TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘tinnitus’

Survivors SPEAK OUT! Ventura Manzanares

Survivors SPEAK OUT! Ventura Manzanares

presented

by

Donna O’Donnell Figurski

 

Manzanares, Ventura Survivor 070515 1

Ventura Manzanares – Brain Injury Survivor

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

Ventura Manzanares

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

Denver, Colorado, USA     venzar2238@gmail.com

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

I was poisoned by carbon monoxide between the ages of 4 and 9. The poisoning was from low-level dosages over time (five winters in Colorado). The rest of the year, I often played in the basement – near the pile of coal. Coal dust has arsenic. Furthermore, the heat pipes were wrapped in asbestos paper. I remember that, when the furnace was hot, little silver specks would pop off into the air. So, I got a triple whammy – carbon monoxide gas, arsenic dust, and asbestos dust.

4. How did your brain injury occur?

When I was one month old, I was abandoned by my parents. I was raised by my step-grandmother. I was sometimes beaten and sent to the basement to shovel coal to warm the house.

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

All through school, I remember being on-edge, fighting, and having rage blackouts. My brain would “spin.” (When you drive down the road and look at the wheels of the car next to you, every once in awhile, you get a glimpse of the hubcap. That was how my brain functioned.) I didn’t know at the time that I had brain injury. After many years, I just ignored it and tried to fake it until it passed. My brain injury wasn’t diagnosed until 2010 – during a check-up when I was living in a homeless shelter in San Francisco. Then I found the carbonmonoxidesurvivor.com website.

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

I was never treated until 2011, fifty-nine years after I was poisoned. I was given an experimental drug – Depakote (a mood stabilizer) – for one year. It worked immediately and had a lasting effect. I still feel good to this day.

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

No, but at times I did fall asleep. I remember waking up on the dirt in the basement. I also had the most painful headaches – cluster headaches on the right side of my head. My headache would last for days and take days to go away. (Cluster headaches last for periods of time. They are among the most painful types of headache known. Typically, they occur on one side of the head.). The headaches lasted from my teens into my mid-30s. I lost my life – my wife and daughter and also jobs – from those 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 have gone to a psychologist for most of my adult life, but the carbon monoxide poisoning was never addressed. My therapy now is EMDR (Eye Movement Desensitization Reprocessing) as well as binaural beats (non-musical sounds that can get your brain into a variety of desired states) and Hemi-Sync (an audio-guidance process that results in the left and right hemispheres working together) brain entertainment programs that I have installed on my smartphone. I can use them anytime I need throughout the day.

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

Tinnitus is a major issue in both ears – the ringing in each ear having a different frequency and volume. I suffer from throbbing and a sudden high-pitched ring that makes me deaf. I have to create a vacuum with my hands and pump out my ears to make it stop. I also experience nausea, dry heaves and a bubbling belly, and diarrhea – sometimes daily and several times a day. I get a feeling like I have an attached entity – like a heavy darkness – on the top of my head and on my face, throat, and chest. All these come in waves and last hours to days. I had always felt overwhelmed and stressed out. I could never keep a job for very long. Violence in my relationships and at work was my way of life.

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

As I’ve gotten older, I have eliminated as much stress as possible. But, my family (three ex-wives and two daughters) all hate me. In the 90s, I was a lot worse. I would wake up sick for hours at a time. It is not as bad now after the Depakote treatment.

Manzanares, Ventura Survivor 070515 3

Ventura Mazanares – Brain Injury Survivor

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

I missed out on everything. I don’t have many good memories of my childhood. I don’t remember Christmases, my birthdays, or Thanksgivings. School was a blur of time. I do remember getting beat up by bullies. My second marriage was horrible. I was out of control and violent. I was stressed to the maximum of my mind.

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

I like that I have gotten smarter and more calmed-down. I want to live now. Before, I just wanted to be dead. I’m happy for the first time in my life.

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

I dislike the tinnitus for sure. I get really tired of the throbbing and hearing the ringing. It wears me down. I also don’t like the nausea and the dry heaves, which have me gagging all the time.

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

Yes. It has helped to know what caused it – carbon monoxide gas. I’ve also been helped by the carbonmonoxidesurvivor.com website. I thought I was insane, and so did everyone else. I finally have a reason why I have had so many problems all my life. I was a bad person with a bad brain. But, I knew I was a good person. I just didn’t know how to do life, until now.

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

Yes. Everybody hates me. They won’t accept the truth about carbon monoxide poisoning. My family life is destroyed. I haven’t seen my youngest daughter for sixteen years.

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

I had no social life before because I was overwhelmed. I was like a leaf in the breeze – drifting and lost. Now I feel like getting out more. Also, I have met many wonderful, supportive people in the TBI (traumatic brain injury) networks on Facebook.

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

I have myself as a caregiver. I was employed as such when I was going to massage school in the early 90s. I did massage for twenty years. It gave some balance to my spinning brain.

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

I am in the process of writing a book about my life with TBI. I hope to enjoy my retirement and my pathetic social security money. Maybe I’ll be living on a friend’s ranch and be at peace.

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Ventura Manzanares – Brain Injury Survivor

19. Are you able to provide a helpful hint that may have taken you a long time to learn, but which you wished you had known earlier? If so, please state what it is to potentially help other survivors with your specific kind of brain injury.

