Another Fork in the Road | Surviving Traumatic Brain Injury

TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘Another Fork in the Road’

SPEAK OUT! . . . . . . . . . . . . . . . . . . . Guest Blogger: Kristin Olliney . . . My Fight: The Reason to Advocate

My Fight: The Reason to Advocate

Kristin Olliney

(presented by Donna O’Donnell Figurski)

Isabella’s Acquired Brain Injury (ABI) is the result of sudden acute encephalitis. However, there was also medical error involved in her care. Given the many factors involved, it is difficult to prove which symptom caused what damage. Due to this, no one will ever be held accountable for what happened. As a result, there are four important reminders that everyone needs to know.

It doesn’t matter where you live. Even in the best city, at the best hospital, with the best doctor, mistakes can happen. I am often told how lucky I am to live in the Boston area because we have access to so many medical facilities. While this is true, not all doctors and care are the same.

Doctors are human. They are people who have studied medicine and, based on their knowledge, give you their opinion. It is not fact. It is opinion. Their opinion is their best guess. This is so important to remember, especially when given a prognosis. Isabella, like many other survivors, was not supposed to make it through the night, and yet she did.
Kristin Olliney with Isabella 2014

Always follow your gut instinct, especially if something doesn’t seem right. Ask questions. When Isabella first got sick, the Emergency Department wanted to discharge her with a stomach bug. I knew that there was something seriously wrong. I can’t explain how I felt – only that I just knew. I fought and advocated to get Isabella admitted into the hospital. One of Isabella’s specialists was on call, and he trusted my gut instinct. Later in the PICU (pediatric intensive care unit), as I watched my child fighting for her life, I was told by him and other doctors that my fighting and advocating saved Isabella. If Isabella had been discharged, she would have died. Always fight and advocate for what you feel is right. You know your child/loved one better than anyone.

Get another opinion. When you are in crisis, there isn’t always time. When things stabilize, seek out another opinion should you and the doctor have a difference of opinion. On this journey, things can change. Opinions differ, treatment options vary, and, if there are fundamental differences, another opinion can help.
Kristin Olliney & daughter, Isabella
2015

For me, it is hard knowing that the doctors who cared for my daughter made mistakes. Coming to terms with the fact that no one will ever be held accountable for what happened to Isabella is difficult. I know Isabella is here because I fought and advocated. It is still devastating to know that mistakes could have been prevented. I am sharing this part of our journey in hopes that it will encourage others to continue to fight and advocate for their child/loved one. Against all odds, my amazing miracle is here today, and, for that, I am forever grateful.

To learn more about Kristin and Isabella, please visit Kristin’s website/blog at In An Instant Your Life Can Change Forever – Brain Injury Association of Massachusetts Blog

Thank you, Kristin Olliney.

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

(Clip Art compliments of Bing.)

(Photos compliments of Kristin Olliney.)

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Guest Bloggers

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TBI Tales . . . Tracking Miles in Electric Blue and Shiny Mango

Tracking Miles in Electric Blue and Shiny Mango

Donna O’Donnell Figurski

Catherine (Cat) Brubaker (TBI survivor) got a black Catrike 700. Dan Zimmerman (Stroke survivor) got a black Catrike 700. They pedaled across America diagonally, 5,300 miles, and it changed each of their lives.

David Figurski (TBI survivor) got a trike, an electric blue Catrike 700, the same model as Cat and Dan’s, but a different color.

Donna O’Donnell Figurski (copycat) got a trike, too. Though to show her independence, she didn’t get a Catrike 700. She went for the Shiny Mango Pocket Trike. It’s cute!

Now David and Donna want to match Cat and Dan’s GOAL! We want to trike 5,300 miles in the desert. I wonder how long it will take us.

LET’S GO!

NAME DATE Total MILES since 4/9/15

David 1/24/16 1,570

NAME DATE Total MILES since 4/9/15

Donna 1/24/16 79

As I say after each post:

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

Please follow my blog. Click on “Follow” on the top right sidebar. (It’s nice to know there are readers out there.)

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

If you don’t like my blog, “Share” it (intact) with your enemies. I don’t care!

