TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘TBI’

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.

Alicia Gilman (survivor)…Five years out from my stroke, I’m again trying occupational therapy for my hand. The neurologist actually discouraged me from trying and said not to expect any improvement, but I’m trying anyway. I picked up 25 foam balls and put them into a crate with e-stim (electrical muscle stimulation) assistance, but still it’s more than I’ve done in 5 years. Yay, me! I like my neurologist a lot. I’m sure he meant well when he told me that, but I’ve decided that no one will put limits on me – not even an awesome doctor with lots more education than I’ll ever have. I would rather hope for the best, expect the best, and receive what the good Lord decides He wants for me, than not to try and fall victim to apathy – just because my doctor said it’s not worth the effort. It is ALWAYS worth the effort! Thank you for doing what you’re doing here. It is great encouragement.

Debbie Madison (survivor)…I allowed myself a break during the craziness! Took a nap when I became overwhelmed. I think my Itty-Bitty Giant Step is to remember to listen to my body and give it a break. If I don’t, the results can be catastrophic!

Lessia G. Malloy  (survivor)…My new doctor actually added some fish oil to my diet. I do feel better.

Tracy McDonald (caregiver)…I told you all several months ago that my 27-year-old son, Charles, decided to get off the Duragesic pain patches. Well, before he discontinued the patches, he weighed 118 lbs. on his 6 ft. 1 in. frame – very underweight. He just weighed himself before showering and hollered, “Mom! My weight is now 135!” The worry of his low weight had been a great concern of his doctors. To know that Charles made the choice to stop taking that patch and now endures more pain – I am very proud of him. He wears long thermal underwear under his jeans to help with pain. He meditates. He is able to walk for hours out in the woods with his dog Cali. His agitation is less now too! I just wanted to share with my friends here. It has been 5 years since his accident. A big accomplishment – always believe!!

Lc Sossaman  (survivor)…Today I had two things to do – one was for my husband. I didn’t write them down and didn’t take a note, but I remembered them, so it was a good day. I got goat food, but that was an easy one to remember. I could remember goats – it was easy – they are my pets. My husband asked me to get a certain bucket and remember to get the lid. I did. Woo, hoo! I know it sounds so small, but not writing it down and actually doing it was good for me. Just a piddly thing, I know.

Kimberly June West (survivor)…I have been working on the “ab and butt” challenge. One of the exercises is lunges. Two years ago, I could not have done one lunge without losing balance and falling. I did 15!!! Yay, me!!

YOU did it!

Congratulations to all contributors!

(Clip Art compliments of Bing.)

Survivors SPEAK OUT! . . . . . . . Anthony Vigil Jr.

SPEAK OUT! – Anthony Vigil Jr.

by

Donna O’Donnell Figurski

About a week after waking from the coma.  I had dropped down to 76 lbs!  Both legs were amputated, btw.-11. What is your name? (last name optional)

Anthony Vigil, Jr.

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

Guam

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

July 2011    I was 31 years old.

4. How did your TBI occur?

I was in a traumatic car accident while on my way to train for my 2nd half-marathon.  I was an avid long-distance runner, had completed my first in 1:39, and was training to come in under 1:30 for my 2nd.  The accident also resulted in the loss of both legs above the knees.

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

I realized I had a problem when I started studying for the LSAT (law school admission test) during the summer of 2013.

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

I was in bad shape – both lungs were collapsed, and my kidneys, liver, and gallbladder failed.  There was much more that I don’t remember.  I was lucky that my accident was less than a mile from the US Naval Hospital, where many doctors there were previously stationed in Iraq and Afghanistan and had experience with the kind of trauma I suffered.  I was eventually transported to St. Luke’s Hospital in the Philippines, where they had a brain drug that is not approved by the FDA (Food and Drug Administration), but is used in Europe and Asia.

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

I was in a medically induced coma for one month.

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

I was in physical rehab, both as an inpatient and an outpatient, for about two months. Then I decided to complete it at home. It took two years to fully recover physically. I’m still working on the cognitive aspect.

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

The doctors told my parents that I would have the mind of a child, but luckily that didn’t happen.  When I was being tested in the Philippines, I couldn’t even draw a clock, my speech was slurred, and I didn’t know what year it was or how old I was.  I did know who all my family was, though.  I still have trouble reading dense passages and have to reread them just to comprehend.  Because my short-term memory was affected, I have trouble keeping track of concepts in dense passages.

