TBI – Survivors, Caregivers, Family, and Friends

Archive for November, 2014

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

SPEAK OUT! Itty-Bitty GIANT Steps

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.

 

Here are this week’s Itty-Bitty Giant Steps.

Bart Boughner (survivor)…For me, these past ten days were hard, but I held my head up and I did what is best for me and my kids. I allowed outside people to talk with my doctors. My kids are more than willing to help me with just my being honest. I showed them all my meds and explained every one of them. I stayed true to myself, and things turned out well! It’s never a good thing to hide things from people. I always stay an open book to anyone who wants or needs to know.

Bob Calvert (survivor)…I have had five surgeries since my last trip to Iraq and Afghanistan. I keep hoping that there won’t be any more surgeries. But, it looks like I have no choice for a hernia, and the first of two foot-surgeries did not go well. Next week, my doctor is asking Medicare to approve a wheelchair so I can get out of my apartment. Sometimes it gets to me, but what keeps me going is when I keep hearing story after story of what our military men and women and veterans have gone through as a result of their service to our country and what many of them go through every day. That keeps me sitting at this computer as long as I can every day and keeping our talk show (www.talkingwithheroes.com/about) and our mission going.

Michael Coss (survivor)…I am now starting to walk indoors without a cane – 9 years post injury. “Everything is possible when you believe.”

Penelope DeYoung (caregiver)…My husband had finished 13 days of HBOT (hyperbaric oxygen therapy), when, on Tuesday, October 28th, at 3:00 in the morning, I woke up to the bed’s shaking to find him having a grand mal seizure (the second one in five weeks and only the third in two and a half years). He was blessed in more ways than one. First, he had it in the night, so he was already lying down and on his side. I also kept my cool as I called 9-1-1. My husband has made a giant step forward because the doctor dropped a seizure medication that we now know was causing “brain fog.” He upped the dosage of another anti-seizure drug that was making my husband sick when it was started this past summer, but now his body has adjusted to it, and he is tolerating it very well. The higher dose of the “better” anti-seizure drug and the HBOT together have made Jim much more aware. He has shown initiation and motivation. We went to a spaghetti dinner in our hometown last night. People were awed by how much difference they noticed in his awareness. He knew many more people than I did. It was great to see so many people come up to him and say, “It is so good to see you.” Jim’s response to them was, “It is so good to be seen!” I love the progress he has made cognitively! Thanks for letting me share!

Jamie Fairies (survivor)…Hi, Donna. I saw your post on the wall of the group I created – Supporting ABI (Acquired Brain Injury). I thought that perhaps creating that group in 2007 to promote the awareness of brain injury and the Peer Mentor Support Program for those affected by brain injury would be considered an Itty-Bitty Giant Step. I am a survivor of multiple brain injuries.

Melanie Leatherman (survivor)…An Itty-Bitty Giant Step is something small that’s a big deal for us, right? I’m 4 years post. Every year, I’ve tried to go back to my old profession as a stylist, but it never worked out. Friday I tried again, and I could! Awesome feeling. I think it’s a big accomplishment for me. I can pretty much do everything now that I was told I couldn’t. I live alone with my 13-year-old and cook, wash her clothes, and make her lunches for school – things that most mothers don’t realize how big of a deal that is.

Barbara Zirilli-Lonergan (caregiver)…Today is day 40 for my dad. He’s still in the early stages of his recovery. He’s currently in a vegetative state, and he occasionally responds to commands. I am just thankful for today. Love to all of you.

John E. May (survivor)…I have an incredible giant step. I’m still breathing and unnaturally happy!

Grant Mealy (caregiver)…I’m reminded again not to be so hard on my partner, who has PML (progressive multifocal leukoencephalopathy). He is not what he used to be, and he never will be again. He did not go through a bad illness to irritate me. I will forgive myself for yelling and move foreword. We are lucky to have each other.