Feel free to “Like” my post.

(Clip Art compliments of Bing.)

(Photos compliments of Me.)

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TBI Tales

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TBI Tales . . . . . . . . . . . . . . . . . . Freedom and a Blue, Metallic Trike

FREEDOM and a Blue-Metallic Trike

(presented by Donna O’Donnell Figurski)

April 9, 2015 marks a pretty exciting day for us. It’s the first official day of David’s independence since his brain injury in 2005. David recently bought a Catrike 700 recumbent trike. This sleek, low-to-the-ground, metallic-blue machine will be his wheels and his freedom.

Because of severe balance issues due to his brain injury and the damage to his cerebellum, David has been unable to leave our home unattended for the past ten years. With his Catrike 700, he can hop on and and pedal away for hours and hours. (Well, not really hop on, but that sounded better than crawl or climb on.) Of course, his limitation of getting off the trike because he is unable to walk anywhere on his own remains a problem. But, that won’t deter David.

David’s first excursion was a 5-mile trip around the winding, scenic roads in our neighborhood. Pedaling down streets lined with palm trees and a variety of cacti, many of which are in bloom right now, was liberating and fun, if the grin plastered on his face when he returned was any indication.

Later the same afternoon, David guided me on my first recumbent-trike trip. I have a yellow/mango Pocket Catrike, and I love it.

Today, David is riding with friends in a neighboring community. What fun! This is only the beginning.

As I say after each post:

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

Please follow my blog. Click on “Follow” on the top right sidebar. (It’s nice to know there are readers out there.)

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

If you don’t like my blog, “Share” it with your enemies. I don’t care!

Feel free to “Like” my post.

(Clip Art compliments of Bing.)

(Photos compliments of Me.)

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TBI Tales

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SPEAK OUT! . . . . . . . . . . . . . . . . . Itty-Bitty GIANT Steps

Michelle Lee Bonnenfant (survivor)…With hubby’s help, I made it through a busy grocery store. Ken, my hubby, got me in and out in one piece! He even stood three feet behind me in the check out so that I would not get crowded by people. It was the first time in months that I went through a check out. I was plagued by a lot of sweat and chest pain, but I still did it. I hate my TBI and PTSD (post-traumatic stress disorder), but Ken gave me a big hug and told me that he was proud of me. I’m exhausted, but pleased with myself!

Cara Lauderdale Eberle (caregiver)…The one-year anniversary of my husband’s accident was April 1st. While I was at work sitting at a table of four-year-olds trying to get them to do a project with me, I saw them all stop and look up. Standing next to me was my husband holding a beautiful bouquet of flowers. I was in complete shock! He hasn’t shown any concern for the feelings of others since the accident. He told me he thought that he should do something to thank me for helping him get through the last year. This was definitely a breakthrough moment for us. 🙂

David Figurski (survivor)…I am excited! I took delivery of a Catrike 700 recumbent trike. It’s the same model that was used by Catherine Brubaker (a two-time TBI survivor) and Dan Zimmerman (a stroke survivor) on their five-month, cross-country ride from Washington State to Florida. Cat and Dan espouse their new-found freedom, and their new physical capabilities are truly amazing. They both believe that riding a recumbent trike is great therapy. Also, my wife, Donna, just took delivery of the Catrike Pocket, a slightly smaller trike. Donna, Cat, Dan, and I plan to ride together.

Corina Mendoza (survivor)…I passed my teaching exam for Special Education! I passed both teaching exams I needed on the first try.

YOU did it!

Congratulations to all contributors!

(Clip Art compliments of Bing.)

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Itty-Bitty GIANT Step

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Speaking Engagement . . . . . . . “Prisoner Without Bars . . . . . . . . . . . A Caregiver’s Story”

YOU ARE INVITED!

When Donna’s spouse, David, did one chin-up too many, he had a brain injury (BI), and Donna became a caregiver. David had three brain surgeries within two weeks. Donna signed on the dotted line for each of them – probably the hardest thing she has ever done in her life. Donna will share her story, “Prisoner Without Bars: A Caregiver’s Story” about David’s unexpected recovery and how she and David are making this “new normal” work for them. She will also share tips and offer suggestions from what she learned along the way.