Seek help immediately – no matter how little something may seem. Don’t take the “You’ll get over it” answer from anyone. You know what you need. Go get the answers, and save yourself.

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

Be gentle with yourself. Surround yourself with gentle, supportive people. It’s okay to do it alone sometimes. In not talking and dealing with others, we can hear ourselves. Go with your cravings – eat when you’re hungry and rest when you’re tired. Sometimes your body knows better than your mind.

 

(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.

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

 

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Survivors SPEAK OUT! . . . . . . . Deb Angus

SPEAK OUT! – Deb Angus

by

Donna O’Donnell Figurski

 

Deb Angus & her book

Deb Angus with Regaining Consciousness

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

Deb Angus

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

Alberta, Canada

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

July 2001   Age 44

4. How did your TBI occur?

We were rear-ended at a red light by a distracted driver.

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

It was realized I had a brain injury about one week afterwards.

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

None

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)? How long were you in rehab?

My rehab was all outpatient: physical therapy, January-March 2002; vestibular therapy, March-April 2002; occupational therapy, April-May 2003; and speech therapy, May-June 2003.

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

I have light-sensitivity (pain from bright sunlight, photo flash, strobe lights, etc.), double vision, depth-perception problems, tinnitus, pain from loud noises, speaking problems (word-finding, stuttering, and stammering), memory problems, concentration and attention problems, a balance problem and dizziness, left-side weakness, sleeping problems, and spatial-coordination problems. I had constant debilitating head pain for the first three weeks and shooting head-pains from August 2001 until about 2010, which have dissipated quite a lot over the years. They still occur once in a while, but they’re much milder than earlier in my recovery. In 2005, I developed an extreme sensitivity to perfumes and colognes. It started as the result of olfactory and trigeminal nerve damage.

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

My life is worse. I cannot do many activities anymore (e.g., riding a bicycle or ice-skating). Parties, large crowds, and loud noises are difficult or impossible. Light-sensitivity is still an ongoing issue. It affects my driving, watching certain movies and TV programs, and attending certain events.

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

I miss the spontaneity – just going out and doing whatever whenever.

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

I have more compassion and understanding. I’m more aware of concussions and their impact on brain health.

13. What do you like least about your TBI?

I realize our fragility in life.

14. Has anything helped you to accept your TBI?

I have been helped by time, a lot of inner work on acceptance, and learning about TBI.

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

Many people have given up on me; good friends have stood by me; many more new friends have entered my life. Only I and my husband are here – I have no contact with my family back east. It wasn’t until halfway through my rehab that I realized what a brain injury was and how much it had affected me. I was then able to recognize the symptoms in my husband when he was rear-ended at red light by a drunk driver in ’92. He was never diagnosed. He hasn’t worked outside the home in 22 years. His injury is more depressive than mine, and he dislikes being around people now.

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

I don’t go out as much as I used to. A small circle of friends, who understand what I’ve gone through and what I still contend with, invite me out for lunches, etc. No more drinking; no more music events; no large-crowd events, like the Calgary Stampede or fireworks.

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

My caregiver is just me, my husband, and patience.

Book Cover-FINAL-6x9-web3

Regaining Consciousness: My Encounter with Mild Brain Injury — The Silent Epidemic

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

I still continue to work full-time. It took 10 years of writing and research, but I finally published my book on mild brain injury in 2014. I am now out delivering talks on concussions and brain injuries to raise awareness. I’m hoping to be able to retire in next 3-5 years and to concentrate more on promoting my book and delivering talks. I’m hoping that this work will help change the paradigms in the medical, legal, and insurance industries for recognition of these injuries, the recovery process involved, and the fact that many survivors need support for employment, housing, and medical issues that may crop up due to TBI – especially as we age.

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 wish I would have known how easily concussions occurred and that repeated concussions lead to permanent brain injury. And to deal more effectively with stress, which can wear the body and spirit down to dust. I am currently dealing with kidney failure due to a rare autoimmune response to a virus. My general practitioner is convinced that this occurred because of the stress I’ve endured working through brain injury, having a job that was uncertain from year to year, and having to move six times in four years, due to problem tenants, a rodent problem, and a job transition in 2012.

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

Deb Angus winter

Deb Angus

Be patient with yourself. Be gentle and nurturing with lots of self-care. Keep strong, be determined to improve, and be willing to explore all kinds of healing modalities. Keep trying to find the right doctors and the right therapists who will listen to you and help you.

 

Thank you, Deb, 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 Deb.)

SPEAK OUT! NewsBit . . . Electromagnetic Pulses Correct Abnormal Neural Connections

Electromagnetic Pulses Correct Abnormal Neural Connections

newsboy-thResearch by scientists at The University of Western Australia and the Université Pierre et Marie Curie in France has shown that weak sequential electromagnetic pulses (rTMS) can help to properly locate abnormal neural connections in mice. rTMS does not affect normal neural connections, meaning there should be no side effects. The immediate concern is to have a new therapy for such neurological problems as epilepsy, depression, and tinnitus. Such a therapy should also provide a benefit to TBI survivors, who are constantly “rewiring” parts of the brain. (Full story)

 

(Clip Art compliments of Bing.)

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