I can physically, including making the bed every morning, doing the laundry, cleaning up after dinner every night, and loading and unloading the dishwasher. In fact, every movement I make is excellent therapy.

When we visit friends or when we go to parties, people see a very different version of me. I use a cane and take small steps to ensure I walk in a straight line and don’t bump the walls. Our friends would freak out if I they saw me pushing the envelope like I do at home! I let Donna help me or do things for me, not because I want her to wait on me, but because my instability would upset people and make them feel uncomfortable. Our friends are concerned because they constantly see me accepting Donna’s help.

They feel I’m not where I should be. They have erroneously assumed that I don’t work hard enough to improve myself. Their advice, while well-intentioned, is totally wrong. Given that I spend several hours each day working out, given that I believe everything I do is therapy and helps my recovery, and given that I accept Donna’s help to protect our friends from seeing my instability whenever I’m in their presence, “insufficient challenge” is an entirely misguided and utterly inappropriate concept to apply to me.

I would argue that, with all my disabilities, I’m actually doing much better than expected.

David Figurski, Ph.D.           Brain Injury Survivor of 15 years

David &amp; Donna Dec 2019 Lupitas

Donna O’Donnell Figurski and David Figurski – 15 years post-Brain Injury for David

(Photos compliments of contributor.)

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Survivors SPEAK OUT! . . . Alisa Marie

Survivors SPEAK OUT! . . . Alisa Marie

presented

by Donna O’Donnell Figurski

Survivor of Brain Injury
Alisa Marie

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

Alisa Marie

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

New Hampshire, USA

Truecolorsartist@gmail.com

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

October and November 2012

But, my very first concussion was in 1998. I was 30 years old. 

4. How did your brain injury occur?

tenor

The event in October 2012 was a fall caused by vertigo. In November 2012, I was cleaning under the pool deck. I went to get up and banged my head, causing me to be knocked out. I don’t remember what happened in 1998.

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

My boyfriend at the time found me unconscious under the pool deck.

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

I was taken to the Emergency Room, and I had rehab. I had to live with my parents for a while because they had to take care of me. I thought it was the year 2005 and my children were 5 and 10, but it was 2012 and they were 13 and 18. Also, I was going through a divorce, and my house was in foreclosure.

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)?

I had occupational and physical therapies as an outpatient and speech therapy both as an outpatient and as an inpatient.

How long were you in rehab?

I’m not sure because I’ve been in a lot of rehabs for head injuries. I was in three in 2015. My last rehab was in 2018, as my last concussion was in 2017. (I slipped on clothes on my floor because my perception was off.)

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

I struggle with many issues: balance, perception, personality, cognitive and executive functioning, memory, staying on task, aphasia, and impulsivity. It’s hard to make decisions and hard to be organized. I lost my independence. I lost my license for cognitive reasons back in December 2013.

Alisa Marie – Brain Injury Survivor

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

I’m an artist, designer, and poet. I am also trying to have my own business, Alisa’s True Colors. I began melting Crayola crayons in 2013 when Emily, my younger daughter, showed me how to apply wax to canvas using a blow dryer and a fork.

This was helping me as art therapy, where I could take physical and emotional pain and turn it into something colorful and bright. It was all I could focus on for a while. I didn’t know it then, but the seeds of Alisa’s True Colors were being planted. It helped me learn and adapt to the new me. I was creating my ability out of my disability.

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

Freedom and independence

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

I have come to realize that we hold within ourselves the power to heal. I have learned we don’t need a superhero to save us; we need to be our own hero in our own story. We need not to be afraid to chase after our dreams. And, if one door closes keep looking for the open ones.

I am learning happiness, calmness, and patience. I am accepting the new me, and, with my limitations, I am finding new ways to adapt. I have let go of the past and my old ways of thinking of what I believed of myself.

I have gained wisdom, knowledge, self-confidence, and the courage to look fear in the eyes – to truly know that being a survivor means being a fighter and not to give up no matter how dark my world gets.