It’s been a long, bumpy road for both David and Donna, but they travel that road together.

Come One! Come ALL!

Post-Brain Injury 2010

What: Donna will share her experiences with caregiving and will offer tips based on what worked for her. Donna will also share snippets of her book, “Prisoners Without Bars: A Caregiver’s Memoir,” which is searching for a publisher.

Why: Hopefully, Donna’s experiences with caregiving will help others who might find themselves in this position

When: Monday, April 6, 2015

Time: 1:00 to 2:30pm

Where: Desert Palms Presbyterian Church
13459 W. Stardust Boulevard
Sun City West, Arizona 85375-2548

(Clip Art compliments of Bing.)

(Photos compliments of Donna)

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Events Calendar

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SPEAK OUT! . . . . . . . . . . . . . . . . . Itty-Bitty GIANT Steps

SPEAK OUT! Itty-Bitty GIANT Steps

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 neelyf@aol.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.

Here are this week’s Itty-Bitty Giant Steps

Cat Brubaker with Congresswoman Krysten Sinema

Catherine (Cat) Brubaker (survivor)…I’m very excited to have gone all the way to Washington, DC, all by myself.

I planned it, and I got to my appointments on time. I still used a wheelchair at the airport because of overstimulation, shaky balance, and the possibility of getting lost. I met with my congresswoman about brain injury and about helping me with my new foundation, Hope for Trauma. I can’t believe how far I’ve come in a year. I feel very excited.

Jonathan Curtis (survivor)…Today I had an amazing day at my volunteer job at a nursing home. I went with a difficult resident to an eye clinic appointment, and I organized a movie in the nursing home coffee shop. I felt so able and competent!

Keri Giacomini (caregiver)…My husband, John, had a very severe TBI almost twelve years ago. While he was at college, he fell out of a third floor window. The only residual problems are from aphasia. But, he does really well. Also, he is so sweet and thoughtful. A few days ago, we were talking about my care bear, which I’ve had since I was four (that is, for 27 years). He is a secret bear. He is now brown, has no eyes, and doesn’t talk. John knows how much my care bear means to me. He’s been with me through the toughest of times – surgery, hospitalizations, etc. I have Crohn’s Disease, and my care bear has always been my comfort. Well after we were talking, John went on eBay and ordered me an original secret care bear that still talks. He knows how much it means to me. It was probably the sweetest thing he’s done. I just thought I’d share what he did because, while John is always caring and sweet, sometimes it’s hard for him to initiate things.

Timothy Guetling (survivor)…Swaim Guetling is soon to graduate from the University of California at Santa Barbara (UCSB). He is a Communications major with a 3.5 GPA. Swaim is my 21-year-old son. I’m thankful that he is where he can do best for himself and that he took the love, respect, and guidance from his parents to assist him in his future, wherever it takes him. Swaim speaks four languages. He has been around the US, India, and China with his fellow students. I am stoked to the max. He’s a chip off the old block, except he has hair!

YOU did it!

Congratulations to all contributors!

(Clip Art compliments of Bing.)

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Itty-Bitty GIANT Step

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SPEAK OUT! . . . . . . . . . . . . . . . . . Faces of Brain Injury

Brain Injury is Not Discriminating

It can happen to anyone, anytime, . . . and anywhere.

The Brain Trauma Foundation states that there are 5.3 million people in the United States living with some form of brain injury.

On “Faces of Brain Injury,” you will meet survivors living with brain injury. I hope that their stories will help you to understand the serious implications and complications of brain injury.

The stories on SPEAK OUT! Faces of Brain Injury are published with the permission of the survivor or designated caregiver.

If you would like your story to be published, please send a short account and two photos to me at neelyf@aol.com. I’d love to publish your story and raise awareness for Brain Injury – one view at a time.