Melinda Murphy (survivor)…One of my secrets that very few people knew was that I lost the ability to tie my shoes after my accident because I was unable to tie a bow. Well today, for the first time in over three and a half years, I did it. I have been crying for an hour. It’s the little things as well as the big that are so very important in that whole “independence thing.” God is so good to me.

Marti Lynch Owens (caregiver)…Gene’s Itty-Bitty Giant Step was last night (November 8th). (His accident was September 25th.) His trach has been removed. He said, “Home, Marti,” and I replied, “Not yet.” He asked, “Why?” and I tried to explain. He was angry, but I didn’t care – I was so happy to hear him speak. He always has emotions. After I left, the hospital called. He got himself out of bed. He was sitting on floor and pulled out his feeding tube, but he is fine – Thank God!

Shana Storms (survivor)…My Itty-Bitty Giant Step is that I went back to school. I got my BS degree. Now on to my MS.

Sunshine Struble (caregiver)…GIANT! January 6th will mark two years for my beautiful boy. He has not slept in his room since the incident – at first because his body was incapable of doing stairs, then because he was so fearful of being away from Mom and Dad. Tonight he is sleeping in his newly designed (in his way) room. I am so proud. It brings tears to my eyes.

Sandra Williams (survivor)…I can exercise without shaking. My shaking wasn’t from fatigue. When I began any form of a stretch and held, my legs would shake, even at the beginning. It’s not the same as shaking when your muscles are tired.

Sandra Williams (caregiver)…My son asked for his own 504 meeting and accommodations at work. (Section 504 is a federal law that protects students with disabilities from being discriminated against.) He said, “I need you to fight for me, Mom. The school isn’t listening.” It’s the first time he has admitted he needs help!

YOU did it!

Congratulations to all contributors!

(Clip Art compliments of Bing.)

 

 

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Itty-Bitty GIANT Step

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Catherine Brubaker’s . . . . . . . . Photo Journal – (Part 1) Washington to Florida

Triking Across America – diagonally –

Photo Journal Part 1

Washington to Florida

 

On June 29, 2014, Catherine (Cat) Brubaker and Dan Zimmerman set off from Anacortes, Washington on their recumbent trikes to trike across America – diagonally. Their destination – Key West, Florida – a trip of 5,200 miles.

I can’t even wrap my head around driving 5,200 miles in a car, let alone covering that distance under pedal-power. (I made up that word.)

Here's what 5,200 miles looks like.

Here’s what 5,200 miles looks like.

 

01 Cat on Trike 10350428_10204753083335148_667202674095765199_n

Cat, who survived two brain injuries triked to raise awareness for Traumatic Brain Injury (TBI) on “Cat’s Ride for Life.”

02 Dan on Trike 1069184_441000132665517_2000066735_n

Dan, a stroke survivor, pedaled for awareness for stroke prevention with “Spokes Fighting Strokes.”

This is the van loaded down with equipment that will be traveling with Cat and Dan

This is the van loaded down with equipment, supplies, and food that will be traveling with Cat and Dan.

 

 

 

 

 

 

 

Oops! A blowout before the trip even begins.

Oops! A blowout before the trip even begins

Cat is interviewed by AZCentral - 12 News - The Arizona Republic

Cat is interviewed by AZCentral – 12 News – The Arizona Republic

Cat and Dan ride under "Spokes Fighting Strokes."

Cat and Dan ride under “Spokes Fighting Strokes.”

 

 

 

 

 

Cat and Dan ride about 50 miles per day and their average speed is about 13mph. They’ve seen a wolf, wild turkeys, and even “giant” crickets in Washington. Here are some of the beautiful sites Cat has encountered along the way. (More to come.)

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Check out the Ascent and Elevation on this Garmin.

Cat and Bear sharing a little love.

Cat and Bear sharing a little love.

Washington sites

Washington sites

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Lake McDonald in National Glacier Park

Purple wild flowers along the highway

Purple wild flowers along the highway

Hmm, wondering if this will be Cat's new wheels for another Trip Across America.