I want to awaken others to their true colors by helping them accept their new life after trauma – to help them heal through art.

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

I dislike that I can’t stay on task or stay organized. I am forgetful, and I talk strange sometimes because I can’t remember the right word. I regret the loss of close family and friends who don’t understand.

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

Art and poetry 🙂 

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

For a few years, I lost what empathy was. My emotions were all over the place. I had a lot of anger and resentment in me. You find your own “True Colors” with a brain injury or from a trauma where it can get very confusing when you are trying to find your true self. Unfortunately, the sad truth is that sometimes you see the “True Colors” of your loved ones. We can look fine on the outside, but no one can see our brain on the inside all messed up trying to find a new way of living.

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

Yes. I have social anxiety at times, and I’m embarrassed when I talk and can’t find the words or when I can’t stay on task.

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

Me, myself. and I

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

I hope to travel around the world with my story and products and to teach my art. And, I hope to also donate money to the Brain Injury Association of New Hampshire and other non-profit organizations.

I had to lose everything from suffering traumatic brain injuries due to repeated head injuries. I also had to deal with being diagnosed with viral meningitis in March 2015. Then in the year 2016, I lost my home, and all my personal belongings were discarded because of toxic environmental illnesses. I’m surviving by designing.

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 isn’t the ending to your life; it’s a new beginning. We all are creative. So, you just must keep trying new things, whether it be writing, poetry, drawing, photography, ceramics, embroidery, knitting, singing, or dancing. There is so much you can do – you are not your disability or a diagnosis a doctor gives you. I never gave up hope. I kept learning and reaching for my dreams when all I saw was darkness

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

Every struggle, every life-lesson is a gift because it makes you go deeper into yourself to find your “true colors” – your inner strength, courage, wisdom, and confidence.

I want others to see and know that there is beauty in the darkness, that there is beauty in your pain and tears and heartache. There is beauty in the ashes. There is a rainbow after the storm. I hope people see my True Colors as a message of hope and faith and love, to give them the hope and courage and strength to show it is possible to overcome the battles we endure in this lifetime.

I never went to art school. I have no degree – just education from repeated concussions and my life-situations. My art saved my life and is continuing to do. It helps with built-up resentment, emotions, grief, and physical pain. Art teaches that you are a new person after your injury, and it teaches how to adapt to your new life. Art is my therapy. I take the physical and emotional pain I feel and I turn it into something beautiful and bright on the canvas.

3 Alisa Marie

Never give up!

To learn more about Alisa Marie, check out her website at Alisa’s True Colors.

(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.

anim0014-1_e0-1

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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.

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New NEWS: . . . . . . . 2019 Caregiving Visionary Award Finalist

New News:    2019 Caregiving Visionary Award Finalist

presented by

Donna O’Donnell Figurski

th-1YAY! I am one of ten finalists for the 2019 Caregiving Visionary caregiver-word-clipart-1Award, so I’m still in the running. A great big THANK YOU to all who voted for me. Your votes helped immensely. YOU made this happen and I am so honored to be a finalist. Winners will be announced March 1st.

Thank you! Thank you! Thank you! THANK YOU!

 

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Survivors SPEAK OUT! …….. Alan Gregory

Survivors SPEAK OUT! Alan Gregory

presented by

Donna O’Donnell Figurski

 

Alan Gregory 2

Alan Gregory – Brain Injury Survivor

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

Alan Gregory

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

Charlevoix, Michigan, USA     ajgregory@chartermi.net

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

January 5, 2016     I was 52 at the time.

4. How did your brain injury occur?

I slipped on ice in our driveway while going to move my wife’s car. I had just gotten home from work on a Friday evening, and I went to get into her car. I stepped on a patch man slips and falls in waterof ice and flew up into the air, landed on my back, and then hit the back of my head on the concrete. I still remember that awful “Crunch” sound.