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

For the better – my relationship with my parents is so much better.

For worse – it has quashed (or at least delayed) my aspirations for a professional degree (law or MBA).

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

I greatly miss my processing speed.  I used to be very quick to pick up new concepts, and many people thought I was smart. (I guess they still do.)

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

I enjoy relationships with people.  I’ve realized that relationships are more important than money.  I also try to enjoy life in every little thing I do.

13. What do you like least about your TBI?

I dislike knowing that I’m not as capable as before, but I’ve finally arrived at peace with that.Vigil Jr., Anthony Relay Race Pre TBI

14. Has anything helped you to accept your TBI?

I’ve been helped by reading other people’s stories and by learning how people were able to succeed despite the TBI.

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

For the first two years, I hated being stuck at home with my parents again, after I had been living on my own since 19.  I’ve finally come to enjoy and appreciate my parents.

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

I didn’t have much of a social life before the accident, so not much has changed.

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

During the first year of my recovery, my mom was my caregiver.  Yes, I understand that it takes a lot of love, even though you may not understand why things happened that way and even if the other person fights you the whole time.  =)

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

I was approved for a business loan a week before my accident, so I hope to resume that plan and maybe get a professional degree.  That’s a big maybe.

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.

Try working or really exerting your mind.  You won’t really know your capabilities until you try.

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

Research, research, research.  Reach out to other survivors, for no one else knows what you are experiencing.  I tried explaining it to my coworkers and parents, and it was impossible for them to understand!Vigil, Jr., Anthony

 

Thank you, Anthony, 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 Anthony.)

 

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)…I found my old horse this past month. I haven’t seen him since 2004. Today (yeah!) I remembered I can scan pictures to send to the new owner. Yesterday I tried the camera – not so good. I love days like today!

Bart Boughner, 2 months after TBI, poses with his horse.

Bart Boughner, 2 months after TBI, poses with his horse.

Ever So Dirty, aka Hannah and Rightly Zipped, aka Bubba

Ever So Dirty, aka Hannah and Rightly Zipped, aka Bubba

The big one is my old mare, Ever So Dirty, aka Hannah. She had two babies for me. The one I just found is the little one, Rightly Zipped, aka Bubba.  I still have the sister, and – funny thing – they were born on the same day, two years apart, and with the same parents.

Olivianjeana Collazo (caregiver)…Our biggest accomplishment has been finding fish oil and other things to help our son with his brain injury, which happened in July. All that the doctors could say was the worst. I can’t wait to show them our son now. He is doing half the things they said he wouldn’t! Thanks for reading.

Peter Cornfield (survivor)…Peter uses innovative measures to move a basket of firewood to the fireplace using only one hand. See his inspirational video on You Tube. Moving Wood With My Stick.

Jamie Fairles (survivor)…Hi, Donna. As of yesterday, I’m off for four weeks from my B SW (Bachelor of Social Work) field practicum placement until my second term begins in the new year. I have the rest of this practicum to finish, a second field placement, and only two more full courses until I’m a social worker!

 Heather Sivori Floyd (caregiver)…BIG NEWS to share! Kinda nervous to share but really excited! Had a meeting with a few people from Brain Injury Alliance of Kentucky today. They have written something for bicycle helmet legislation for children. It will be called TJ’s law!! Very exciting! Now to get the right people involved to get this thing passed.

William Jarvis (survivor)…Donna, a big step for me was moving. Five months ago, I thought it would be impossible, due to my TBI and walking with a cane. However, I am now in my new home in Myrtle Beach. I got a lot of support from family and friends. You can do more than you think! Don’t be afraid to try things.

Debbie Madison (survivor)…I went to my first Christmas party, and I didn’t hide in the bathroom! It wasn’t so bad, and I had a nice time with my husband.

Debbie Madison (survivor)…I finished the shopping, and I sent out cards without losing addresses or the list.