Hmm, wondering if this will be Cat’s new wheels for another Trip Across America.

Pure bliss

Pure bliss

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Catherine (Cat) Brubaker

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SPEAK OUT! . . . . . . . . . . . . . . . . . . Guest Blogger: Lee Staniland . . . . What I Can Remember

SPEAK OUT! Guest Blogger: Lee Staniland

What I Can Remember

Girl Blogger cartoon_picture_of_girl_writingIt was June 11, 1978, in Somis, California, so I’ve been told. Because, you see, I have no memory of what happened that day.

I know that I had just gotten back from Arizona, where I became the godparent to my young nephew. I had brought my mother back with me, and for Mother’s Day, I had taken her to Solvang for the day. I also remember taking her to the Burbank Airport for her to go home. I remember all that very clearly, but the actual day of the accident, I remember nothing.

I have been told things so many times that they now have become my memories. I was told that I had been outside washing windows when my husband left to go somewhere. I was probably upset about something or someone because that is the only time I would wash windows.

I put my dogs up in their kennel like I always did when I rode my horse. My husband came home and could not find me anywhere, until he looked out in the pasture, which was in the front of our house. He noticed my horse with her bareback blanket on and a hackamore hanging from her neck.

Our pasture has walnut trees in it, and he found me unconscious under one of the trees. He told everybody that he had always told me not to ride when I was alone.

He gathered me up and took me to Camarillo’s Emergency Room. They sent me to Ventura’s Community Hospital, where I stayed in a coma for six weeks.

I have been told stories of things that happened there, like the time they left me in front of an open window one day. I caught pneumonia as a result. Another time, they kept giving me Dilantin to control seizures, and I was allergic to it. Because of that, I was scratching myself so badly that they tied my hands to the bed so that I could not reach any part of my body.

I guess they must have done most things right, though, because I’m here today to tell you about it.

I came out of the coma six weeks later, and I was sent up to Santa Barbara Rehab, where I spent another 2 or 3 months.

That was where I got my first memory that stuck. I was in a room all by myself, and I could hear people out in the hall. I had no idea where I was or why I was there.

I have memories of little fragments of that time – like being with my family, my sister’s wheeling me around their hotel pool, another sister’s taking me for a car ride around Santa Barbara, and lunch at Micky D’s (MacDonald’s). Funny the things that you remember.

My husband took me out of the hospital to spend the day in Solvang for our first anniversary. That was a super memory. I got to be out of the hospital for a WHOLE day. Wow!

Other memories:

Trying to walk down the hall with a walker, and not doing so well.

The day my brother hid the belt that the nurses had tied around me so that I didn’t fall out of the wheelchair every time I thought that I could stand up on my own.

A great young gal who was supposed to be with me while I cooked a meal that I had chosen.  [There was no way that I could do that yet, so she and her boyfriend cooked and ate a steak dinner (or whatever it was that I had picked out to try to cook). It was so much fun just watching them enjoy it. It still puts a smile on my face whenever I think of it.]

Then there is the memory of crying and pleading with my family to take me home.  They all felt so bad and wanted to do it, but they knew I wasn’t ready, so they would leave and I would just fade out. That is the good thing about not having a good memory. You forget most things that upset you. I remember things a lot better today, but there are times, especially when I am tired, that the old memory just doesn’t work the way it used too.

Well, I finally got to go home. I was so happy.

My parents had moved down from Sacramento to help take care of me. I had to relearn to walk, talk, dress, and feed myself. My old self was a very headstrong person, but I just let everyone help me with life. It’s amazing how your mind protects you from yourself.

After awhile, it was time for my parents to leave. I love them so much, but my parents were smothering me, and I wanted MY house back.

I know my mom was so afraid to leave me to handle things on my own, but it was the best thing for me.

