TBI – Survivors, Caregivers, Family, and Friends

SPEAK OUT! – Bart Boughner

by

Donna O’Donnell Figurski

 

Bart Boughner - TBI Survivor

Bart Boughner – TBI Survivor

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

Bart Boughner

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

St. Williams, Ontario, Canada

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

37

4. How did your TBI occur?

I fell about 5 feet off a step ladder at work, striking my head on the concrete foundation.  It happened ~45 minutes before the end of the day…the day before my daughter’s 8th birthday.

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

The seriousness of my fall was realized about a half hour later. My leg couldn’t hold me, and I had blood coming from my ear and cuts on my wrist.

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

I was in the local hospital for about five hours. They didn’t ship me earlier to a trauma center because they didn’t think I would make the trip. They took a wait-and-see approach, since the bleeds didn’t change too much. I was in the ICU (Intensive Care Unit) for 1 week, and then I was in the Step Down Unit for another week. I was then moved back to my local hospital for 3 more weeks.

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

No

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

I had outpatient rehab for 1 year for physical, occupational, and speech therapies, then again 2 years after I was hospitalized.

How long were you in rehab?

Just over 1 year

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

Well now, I have an issue with short-term memory;  I severed my olfactory nerve, affecting my senses of smell and taste; I experience exhaustion; I have a problem with sleep; and I have no tolerance.

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

For 11 1\2 years, my life was worse to the point that I gave up. I went into a hole and rarely went out. My marriage went down hill fast, since we couldn’t communicate. My marriage ended September 16, 2013. I lost so many friends and family, some from my own choice. I found it hard to trust.

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

My energy and my love of life

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

Now I have my own independence. My kids chose to live with me. I’m letting go of the past and now living now.

13. What do you like least about your TBI?

Overwhelming situations, severe headaches, lack of patience

14. Has anything helped you to accept your TBI?

The first neuro doctor told me straight out I would be different. Also my new independence is helping me accept my TBI.

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

My injury destroyed everything, but eventually my kids had the chance to know me for myself without people telling them things. It’s the best thing that happened.

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

Yes, I became reclusive and couldn’t tolerate too many people at once. Now I’m better.

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

I am my own caregiver. Yes, I do understand about caregivers.

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

I’m building on my bucket list. I plan to continue enjoying life and laughing with my kids. Soon I will be 50. What I’ll be doing in 10 years is hard to say. I live life day-to-day.

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.

Speak for yourself, instead of letting others do it for you. Realize that the past is the past. Nothing can bring it back. Learn to laugh again and not to be so frustrated when you can’t accomplish things. Find support groups (e.g., Facebook) early.

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

Be strong. Keep your voice, and let it be known. Never dwell on things – they can put you in a deep, dark place with only a small window of light. Believe in yourself. If friends treat you differently, tell them. If they cannot adjust, then let them go on your terms. LIVE, LOVE, AND LAUGH!!!!!!!!

Bart Boughner - TBI Survivor with his children

Bart Boughner – TBI Survivor with his children

 

Thank you, Bart, 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 Bart.)

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.

SPEAK OUT! – Gill Evans

by

Donna O’Donnell Figurski

 

Evans, Gill Caregiver with Flamingoes

Gill Evans – Caregiver for her Husband

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

Gill Evans

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

Birmingham, England     gce46@hotmail.co.uk

3. What is the TBI survivor’s relationship to you? How old was the survivor when he/she had the TBI? What caused your survivor’s TBI?

The TBI survivor is my husband. He had his TBI in 1984 at age 23. The TBI was originally due to a motorcycle accident, but he has been reinjured three times since then, the last being 11 years ago. He has had one work-related injury and two motorcycle-related head injuries.

4. On what date did you begin care for your TBI survivor? Were you the main caregiver? Are you now? How old were you when you began care?

I was 22 and in full-time work. He was living with his mom. We decided to split up due to his being violent, but we continued seeing each other as friends. We got back together when I was 40 and he was 41. We married 2 years later. I have looked after him since because the last injury left him unable to work.

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

When we got back together, I had two teenage boys.