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

I had suffered a concussion when I was hit in the head by a softball while coaching, so I knew the symptoms and the feeling. My wife is a Registered Nurse, so she knew I had to rest, and she kept checking on me all the time. After a trip to the Emergency Room, I expected the symptoms to go away in a few days or so. The ER doctor said I would be OK in a week at most. I returned to work on Wednesday (four days after the fall happened) because I had so much work to do in my job.

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

I went to the Emergency Room at the time of my fall. I was released with orders to just rest for a few days and stay in dark, quiet areas. That was my treatment … nothing else.

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

No. I was only knocked out for a second or two.

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 outpatient rehab at New Approaches Center. I had physical therapy, occupational therapy, speech therapy, and cognitive therapy. I was at New Approaches as a patient for almost a year, with visits three times/week.

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

I have a balance problem, which is even worse when I “crash.” In the beginning, my crashes would happen randomly, and I would get severe dizziness, nausea, and confusion. Over time, these episodes started to spread apart, and now they hit when I am fatigued or overstimulated – usually 3-4 times/week at least. When I crash, my wife helps me into bed, and I usually nap two to three hours. Sometime, I wake up and feel good to go; sometimes, I am still very listless, and my brain feels like it is operating at about 20% at best.download_image

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

Ha! Does anyone every answer “No”? Yes – life has changed dramatically! There are lots of adjustments and lots of compromises, but we do what we can do. First of all, I lost my job after 30 years with the same company. What really ticks me off about that is that I worked at home (company laptop) for five months after my traumatic brain injury (TBI). I tried to return to work, but the lights and general office-noise just hit me hard, and twice they found me on the floor throwing up. After that, I was told not to come back until I had a “clean bill of health from a doctor.” Yeah, right! I would work as long as I could on the laptop (30-40 mins at first) and then go lie down in dark and quiet. I would then come back later and try some more work. I was able to keep things going and get my reports out on time. I even helped do the monthly closing for each month, and I got things done in a timely manner. Sometimes I would work until I threw up, rest for a while, and then come back for more. I did everything I could and was assured by Human Resources that my job was safe. I asked about coming back part-time (as my doctor recommended) or even about working with no bright lights or noise, but I was told the company did not do that! So, I hit the 6-month mark from the date of my last work day IN the office (not counting my work at home – since I was told that “no one asked me to do that”), and they put me on disability. I was told I had 6 months from that date and I would be released. I was improving, but at a relatively slow pace. I could come back and try full-time – something every doctor and therapist said was a bad idea. But, if I did that, I lost all disability claims for the future. So, they let me go and dropped my insurance, and that was it.

My life may have changed for the better. I think I am a much more patient and caring person NOW. I stop and think about how people might be feeling and how I can help in some way. I am not stressed-out like I was because of my job … but my family has struggled financially from my losing my job. Life is different. I struggle to move on totally, as I still have a lot of deep-seated issues with people who did not help me at my former employer and with “friends” (at least I thought they were) who have nothing to do with me after my TBI. That is probably the next biggest thing – how people treat me or avoid me. Why? What did I do? You think I like being this way? I wish I could go back to work.

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

I miss my pre-TBI energy level … I felt like I could work hard for 9-10 hours in my job and then come home and help around the house. Now, I have to watch what I do and know that I may crash later.

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

I like having more time with my family. My get-so-caught-up-in making a living and doing my job meant that life just got away from us sometimes. It has been nice to get to spend more time with my wife and my boys – even though one is now in the Army. I feel like we have a better relationship.

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

I used to consider myself smart and very good at my job. I was an accountant, and I worked for years to get to where I was. I went to night-school for over ten years to finish up my Bachelor’s Degree, and I was three classes into my Master’s schedule. I had a 3.98 GPA when I fell.1440606034164831363did-you-know-auditors-are-usually-accountants-work-in--809089-hi

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

Reading books from people like Amy Zellmer and so many other wonderful people helped me to know that I was not alone. But, joining Facebook groups like Amy’s “TBI Tribe” really helped so much. I get to talk to people, and I always get their suggestions and ideas on things to do. Dr. Glenn Johnson and all the therapists at New Approaches helped me so much.