I want to tell all you caregivers a secret. I know that it is a lot easier if you just do everything for us, but please don’t. I believe that is how I got to be as good as I am. After my parents left, I had to do everything myself – from taking care of a big house to caring for cows, chickens, dogs, and cats and helping to run a carpet-supply warehouse. I sold my horse because I could not ride her then. Oh yeah, I just remembered that my rooster would chase me whenever I would go out to collect eggs. They always go after the weakest thing, and that was me.

I forgot to mention that we were also still in the process of finishing the house we were building and living in. Talk about crazy!

I am so thankful that the part of my brain that reasons things out was not damaged completely. Don’t get me wrong. I know that there are times when I get a little crazy about things. Maybe other people who do not have a brain injury would handle the situation a lot differently, but I do the best that I can.

I am now remarried to a man who does pretty well for someone who was not with me from the beginning. I think he has learned a lot from me. I have learned a lot from him.

When someone says to me, “Oh your head injury must not have been very serious,” I would like to shake him or her. I had to work very hard to get where I am. I had Someone looking over me, and He decided that my time was not up yet and that I have something that I’m still supposed to do. I believe my purpose in life is to be with my fellow brain injured and to give them and their families hope.

I am very satisfied with my life right now, and maybe that is because I have been given back most of my old self. And then Staniland, Lee-1maybe it is because I have some of the best people around me. So here is a big Thank You to all those wonderful people who have stuck by me through thick and thin.

I love you!

 

Thank you, Lee Staniland.

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

(Clip Art compliments of Bing.)

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Guest Bloggers

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Survivor’s SPEAK OUT! – Daniel Mollino

SPEAK OUT! – Daniel Mollino

by

Donna O’Donnell Figurski

 

 

Daniel Mollino - TBI Survivor & Cyclist

Daniel Mollino – TBI Survivor & Cyclist

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

Daniel Mollino

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

Ringwood, New Jersey, USA     Daniel@mollino.net

3. When did you have your TBI? At what age?

August 11, 2010     Age 27

4. How did your TBI occur?

At work, I fell from a ladder on a telephone pole.

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

Right away. The emergency response was fast.

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

I was in a medically induced coma. I had a craniotomy, and a shunt was inserted.

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

I was in the medically induced coma for about three 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)?

I had speech therapy as an inpatient. As an outpatient, I had physical therapy and therapy for executive skills.

How long were you in rehab?

Three months as an inpatient; a little over a year as an outpatient.

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

I have deafness of and ringing in my right ear. I have issues with fatigue, memory, balance, personality, pain, and finding words. (See my website below for more details.)

Daniel Mollino - TBI Survivor in hospital

Daniel Mollino – TBI Survivor in hospital

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

Things became harder. It is in some ways better and in others, worse.

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

My memory

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

That I got back to being able to ride

13. What do you like least about your TBI?

The problem with my memory; also the public’s understanding of how a TBI impacts a person

14. Has anything helped you to accept your TBI?

My family’s being there helped. My strong headed, never-give-in mentality stuck and resulted in the support and the joining in of larger groups in my 2015 cross country bike ride to get brain injury addressed and donations to research groups. I am also on a calling basis with the offices of federal politicians from my district trying to get them to fix a system I saw fail. Hopefully the ride will get more people calling their politicians.

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

My home life changed in some ways. My wife and I switched roles – but not in a bad way.

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

My social life hasn’t really changed that much. But, my deafness is an issue, and I don’t like loud environments.

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

My wife is my main caregiver. Thankfully, I am not as bad off as some.

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

My future plans are in motion. I am biking coast to coast in hopes of getting attention for brain injury and donations flowing to research groups. I also hope I can get the media involved and possibly get more sponsors, so I can continue on that path for years to come. A book would be nice. However, my English is really bad, so I am looking for a ghostwriter. My hope is that I can keep going and prove that “disabled” does not mean that someone is incapable of great things. That aspect is aimed at all those who give up.

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 TBI survivors with your specific kind of TBI.

I have to say no, but I may be wrong. As I have said to others, when you accept “broken” as a status, you will always be broken. You need always to push for a want. Nothing is impossible, but life is a pathway of obstacles. You will at times just have to step back and find another way. For when you give up trying, that is the point in the life that you have willfully chosen to be in the broken state.