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

I work full-time, but I have 13-hour shifts, so I’m home 4 days each week. I no longer work night shifts, as he struggles with the change that causes.

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

No

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

My husband finally accepted help three weeks ago. When he had his TBI 30 years ago, there was nothing in place for him. He got speech therapy, and that was it.

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

No

10. Did your survivor have rehab? If so, what kind of rehab (i.e., inpatient and/or outpatient and occupational, physical, speech, and/or other)? How long was the rehab? Where were you when this was happening?

He got speech therapy at home.

11. What problems or disabilities of your TBI survivor required your care, if any?

He required constant prompting of his memory and calming down due to temper. He had a broken leg, so he was wheelchair-bound for a couple of weeks until he was able to have crutches.

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

I’m not really sure that I can answer this. My response probably wouldn’t make sense, as it would be “better than what, and worse than what?”

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

I miss my independence – not having to worry about my husband when I’m out or not having to walk on eggshells because he’s in a bad mood. But, as much as I miss my independence, I regret that over the last couple of years he has stopped going out unless he has to. So, I go everywhere on my own. Sometimes I wish I didn’t have to.

Evans, Gill Caregiver IMG_1130

Gill Evans

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

On reflection, not a lot

15. What do you like least about TBI?

I dislike that my husband’s last injury took him away from me and that he is like a stranger sometimes. He can forget who I am, and he will talk to me like I’m his ex-wife.

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

I’m helped by the fact that I have loved my husband since I was 17 years old. (So, I have known him with the TBI most of my life.)

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

When we married, I had two teenage sons living at home, and this became really difficult. There were lots of arguments. After two years of our fighting, my sons decided it was better if they moved out. I have spent the last eight years trying to rebuild my relationship with them, and thankfully we are much closer. Also they, to an extent, get on with my husband.

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

Not really. My husband doesn’t go out much, and I go out with my sons or with colleagues from work. The one rule I have when I am out is that, unless it’s an emergency, he is only allowed to phone me once and the rest has to be text messages. Also he is not to bombard me with texts if I don’t reply.

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

I’m hoping to be retired (or at least to be coming up to retirement) and spending some quality time with my family.

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

Evans, Gill Caregiver IMG_1129

Gill Evans – Caregiver for her Husband

Have boundaries, boundaries, and boundaries – to protect your own sanity. Remember to keep time for yourself. Don’t tolerate violence. It’s okay for you to get mad occasionally, but walk away. You won’t win a fight (verbal) with him or her. Grow a thick skin – he or she doesn’t always mean what is said. If you take everything personally, you won’t survive. Remember most of all, regardless of the effects of the TBI, your partner is still in there, so don’t give up hope of ever seeing him or her again – even if it’s only for a fraction of a second that he or she shines through. That’s why at the end of the day you are still there.

 

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

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

(Photo compliments of Gill.)

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

SPEAK OUT! – Jayson Phillips

by

Donna O’Donnell Figurski

 

Phillips, Jayson Survivor 082414

Jayson Phillips

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

Jayson Phillips

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

Houston, Texas, USA

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

2009   I was 17.

4. How did your TBI occur?

My head was run over by a car.

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

Immediately

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

A bone flap was removed, and I had brain surgery.

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

Yes. About a 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)?

Yes. I had physical, occupational, and speech therapies.

How long were you in rehab?

I was in and out of therapy, but altogether I had therapy over a year.

Phillips, Jayson Survivor Hospital 082414

Jayson Phillips – Miraclekid – lucky to be alive

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

Left-side weakness, irritation, depression, left neglect

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

I have a new perspective on life, and I don’t take anything for granted anymore.

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

Skateboarding

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

My new attitude and the support of friends

13. What do you like least about your TBI?

My physical limitations

14. Has anything helped you to accept your TBI?

I’ve been helped by personal-development videos, music, poetry, and writing.

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

Yes. It has strengthened my relationship with my mom and dad.

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

No

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

My mother and grandmother are my main caregivers. Yes, I understand what they do.