Cam Compton (survivor)

On March 21^st, I celebrated my “strokaversary.” Three years ago, I suffered a stroke. It has changed my life dramatically. I am still “me” – still Cam – but at the same time, I am not. I have learned to live and to love this new me. I have had fun. Whatever I was before (like fun or nerdy), I am still that, but three times more so now. I have met many new friends. I have done things that I would never have done if I had not had my stroke: my billboards, the talks, facilitating a stroke support-group, the stroke walk (mark April 18^th on your calendar), and my newest – Brain Injury Radio host. I will be hosting my own show on the second Friday of every month. I’m happy to be here alive and on this side of the dirt.

Lindsey Dunn (survivor)

Yesterday was two years ago that I fell about sixty feet on a spiral staircase in Valencia, Spain. I hit my head on the way down (on one of the metal spindles), causing me to get a traumatic brain injury. I am actually very happy that this happened to me. I’m lucky that people have stuck by my side through this trial. Maybe my story will give hope to people and God can use it to help others.

Marcel’s moms (caregivers)

When our son, Marcel, was eleven months old, he suffered a severe TBI. The doctors told us that he would never eat, walk, see, or talk – basically that he would be a vegetable. It’s been eight months, and his vision is starting to come back, he’s smiling and laughing, and he’s getting neck strength back. His limbs are getting stronger and starting to move a lot. He’s learning how to eat again. And he babbles like a baby. Marcel has come so far, but he still has a long way to go. Obviously, God has plans for Marcel because he is a fighter. He was so close to dying, but he fought to stay here. A lot of people, doctors, and nurses told us all the things that our son would never do. Our boy will continue to fight and prove to everyone that he can. He’s doing many of them already.

Daniel Wondercheck (survivor)

On July 23, 1991, I was involved in a construction accident that was serious enough to smash my hardhat, crack my skull, and knock me out for six days. I spent 85 days in the hospital, 95 days as an inpatient in a rehabilitation hospital, and another 186 days in rehabilitation as an outpatient. Now – twenty-three years and nearly eight months later, I still use a wheelchair, I talk funny, I have involuntary movements in my extremities, my left eye moistens itself approximately half as much as it should, and my right eye does not moisten itself at all. For 26.5 hours per week, I have a personal assistant who helps me with daily-living activities. (My personal assistant is also my best friend and “guardian angel.”) But, I do have enough mental ability to be a top-rated Power Seller on eBay and to be an administrator for an online support-group for traumatic brain injury survivors (Traumatic Brain Injury – TBI – Terrific Beyond Injury).

(Clip art compliments of Bing.)

(Photos compliments of contributors.)

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Faces of Brain Injury

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Brain Injury Resources . . . . . . Fatigue and The Spoon Theory

Fatigue and The Spoon Theory

Every brain injury is different. Yet, the survivor interviews on this blog have shown that fatigue is a common effect of a brain injury. Once the survivor was energetic – able to do many things. Now the survivor is often tired or worried about getting tired.

Have you ever tried to explain chronic fatigue to someone healthy? Usually he or she doesn’t get it. Christine Miserandino, who has Lupus – a chronic disease, invented The Spoon Theory to show her healthy friend why she is so concerned with the energy cost of doing anything. Christine’s Spoon Theory is a simple way to show the difference between being healthy and energetic and being worried about fatigue by having a chronic condition – like Lupus or a brain injury. In The Spoon Theory, Christine writes, “I explained that some days were worse than others; some days I have more spoons then most. But I can never make it go away, and I can’t forget about it. I always have to think about it.”

Christine’s Spoon Theory can be found HERE.

(Clip Art compliments of Bing.)

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Brain Injury Resources

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Survivors SPEAK OUT! Peter Corfield

Survivors SPEAK OUT! Peter Corfield

Donna O’Donnell Figurski

Peter Corfield – Brain Injury Survivor – 2010

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

Peter Corfield

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

Marcilly En Bassigny, France petercorfield3@gmail.com

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

My brain injury happened on June 1, 2010. I was 55 years old.

4. How did your brain injury occur?

I had a stroke caused by bleeding of an AVM (arteriovenous malformation).

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

After returning from an art course, my wife found me on the floor.

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

I was stabilized, and then I was helicoptered to Dijon Hospital. There they did a craniotomy and repaired the vein.