Julie-Ann Manners (survivor)…It’s Wednesday here in Oz (Australia). I just got out of the hospital on Monday. [I was in due to my epilepsy from my ABI (acquired brain injury).] And this is HUGE FOR ME. I have finally been put on the list for rehab for fine motor control, speech, walking, reading, and writing!! Eventually I will be able to start being me again!! I’m so super excited!! My injury happened this year in February, and I have had no help, and now after Christmas, I am finally going to be able to get some! YAY!!!!

Michael Montepara (survivor)…Okay, here’s one of my Itty-Bitty Giant Steps: I am thankful that this week I did not have to sleep in my truck in the cold. AMEN.

Shanna Wolf Heart Powell‎ (survivor)…I accomplished grocery shopping tonight with out a break down, except for the pig head they were selling at the store!!! I broke down and cried in Walmart!!!

YOU did it!

Congratulations to all contributors!

(Clip Art compliments of Bing.)

On the Air: Brain Injury Radio Interview with Christian Jungersen author of “You Disappear”

On the Air: Brain Injury Radio

Interview with Christian Jungersen

author of “You Disappear”

images-1IMPORTANT NOTE: Because of technical difficulties with sound, the interview starts at 14:20. Just drag the audio to that spot and start listening.

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You Disappear by Christian Jungersen

Folks, I had an amazing interview with Christian Jungersen, author of “You Disappear.” Christian’s story jumps on the rollercoaster life of a man who has a brain injury. Frederik’s slow-growing tumor is wreaking havoc in his and his family’s life. The book is a great read. The interview is a great listen. Don’t miss out on either.

Christian’s very poised and professional interview was conducted at 2:00 to 3:30 am from his home in Malta, an island in the Mediterranean Sea.

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Christian Jungersen

You can get to the interview by clicking the link. (Wait a few seconds for the audio to start.) Because of technical difficulties with sound, the interview starts at 14:20. Just drag the audio to that spot and start listening.

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.”

REMEMBER: Because of technical difficulties with sound, the interview starts at 14:20. Just drag the audio to that spot and start listening.

See you “On the Air!”

Interview with Christian Jungersen

Click here for a list of all “Another Fork in the Road” shows on the Brain Injury Radio Network.

“Another Fork in the Road” . . . Brain Injury Radio Network Interview with Christian Jungersen, author of “You Disappear”

YOU ARE INVITED!

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Christian Jungersen, author of “You Disappear” takes his readers on the twisted journey of Frederick, a headmaster at a prestigious school; Mia, his wife and a reputable schoolteacher; and their teenage son, Niklas as they are caught in the web of brain injury.

 

Come One! Come ALL!

What:        Interview with Christian Jungersen, author of “You Disappear”

Why:        Hear Christian talk about his book, “You Disappear” and take a glimpse into the life of a TBI Survivor and his family as they maneuver through the TBI maze.

You Disappear by Christian Jungersen

You Disappear
by
Christian Jungersen

Where:     Brain Injury Radio Network

When:       Sunday, December 7, 2014 (Special Announcement: It’s my birthday. Bring thumbnail-1

Time:         5:00p PT (6:00p MT, 7:00p CT, and 8:00p ET) 90 minute show

How:         Click: Brain Injury Radio Network

Call In:    424-243-9540

Call In:     855-473-3711 toll free in USA

Call In:    202-559-7907 free outside US

or SKYPE

If you miss the show, but would like to still hear the interview, you can access the archive on On Demand listening. The archived show will be available after the show both on the Brain Injury Radio Network site and on my blog in “On the Air.”

(Clip Art compliments of Bing.)

Survivors SPEAK OUT! – Bob Bernardi

SPEAK OUT! – Bob Bernardi

by

Donna O’Donnell Figurski

 

Bob Bernardi

Bob Bernardi

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

Bob

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

Wheeling, West Virginia, USA

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

My TBI happened in 1992 at the age of 35.

4. How did your TBI occur?

Car accident

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

It was first realized while I was in the ICU (Intensive Care Unit).

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

I was put on a respirator at the scene of the accident because I stopped breathing. My chest was crushed, and my back was broken in half at my T6 vertebra. My spine was bruised, and I had a traumatic brain injury. My lung collapsed three days later.

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

I was in a semi-coma for about six days.

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

I was in the hospital for almost 7 weeks. Then I was in outpatient rehab from May until February. In that time, I had physical, work, and speech therapies.