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

I hope to have a large business. I also hope to contribute my time towards helping TBI survivors and people in general better their lives. In ten years, I expect to be retired, to be living on my own, and to be going to different places to speak about TBI awareness.

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.

No matter what challenges or adversities you may come across, keep a useful and positive attitude. Always find the positives in any situation.

Jayson Phillips

Jayson Phillips

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

Attitude is everything. It can be the difference between a healthy, speedy recovery and a stressful, slow recovery.

 

Thank you, Jayson, 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 Jayson.)

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.

TBI Tales: One Usable Hand

Living With One Usable Hand

by

Dorothy Mah Poh Choo

(presented by Donna O’Donnell Figurski)

 

As a hemiplegic, I have one usable hand. It’s definitely very challenging. To carry on with life, I had to find new ways of doing things. I lost my job when I could not return to work full-time. Though I live with my children, I am home alone during the day when they go to work.

I learnt that the saying “Necessity is the mother of invention” is true. Creative thinking can find new solutions to old ways. Besides finding new ways, I also use many aids, the most useful of which is a portable trolley. With it, I can carry things around. I found a one-touch can opener, which does the job with just one press of a button.th-1

The fingers of my remaining hand can do much more than before. I can hang socks on a peg carousel with one hand. Using a peg system I invented, I hang towels and small items on an airer. (It was most frustrating trying to hang undies before that.) I still do most indoor house chores. Washing dishes is very noisy, but I do my best.

My best achievement is putting the bread clip back onto the bread bag, after an occupational therapist I asked in rehab told me it couldn’t be done with one hand. It is important to acknowledge all achievements, no matter how small.

Cutting Board with NailsI cut meat and vegetables using a special cutting board with nails in one corner to hold the item. I butter bread using a special board with raised sides that hold the bread in place. I open jars by pressing down on an anti-slip mat, which stops the jar from moving. There are mats everywhere. There is one where I eat so the plate doesn’t move around. I cook using a heavier pan so it doesn’t turn round and round from stir-frying. I use the gas burner closest to the wall so that the pan doesn’t fall off the stove onto me.

Doing things with one hand is a matter of breaking the activity down into individual steps. For example, to put a cup into the cupboard, I open the cupboard door, get the cup, then put it into the cupboard. Before I had only one good hand, I would just take the cup, open the door with one hand, and put the cup in with the other hand.207041972

Of course, some results won’t be as good as they would be using two hands. I have accepted that and learnt to laugh at myself. Folding clothes takes double the time now and results in a messy pile. Wrapping presents is a sloppy task. After I lost my left arm, I wrapped presents for the last time at the end of that year. I handed the “wrapped” presents to my friends saying, “Sorry – not my best effort. It’s a one-handed job”. LOL! Life is better when you are laughing.

Doing things with only one hand takes a lot of patience and determination. I keep trying until I do it. I’m also very safety conscious. If I can work out in my mind to do something safely, I will do it. Waiting for someone else to do something can be quite frustrating. (I don’t like sitting on leather chairs – it’s cold. I had an old doona on the electric recliner I sleep in. It kept slipping off, and it annoyed me terribly. I had the brilliant idea to sew one end so it would slip over the chair like a cover. I asked my daughter to do it, but she was very busy, and the days stretched on. I got up one morning, helpplanned everything in my head, took some measurements, threaded the needle using a needle-threader, and off I went. The work took four hours, but I did it. My daughter didn’t notice it for weeks, until I pointed out that she didn’t need to do it for me anymore. She was impressed.)

Most things are possible if you put your mind to it. If something is truly hard, ask for help. It is not worth it to get hurt.

I have learnt that success is just one more try after failure. Life is worth living. Don’t give up.

 

Thank you, Dorothy, for sharing your story in TBI Tales. I hope that your experience will offer inspiration to my readers.

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

 

If you have a story to share and would like to be a part of the SPEAK OUT! project, please submit your TBI Tale to me at donnaodonnellfigurski@gmail.com. I will publish as many stories as I can.

(Clip Art compliments of Bing.)