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

Of course. My TBI has changed the way my wife and I do things – simple things, like mowing the grass or shoveling snow. I have to watch what I do and be honest with myself on how I feel. I do think the TBI has made me open and easy to talk with.

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

Yes. We go out with a very small group of friends, and we had to prepare them in case I crash. They have all witnessed it now, and some are very helpful. Some also just kind of back-off. I am 6’2”, and my wife is only 5’2”, so she sometimes needs some help with me.

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

thMy wife is my main caregiver. She is amazing, and I would be lost without her love and support. She is my rock. I know the things to do as a caregiver, but I also know how hard it can be.

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

I take things more as one day, or maybe a few days, at a time now. I am much more flexible, and I do what I can each day. I hope I am still improving and helping others in ten years.

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.

BE PATIENT, so give yourself time. Learning to live with a TBI takes a while … not days or weeks … but longer. Love each other.

Alan Gregory 3

Alan Gregory – Survivor of Brain Injury

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

My advice is to not take personally the actions of others, but it’s easier said than done. I still feel bad that people whom I called close friends treated me like I had the plague after my fall. But, they just don’t get it. WE do! So, look to people who really understand and get it.

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Caregivers SPEAK OUT! . . . . Malissa Mallett (caregiver for her son)

Caregivers SPEAK OUT!

Malissa Mallett (caregiver for her son)

presented by

Donna O’Donnell Figurski

“Malissa Mallett will be my guest tomorrow (Sunday, February 17) on my radio show (Another Fork in the Road) on the Brain Injury Radio Network. She has been caregiver for her son, who had an anoxic brain injury, since 1997, when he was an infant. Malissa is Program Director for the Brain Injury Alliance of Arizona (BIAAZ). We will discuss caring for her son and the effect of her expertise (opioid use on the brain.) My show broadcasts live at 5:30 PT (blogtalkradio.com/braininjuryradio), or it can be heard as a podcast anytime (https://survivingtraumaticbraininjury.com/category/on-the-air-show-menu/).”

Malissa Mallett

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

Malissa Mallett

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

Laveen, Arizona, USA     Program@biaaz.org

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?

The survivor is my son. He was 2 months old. His brain injury was caused by aspiration, causing him to stop breathing (anoxic brain 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?

My care began in April 1997. I was 22 years old. I was my son’s main caregiver then, but I’m not now.

th

Babies get brain injury too

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

No

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

I had just returned to work after giving birth. I was not able to continue working, since my son required 24-hour supervision for his heart and lung monitor.

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

Occasionally. My family, who were trained in CPR, would care for my son to give me a break or a night out.

cartoon-hospital8. When did your support of the survivor begin (e.g., immediately – in the hospital; when the survivor returned home; etc.)?

In the hospital

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

No

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?

No

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

This is difficult to answer given my son’s age at the time of his brain injury.

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

My life was challenging all throughout my son’s life.

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

I will never know what could have been.

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

Does not apply

15. What do you like least about brain injury?

shakilaramanwordpresscom

Learn about brain injury

The lack of understanding in the community

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

Yes. Education.

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

Yes, it has. We can discuss this on your radio show. It’s too much to explain here.

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

Not anymore

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

I would love for my son to be successful and independent.

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

supportTake care of yourself.

Be surrounded by supportive people.

Educate yourself.

 

(Clip Art compliments of Bing.)