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

My whole life changed on that terrible morning. I had to relearn all of my simple math skills and redevelop my short-term memory. I slowly regained my ability to walk. My attention span has been diminished, and I go into a deep depression at times.

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

Bob Bernardi

Bob Bernardi

My life is much worse. I was never able to regain my executive skills or my position as a Regional Human Resources Manager. I am 100% disabled today and feel as if I am a warehoused individual. A diabetic hypoglycemic reaction caused my car accident, and since my accident, my condition has worsened to the point that I am now very brittle. In 2009, I applied for 100% disability, and, in 2010, it was granted. I now depend on a small Social Security check and my wife’s pay. Our whole lifestyle has changed because my earning potential was eliminated. Seven years ago, I was diagnosed with celiac disease and also with brain meningiomas. In May of 2014, it was determined that I needed Gamma Knife brain surgery to stop the growth of the meningioma. So far, the surgery has been deemed a success. I now live day-to-day and do my best to enjoy life the best way that I can. I feel that my best therapy is talking to friends on the Brain Injury Awareness Group on Facebook and giving and taking advice on making our lives more bearable. I try as often as I can to inform and educate people on Traumatic Brain Injuries, how best to avoid them, and, if they do occur, how to deal with this tragic occurrence in life.

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

Work. I was diagnosed with having a Type 1 personality, and so my mind is always trying to work at accomplishing things.

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

I enjoy helping others cope and giving encouragement to others who have injured their brains.

13. What do you like least about your TBI?

I dislike the stigma attached to me that I am slow or stupid.

14. Has anything helped you to accept your TBI?

Not really, but, when I look at others who have suffered this terrible happening in their lives, I feel lucky at times because I came out better than a lot of my survivor friends.

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

My injury has put all of our financial burden on my wife, who is in constant worry both for me and in handling her “management” position. She is stressed to the maximum.

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

My social life is not too bad because when others look at me, they really do not know. I have some scars on my forehead, but you really have to look, and I have no problems with speech. I may repeat myself at times, but I know how to keep my conversations in check. I have no problems today walking or doing physical activities, but I will tire more easily. Many have no idea what my physical body has gone through. I have always kept a small circle of friends. Probably the worse aspect of my TBI is that many have left me because they all want the “Old Bob” back. I would love for the “Old Bob” to come back, but he is gone forever.

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

My wife has always been there for me. After 22 years, she is worn out, and her health is beginning to fail.

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

I do not plan ahead anymore. I do one day at a time. Ten years from now is just too far away. I keep getting all of these health challenges, and that keeps me busy enough.

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 learned that, if I need to remember something, then I must tell myself to remember it. I almost curse myself to remember and not to forget. So far it has worked. I also would like for people who have suffered with TBI, or BI in general, to not always write in stone what the doctors tell you. The human brain is more capable than even they know, and the healing process never really stops. I just had cognitive tests done, and I only scored “fair” on almost all of them. I was somewhat down, but I started thinking how I handle things in real life situations, and I can do a lot. I even do our own taxes every year. I am an avid reader, and I do word puzzles to keep my brain active. I refuse to give up. The bottom line is DO NOT GIVE UP ON YOURSELF!

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

I honestly think that TBI is one of most evil happenings that a person can go through because it alters how one thinks, one’s personality, and his or her life in general. I would suggest for anyone who has gone through this personal hell to hook up with others – either online or in personal groups – so as to talk about your different problems and to share feelings – both negative and positive – so as to help one another cope.

Bob Bernardi

Bob Bernardi

 

Thank you, Bob, 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 Bob.)

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.

Beckie (caregiver) and Jerry…An Itty-Bitty Giant Step from a spouse’s viewpoint:

I’m learning to ease off. He is still a man. He can do and think for himself – just differently. And when I do NOT micromanage, we both are better. (P.S. TBI still sucks.)

Joyce Benavidez (survivor)…Today was the anniversary of my twin birth/death. Thanks to the wonderful support and encouragement I have on Facebook, I made it through my first year without a seizure.

Sara Catherine Birch (caregiver)…My husband managed several days last week without a daytime nap. Yesterday our daughter kept him from sleeping after a shopping trip, but he still managed to make it to bedtime without shouting at any of us. Very happy.