20. What advice would you offer to other TBI survivors?

Fight for what you want. Ask others for help, and keep your eyes on the goal. Never give in to defeat. My personal view is that I will do this or die trying. Not to sound morbid, but the idea is that if you try your entire life, you are living life – not letting life live you.

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

I hope that some of you see my ride as I post my routes and progress in 2015 and show up if you’re near. Nothing is better than seeing others involved and having the support. I will be personally calling media stations I can find numbers to, but getting calls from others, sharing photos on Facebook, etc. would be a great help. The more exposure and media I get, the more we can educate the public and force the politicians to move on fixing the issues.

 

You can learn more about Daniel at the following sites.

TBI to Victory

TBI Rider

Double Cross-Country Bicycle Ride Will Challenge New Jersey TBI Athlete

 Stroll ‘N Roll With Kessler Foundation at Verona Park

Daniel Mollino - TBI Survivor & Sky Diver

Daniel Mollino – TBI Survivor & Sky Diver

 

 

Thank you, Daniel, 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.)

(Photos compliments of Daniel.)

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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Survivors SPEAK OUT!

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

SPEAK OUT! Itty-Bitty GIANT Steps

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.

 

Here are this week’s Itty-Bitty Giant Steps.

Jessica…Made it to about ten houses Trick or Treating with my kiddos before it became too much for me. BUT I am CELEBRATING because I only went to a few last year, and I don’t even really remember it! I post this for those mourning the loss of the “old you.” It gets better. No, I’m not able to do what I used to do, but I have learned/am learning to appreciate the little victories in life, and I am counting my blessings. I have a great husband, who took over for me, and I got 30 minutes of “alone time” before my kids returned. (Isn’t that what most moms want – “alone time”? LOL.)

Bernadette McSorley Futch…After having a hemorrhagic stroke at 11, I got a job when I was 16. Basically I lived my life as though nothing happened. Now that I have had three additional surgeries to control seizures, I decided I have to slow down and focus on keeping my terminally ill husband comfortable. When he does pass, I would like to call the Board and tell them why I let my Massage Therapist license lapse. I plan to try to get back to doing massage. Being able to laugh at yourself helps, and there is always Faith.

YOU did it!

Congratulations to all contributors!

(Clip Art compliments of Bing.)

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Itty-Bitty GIANT Step

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On the Air – Brain Injury Radio Interview with Dr. David Figurski Prisoner without Bars: Conquering Traumatic Brain Injury

On the Air – Brain Injury Radio

Interview with Dr. David Figurski

Prisoner without Bars: Conquering Traumatic Brain Injury

images-1

You’ve heard David’s story from my point of view. Yesterday David shared his perspective of living with traumatic brain injury. He spoke about how his life has greatly changed for better…and for worse.

david-running-in-hall-

David Figurski 3wks before Traumatic Brain Injury

We learned about David’s life as a child and his educational career, which he began as a Kindergarten dropout. He told of the years that led up to our marriage and also about his life as a Professor of Microbiology at Columbia University, both before and after his TBI. We found out how he is coping with this new life thrust upon him…and upon us. The show ends with me brushing tears from my cheeks as David talks about the heroic acts of caregivers and my role in his recovery.

12 D&D I Donna O'Donnell Figurski & David Figurski Dancing 13 copy

David & Donna Figurski Starlight Dance Studio 8yrs after Traumatic Brain Injury

If you missed the show, don’t fret. You can always listen to the archived show. I’ve included the link below.

Please SHARE!

I hope you’ll tune in to my show, “Another Fork in the Road,” which airs the 1st and 3rd Sunday evenings of every month. The show starts at 5:00p Pacific Time and runs for 90 minutes. On the fifth Sunday in a month, Julie Kintz, Host of “Quantum Leap,” and I team up to cohost a show called “Another Quantum Leap in the Road.”

 

See you “On the Air!”

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