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Past Blast: Mansion Dancing Under the Stars

“TBI Tales: Mansion Dancing Under the Stars”

(originally published April 26, 2014)

presented by

Donna O’Donnell Figurski

mansion-at-westport

David and I met on the dance floor when I was 16 years old. He was 17. We fell in love under a strobe light. Through our married years, we danced at weddings and at parties, but when David’s Traumatic Brain Injury left his body as limp as Raggedy Andy, I never dreamed that David and I would ever dance again. But, during a recent trip to Westport, Massachusetts, to spend time with our son, Jared, his fiancé, Emily, and her family, we found ourselves staying in a mansion … only feet from the Atlantic Ocean. Our host, dancers-thSusan, was beyond gracious, concerned about our every comfort. On our second night there, she threw a big family party on her extensive patio and even more expansive grounds overlooking the ocean; and she invited us. We stopped in about midnight.

The partygoers were huddled around the fire-ring … music still blaring. Jared and Emily began to dance on the patio. I swayed. David sat in a tall patio chair. Then the unthinkable happened. David asked me to dance. I hadn’t expected that! David can barely walk – dancing had not been on his radar for more than seven years. I looked at him expectantly. Was he kidding, being facetious? ballroom_dancing_stars_swinging_lg_clrNo! With a huge grin, I answered, “Yes!”

We didn’t Cha-Cha or Swing, as we had learned in our Ballroom Dance classes. We didn’t attempt the Fox Trot, or even the Waltz, though Paula, our dance instructor after David had his TBI (another story), would have been proud of us if we had. But, we did our own dance. We swayed back and forth – never moving our feet. We call it the “TBI Sway.” We swayed with my head resting against David’s shoulder and his hand gently placed at the small of my back. We swayed with David holding on to me for dear life … for balance. We danced under the stars to an old favorite, “Unchained Melody” by The Righteous Brothers, with the sounds of ocean waves lapping the shore, with smiles on our lips, and remembrances of days gone by … and the promise of our days ahead.dance under stars

anim0014-1_e0-1As I say after each post:

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

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If you have a story to tell, please contact me at donnaodonnellfigurski@gmail.com

Survivors SPEAK OUT! . . . . Robb Anthony Filippes

Survivors SPEAK OUT! Robb Anthony Filippes

presented by

Donna O’Donnell Figurski

 

Rob Filippes 052018

Robb Anthony Filippes – survivor of brain injury

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

Robb Anthony Filippes

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

Evansville, Indiana, USA

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

May 22, 2016

4. How did your brain injury occur?

I had a full cardiac arrest.

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

I realized I had a problem when I woke up, and I had to go to HealthSouth Deaconess Rehabilitation Hospital.

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

Well, I was on life-support … cartoon+infus

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

Yes. One week

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)?

Yes. I was an inpatient at HealthSouth.

How long were you in rehab?

One month

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

I lost my short-term memory. Balance is a problem. Sometimes I need to use a cane or a walker. My personality changed; I became nicer.

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

My life is better.

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

Nothing. I was a drug addict for 35 years. (I’m 51 years old.)

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

I greatly appreciate that I’m still functioning. I’m very lucky.

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

I dislike my short-term memory loss.

14. Has anything helped you to accept your brain injury?Shrink 2

I still have a hard time accepting my brain injury. I go to a “shrink” now.

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

My brain injury actually made my home life better. I was about to lose my marriage over it. (I lost my first marriage from it.)

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

Robb Anthony Filippes &amp; Wife

Survivor – Robb Anthony Filippes & wife

Yes. I don’t see anyone.

17. Who is your main caregiver?

My wife

Do you understand what it takes to be a caregiver?

Not really. She does everything for me and our family.

18. What are your plans?

I hope to help others with addiction.

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

Rob Filippes Survivor 2 0520118

Robb Anthony Filippes – survivor of brain injury

I hope to still be alive and to have helped people, even if it’s one person.

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.

Get counseling right away

20. What advice would you offer to other brain-injury survivors?

Never Give UpDon’t give up!

Do you have any other comments that you would like to add?

All brain-injured people are in my prayers.

 

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