Peter Corfield – Brain Injury Survivor – 2010

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

Yes. I was put into a coma for about two and a half 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 was sent to a rehab centre. There I had rehab for five and a half months.

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

I was hemiplegic (paralysis of one side of the body) with left-side paralysis, and I had an anxiety problem in the form of overactive bladder.

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

My life has changed a great deal. In some ways, it is better; in others, much worse.

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

I miss being able to sleep in a normal bed with my wife. I also miss playing my guitar and driving.

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

I like being able to help others who have had the same experience.

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

I dislike the lack of normality.

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

My wife’s support has helped. Also my writing has been important.

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

It has. My wife and I sleep apart. But, my stroke has made me more thoughtful towards others. I think I am a better person.

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

Yes. My anxiety affects our going out in the dark. The anxiety also makes it awkward to sit on chairs with no arms.

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

My wife is my caregiver. I fully understand how hard it is for her. It drives me on to recovery.

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

I am determined to be recovered enough to look after my wife and to be helping other stroke survivors

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 injury.

Keep a diary to realise just how much you have improved, as recovery is slow.

Peter Corfield – Brain Injury Survivor – 2010

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

I have written Kindle stroke-experience books. I donate all royalties to The ARNI (Action for Rehabilitation from Neurological Injury) Institute (http://www.arni.uk.com) to try to help other stroke-affected people.

Thank you, Peter, for taking part in this interview. I hope that your experience will offer some hope, comfort, and inspiration to my readers.

(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.

(Photos compliments of Peter.)

Category:

Survivors SPEAK OUT!

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SPEAK OUT! NewsBit . . . . . . . . . . Chris Borland – Rookie Linebacker Retires Over Fear of Brain Trauma

Rookie Linebacker, Chris Borland, Retires Over Fear of Brain Trauma

Chris Borland, a promising rookie linebacker with the San Francisco 49ers, retired after one year of a four-year contact because the possibility of brain disease wasn’t “worth the risk.” (Full story 1; story and video 2)

There is a growing body of evidence that repeated head trauma can lead to neurological problems and premature death. A NewsBit on this blog reported that a University of Tulsa study revealed changes to the brains of football players, even in the absence of a documented concussion. Last season, an Ohio State University football player apparently committed suicide. Concussions may have had a role in his death. The National Football League (NFL), the premier professional football organization in the United States, is in the middle of a multimillion-dollar lawsuit over concussions and neurological problems.

Chris Borland gave careful thought to his early and unexpected retirement. He talked with family, friends, teammates, and brain researchers before making his decision to retire from a game he was good at. He said the game is inherently dangerous, which is not necessarily a bad thing, but a player should make an informed decision. Borland also said, “There’s just too much unknown for me, and there have been too many tragedies for me to be comfortable playing…I just want to live a long, healthy life, and I don’t want to have any neurological diseases or die younger than I would otherwise.” He was asked about walking away from probable wealth. Borland answered that no amount of money could take the place of being there for his family. (Full story 3)

(Clip Art compliments of Bing.)

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NewsBits

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Surviving Traumatic Brain Injury

TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘Another Fork in the Road’

SPEAK OUT! . . . . . . . . . . . . . . . . . . . Guest Blogger: Kristin Olliney . . . My Fight: The Reason to Advocate

TBI Tales . . . Tracking Miles in Electric Blue and Shiny Mango

TBI Tales . . . . . . . . . . . . . . . . . . Freedom and a Blue, Metallic Trike

SPEAK OUT! . . . . . . . . . . . . . . . . . Itty-Bitty GIANT Steps

Speaking Engagement . . . . . . . “Prisoner Without Bars . . . . . . . . . . . A Caregiver’s Story”

SPEAK OUT! . . . . . . . . . . . . . . . . . Itty-Bitty GIANT Steps

SPEAK OUT! . . . . . . . . . . . . . . . . . Faces of Brain Injury

Brain Injury Resources . . . . . . Fatigue and The Spoon Theory

Survivors SPEAK OUT! Peter Corfield

SPEAK OUT! NewsBit . . . . . . . . . . Chris Borland – Rookie Linebacker Retires Over Fear of Brain Trauma

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