 

As I say after each post:

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On the Air – Brain Injury Radio

Julie Kintz sits in for Donna O’Donnell Figurski

Mark Ittleman, MS CCC-SLP, speech & language pathologist

 images-1

Due to a prior engagement, I was unable to host my show, Another Fork in the Road on the Brain Injury Radio Network on October 19, 2014. Fortunately for me and all my listeners, Julie Kintz of Quantum Leap stepped into her host shoes and interviewed a very interesting guest. Mark Ittleman, a speech and language pathologist, spoke of the many difficulties brain-injured survivors encounter after their injury. I will be back on November 2nd with Dr. David Figurski, (my spouse) who will give his perspective of his life as he conquers traumatic brain injury.

Mark explained his philosophy of therapy (it should be doable, interesting, and enjoyable), his methods (analysis, repetition, and modeling), and his strong desire to involve the caregiver (by his or her presence in the sessions, by learning from him, and by his writing simple-to-understand books – he’s working on one now). Mark cautioned survivors to get more than one prognosis because a prognosis is only a doctor’s opinion and because survivors are often more capable than people realize. Mark understands the power of the ability to communicate and suggested that survivors – even years after their trauma – can benefit from having a speech therapist.

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 2nd and 4th Sundays at 5:00p Pacific Time, Julie Kintz hosts Quantum Leap. When there is a fifth Sunday in a month, Julie and I will team up to cohost a show called Another Quantum Leap in the Road.

See you “On the Air!”

(Click the link below to listen to the show.)

Julie Kintz interviews Mark Ittleman M.S. CCC/SLP. Mark will address speech difficulties after brain injury in both children and adults.  

YOU ARE INVITED!

 

putthis_on_calendar_clip_artJulie Kintz of “Quantum Leap” will be substituting for Donna O’Donnell Figurski of “Another Fork in the Road” on the Brain Injury Radio Network.

Julie’s guest will be Senior Speech Language Pathologist-Author Mark A. Ittleman, M.S., CCC/SLP. Mark Ittleman will discuss speaking difficulties and tell how loved ones can help improve the speech of their survivor at home in a fun and easy way.

Come One! Come ALL!

(NOTE: New Day, Sunday – Same Time)

What:        Host, Julie Kintz of “Quantum Leap” substitutes for “Another Fork in the Road” host, Donna O’Donnell Figurski.

Why:         Hear Mark A. Ittleman, M.S., CCC/SLP discuss speaking difficulties.

Where:     Brain Injury Radio Network

When:       Sunday, October 19th, 2014

Time:         5:00p PDT (6:00p MDT, 7:00p CDT, and 8:00p EDT) 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.)

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.

David Figurski…I assembled Donna’s new office chair. It came as 12 pieces with 13 screws. The Allen screws made it possible to use my non-ataxic left hand. Because the instructions were written with two good hands in mind, I sometimes had to devise my own way of assembling the parts. It took me twice as long, but I felt good about doing it.

Jodi Mannon…I was hit and thrown down stairs in January by my ex-roommate. I don’t remember a lot in the past 8 1/2 months. Yesterday I became friends with a lot of people who also have a TBI. I spoke with one on Facebook Messenger for a couple of hours. We chatted for a moment today, and he is going to call me tonight. I was shocked! He made me truly happy for once because we were able to talk the way we did and share our lives. I haven’t done that with anyone because I’ve never even thought about it before. I just had a lot of issues in dealing with getting better. It’s the greatest feeling to have people who have been through the same thing understand me!! Not that my parents and friends haven’t been nice, but they just don’t understand the things I go through. My new friends do. I feel so blessed to have them in my life, and I look forward to keeping these new friendships for the rest of my life!!!

Carmen Gaarder Kumm…I passed the test that allows me to keep my job!!! I needed a 70, and I got 73.7 – not much, but I PASSED! Better yet, I found my car after going out a different door than the one I went in. (Also, I was parked on the street in a college city that I’ve only been to once before.) I walked around for a half an hour looking for it – but I was still within 2 hours! LOL!

YOU did it!

Congratulations to all contributors!

(Clip Art compliments of Bing.)

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