Joey Buchanan (survivor)…I’m getting the leaves out of the pool.

Joy Cameron (survivor)…I survived (LOL). It was a hell of a week, and I am still here, fighting and putting one foot in front of the other.

Natalie Elliott (survivor)…Here’s my Itty-Bitty Giant Step: I survived Thanksgiving with family. I put the tree up, but I had to put it together four times because following a sequence is taxing and very difficult.

Debbie Madison (survivor)…I survived Thanksgiving without killing my brother! And I had a great time!

Gena Marie (survivor)…I flew on an airplane for the first time and did OK. I never thought I would make it safely, but I did.

Joshua Puckett (survivor)…Despite being engulfed by a lot of the flooding feelings this week, I was able to maintain calm throughout. I never went St. Helens. So progress. That’s my Itty-Bitty Giant Step.

Kimberly June West (survivor)…I went on a trip and didn’t have a panic-attack!!

Sandra Williams (survivor/caregiver)…I had a successful IEP (Individualized Education Program) meeting. I fought back so many flashbacks and tears. When it was over, the staff said they couldn’t even tell if I was nervous. I still battle negative thoughts, but I ate two meals today – so huge for me since I wasn’t eating but a few times a week!

YOU did it!

Congratulations to all contributors!

(Clip Art compliments of Bing.)

 

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.

Roy Anthony (survivor)…I broke off a toxic relationship that has taken a good part of me. Now is the start of gaining my life back.

Wendy Coulter (survivor)…I went outside into my front yard without a cane! First time since the accident in March!

Sherrie Crusha (survivor)…I put in a back door with only hand tools.

10678844_389594007862776_6836148097400106876_nLaura Doughty (survivor)…Saved a dog. He is a stray. Really cut up. Scares really easily. No doubt he has been abused. He needs love and care. It was the right thing to do. He is a boxer – named after the boxer, Jack Dempsy. Dempsy is happy here.

Dunton IV, George FrederickGeorge Frederick Dunton IV (survivor)…My big accomplishment for the week was being able to babysit three very young kids for 3 hours.

John Hatten (survivor)…Well, Donna, I’ve been working with HOPE Beyond Trauma (www.HOPEBeyondTrauma.com) to build a new service for Survivors of Brain Injury, an online teleconference/teleseminar/support group. We plan on starting before February (the gods being willing). It’s a pretty big step for a survivor of a serious brain injury.

Kelley (survivor)…My big step is helping others. We all were snatched from death for a reason. My reason is to help others. My estranged, alone father needed to be put into a home and get care. I found him one of the best in our area that takes a couple of Medicaid patients. He gets the best care, and I can visit him almost every day, since I put him so close to me. He has dementia, and so do I (but not as bad as he does). I am able to give him cognitive exercises, since I had rehab for over a year and know them very well. His nurses say he’s getting better all the time. I forgave him and am his only guest and caregiver. What I’m accomplishing makes me feel good.

Carmen Gaarder Kumm (survivor)…Today’s test – I passed with flying colors. My car slipped into a ditch. I didn’t panic, couldn’t get out, didn’t panic. I called my husband. He got me out! I didn’t cry; I didn’t yell; I kept my head! Yay!

Susie Farrell Mayowski (caregiver)…My daughter actually wanted a hug and had a smile on her face tonight. I was almost in tears with that.

Grant Mealey (survivor)…Hi, Donna. OK, so I learned this week that when my voice escalates, it causes heck to break loose. So, it’s apparently up to me to keep things calm by leaving for a while before a problem happens. I’m a little nervous, since I am neither quiet nor mellow. I have been working on this for a few days and seem to be doing well. I have learned I can voice concerns over things, as long as I remain calm. OK, it’s a big step forward, and I can do this. No one deserves to be yelled at.

Michael Montepara (survivor)…My Itty-Bitty Giant Step for today was actually waking up, getting dressed, and having at least one cup of coffee. For me, that small accomplishment is a lot harder than one would imagine.

Michael Montepara (survivor)…My Itty-Bitty Giant Step accomplishment is getting outdoors in bitter 16-degree cold, starting and de-thawing my poor truck, and taking my friend to his uncle’s house a few towns away. For me, movement in cold mornings is extremely difficult! Stay warm, be well, and smile a little smile today.

Shanna Wolf Heart Powell (survivor)…Last week I went Christmas shopping – first time since my TBI (approximately two and a half years ago)!!! I forgot what I was doing once, but I didn’t panic, and I didn’t stress!! I dominated the situation!!! But, I do have to do a return/exchange tomorrow!!! I got one item wrong!!! Not bad, considering, I guess!!

Scott Sheehan (survivor)…Eighty-four hours of world peace. No hate or anger, and I will play any song for anyone in the world during my record-breaker. Ambitious? Thanks to you, even more so now. As support grows, so does the ambition. Got my first sponsor. The focus it takes makes me a blithering idiot. My speech and vision are affected. Learned to play blindfolded. Been called a retard thousands of times. And I open up to you now because “it’s time” (the name I always wanted to call a band). But it’s time, to make Ma and Dad proud. And save the world. And no better time than my 50th birthday. Hahaha. An old guy. Doing the impossible. With a traumatic brain injury, no less. I know this is long. Understand this is huge. And now, you are a part of it. Hour 85, I will probably die. But not until then. For Ma, Dad, Milo, and you and to save the world! A lot of work to do in the next 13 months.

Laurie Whyte (survivor)…I realize what depersonalization means! I’ve been a chameleon since my injury – just doing what everyone else does or asking for advice all the time. Or over-sharing. Not really knowing my own mind. It’s been 9 years, and I’m starting to think for myself.

YOU did it!

Congratulations to all contributors!

(Clip Art compliments of Bing.)

Survivors SPEAK OUT! – Ali Stretmater

  SPEAK OUT! – Ali Stretmater

by

Donna O’Donnell Figurski

Ali Stretmater1. What is your name? (last name optional)

Ali Stretmater

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

Rockville, Maryland, USA     alicat012003@yahoo.com

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

I’ve had four TBIs: the first was at age 3; the second, at age 4; the third, at age 30; and the fourth, at age 37.

4. How did your TBI occur?

All four of my TBIs were due to blunt-force trauma. TBI #1 occurred when a friend went to hug me. I fell back against the hard wooden arm of a recliner and cracked my skull open. TBI #2 occurred when I fell from the monkey bars while playing on them. The details of TBI #3 are still sketchy to this day. Just before surgery, I fainted in the hospital from debilitating pain due to a spinal cord issue. I struck my head on the corner of a filing cabinet and then again on the floor. TBI #4 was due to an assault. I was unknowingly drugged in my own home. It’s believed that I passed out and struck my head on the bathroom sink. The details surrounding TBI #4 are still unclear. The only witness isn’t an especially reliable source, as that witness is also the assailant.

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

I was 32 years old and had sustained three TBIs by the time I was finally told I had a TBI!! My neurosurgeon and neuropsychologist were the ones who finally explained to me that I wasn’t crazy and that my behavior(s) was perfectly normal for a TBI survivor. Until then, I had no clue that I had a TBI. When I was growing up, it was common for doctors to “spare” the parents of a TBI-child by not telling them anything at all about it. I wish I knew I had a TBI when I was growing up. It could’ve saved me a lot of difficulties with school, work, life, etc.

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

For the first two TBIs, I was taken to the hospital. For TBI #3, I was already in the hospital. For TBI #4, I had no treatment for at least a week. I wasn’t able to schedule a visit with my neurologist until then. That appointment was at the insistence of another doctor whom I ran into a few days after I had TBI #4. That doctor was alarmed by my behavior. (I was in a complete blackout from TBI #4 and unaware that I’d had yet another TBI.) The doctor called my neurologist and made an appointment for me.

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

Thankfully I never went into a coma from my TBIs. After TBI #3, I was in a medically induced coma for a few days. That was due to a spinal cord surgery. Because of the risk of paralysis, I had to stay completely immobilized. (The paralysis thankfully didn’t happen.)

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 had physical, occupational, and speech therapies after TBI #3. I had rehab as an inpatient for a month and as an outpatient for the next 3–6 months. (It’s hard to remember exactly how long I was an outpatient.)

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

I have vertigo, depth-perception issues, impulse control issues, moodiness, word-searching issues, insomnia, severe short-term-memory issues, overstimulation, etc. TBI #4 made all the symptoms worse, and it wiped out my short-term memory as well. It’s even hard to remember all the symptoms and issues I have from the TBIs.

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

Being a 4-time survivor is my greatest blessing and also my biggest curse – all at the same time! I almost died twice. That and knowing that TBI is about “forever” really changes your perspective. Forever is a very long time!

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

That’s hard to answer. I can only vaguely recall a time when I didn’t have a TBI. I guess I miss my career. I loved my job and my colleagues. It was devastating for me when I was told that I would have to retire and that I wasn’t ever going to be medically cleared to return.

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

I appreciate being given a second chance at life and love. By rights, I’m not supposed to be alive to begin with.

13. What do you like least about your TBI?

I dislike being exhausted all the time, the insomnia, not being able to return to work, and the stigma that comes with having a TBI. I often tell people, “I have a TBI; I’m not simple. There’s a HUGE difference!!”

14. Has anything helped you to accept your TBI?

I have been helped by talking to other TBI survivors and by knowing that what we go through is normal – that I’m not alone in this.

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

Yes!! I can’t begin to explain how it’s changed everything!! Family members treat me very differently. They don’t understand, since they haven’t lived it.

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

Yes!! You name it. For a long time, I was very isolated. Old friends didn’t understand how much my world had changed. It was (still is) hard to get out sometimes because I’m always so tired. I’ve had romantic relationships break up. My current boyfriend is always harping on how it was before I had TBI #4.

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

As an adult, I’m my own caretaker. When I was a child, my main caregiver was my mother. But, she didn’t realize the lifelong impact that the first TBI had (and still has) on me.

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

Good question. I just want to live a peaceful life and help other TBI survivors when I can, especially new people. I’m in the process of realizing a lifelong dream of moving to Miami Beach, and I’m working (slowly, but that’s okay) on a new career path of fitness- and nutrition-coaching. I’d love to work with other TBI survivors, since we have a statistically higher risk of getting diseases like Alzheimer’s, etc. as a result of having a TBI. Studies seem to show that being healthy can lower this risk. I’d love to re-marry again too, but any future husband would have to understand (as best he can) that I have a TBI and that he is aware of what that entails.

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’ve had both front and back TBIs, as well as open-head and closed-head injuries. One thing I’ve learned is that, when it comes to remembering things, develop strategies to make it easier (like reminder apps on your phone or putting things like keys in the same place each time, so they’re readily visible and you’ll have a starting point to look for them when you need them).

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

YOU ARE NOT ALONE!! The biggest key – and the best therapy – is talking to other TBI survivors. Just knowing that someone else understands what it’s like without a lengthy explanation is priceless. Reach out to others, and remember that, by sharing your story, you’re also helping someone else who’s struggling.Ali

 

Thank you, Ali, 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 Ali.)

 

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.

Karen Hubbard Allen (survivor)…I have an Itty-Bitty Giant Step story. I just suffered another hard blow – to my forehead this time. This will be my third concussion. I fell backwards on ice in 2008, hitting my head. November 18th is when I had the most recent one. It proved to me that the brain controls different things. I just started up with a heel issue, called plantar fasciitis. Getting out of bed in the morning is when the pain hurts the most. I got out of bed, and my knee buckled, causing me to fall into the dresser and the wall and hitting my forehead. I have been a smoker since 2003. Well, whatever part of my brain I hit this time – I no longer smoke; it makes me sick. Sad that this is what made me quit smoking. Yet, it’s a big accomplishment for me.

Derrick Roy Clements (survivor)…I did a Snoopy dance today when I left the eye doctor. I was able to ditch the prism glasses and go to regular glasses. I was also told that they would not be doing any more surgery on my eye orbital and that the plate they put in for it was good. I have permanent nerve damage, such that when I look down, my vision will always be double. One step closer. What everyone, including me, will know is the “final” new me. I still can’t drive yet, but in time I hope to. I know I will never be able to drive an 18-wheeler again, but I am OK with this. I just want to ride my Harley-Davidson, for my heart longs for this. I feel free and alive when I ride. But, today was a victory, and the fight continues. Strength to all.

I live by my motto – Never give up, and never give in.

Natalie Elliott (survivor)…I watched a movie with subtitles. My brain was exhausted afterwards, but I watched the whole thing.

10805531_10152948796301834_531981836_nJo Emery (caregiver)…Luke built me some bookshelves for our lounge room. I designed what I 1502486_10152948796241834_3069128791965391225_nwanted, gave him all the measurements needed, and worked out the timber required. He bought the timber, cut the shelves, and put it together inside, as it was so big. It took about two weeks for him to make it. I love how it turned out, and Luke is very pleased (as he should be). He loves his woodworking and has great ideas, although the difficulty he has is going from his ideas to carrying them out.

Monica Rowe Foutz (family member)…My mother-in-law, Wanda McGuffin, is 5 months post TBI. Today she stood from a seated position without using her hands. It’s itty-bitty to some, but it’s huge to us.

Barb George (survivor) Alrighty! I have been working with an old friend to develop a “Different-Ability Walk, Roll and Stroll.” We have a date (May 16, 2015, in Hoquiam, WA)! I’m VERY excited. It was put together by Grays Harbor Brain Injury Support Group and ME, their insane leader (grin). We have had GREAT response already!

Orpha Harber-Blanchat (caregiver)…I’m happy to report my husband gets his G-tube out tomorrow. His accident was on June 25th. He was coming home from work and was hit by a semi that didn’t stop at a red light. David was in a self-induced coma for 30 days and in hospitals for 80. He is now at a rehab center doing well.

Richard Johnson (survivor)…Shoveling snow…I hate it, hate it, hate it. But I did it, did it, did it. Monday night and Tuesday morning.

Carmen Gaarder Kumm (survivor)…I spent a day at a craft retreat with friends this weekend, and then I came home. I worked three days, and then I cleaned the church the next day. I’m proud that I didn’t have a meltdown.

Michelle Casto Lyons (caregiver)…An Itty-Bitty Giant Step accomplishment: my hubby has been seizure-free for 7 days, AND he made dinner TWICE this week!

Sandra-Madden-Hearts-All-Around-us~~element78Sandy Smachetti Madden (survivor)…I am a published author. My book shipped from the publisher today!! Check it out. Hearts All Around Us. Thanks!!

Corina Mendoza (survivor)…My Itty-Bitty Giant Step is a major step in a positive direction for me. I started my teacher certification in Special Ed, with a focus on blind/visually impaired students and family/consumer sciences for my degree in Hospitality Management.

Scott Sheehan (survivor)…I am building a soundproof fort for my female rescue cat. I also bought a drum set after 6 years of pain, and I am going to train to break a record – 84 hours of play. Gotta take step one. That I’ve learned. Besides being hit by a car three times, having my head smashed into a pipe, and diving into a 4-ft. pool, I walk, talk, and basically defy death EVERY day. (The doctors said that the same injury took Christopher Reeve.) My 18-month rescue cat, Milo, dropped dead in front of me and Babie, his sister. That pain makes the rest nothing. I bought a drum set with his colors and dedicate this to him. Now it gets hard. I play like no other – in a way that “can’t be done.” I’m always underestimated because of my TBI. Now the impossible – 1600 songs with the focus to spin and flip a stick every beat. In front of millions, billions, I hope. The best show ever played! Ambitious? Ha! Easy! The training, choreography, and practice – that’s the hard part. Always said they will laugh and say you can’t do it. But, do the impossible. You are special. Here to change the world. For 84 hours.

Lc Sossaman (survivor)…Every day is a challenge. I went to the grocery store and got the two things on my list (LOL), cleaned the house, and fed the goats and animals. I woke up to snow, but I was still able to get these things done. Cold days are usually hard on me, due to arthritis in places after the wreck, but today went fine. I try to keep discouragement and negativity away.

Amanda Spencer (caregiver)…Ed and I are celebrating 1 year together today!

Danielle Virden (caregiver)…Mine is about my 2-year-old son. Nathan started saying “mommy” and laughing, and he’s learning to sit up.

Sandra Williams (survivor)…I just learned that my organization and memory increased from very low to 90th percentile. The therapies paid off! I still struggle with perception and cognition, but I am working on that too.

Next goal is to begin running again. I want to run a marathon.

YOU did it!

Congratulations to all contributors!

(Clip Art compliments of Bing.)

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