TBI – Survivors, Caregivers, Family, and Friends

Archive for March, 2016

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.

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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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Another Fork in the Road Reasonable, Responsible, & Realistic Resolutions

“Another Fork in the Road”

Fork in the Road copyThis category is an extension of my radio show, “Another Fork in the Road,” which airs at 5:30 pm (Pacific Time) on the 1st and 3rd Sundays of each month on the Brain Injury Radio Network. (See the “On The Air Show Menu” category for a list – with links – of all my shows, which are archived and thus always available.)

On the 1st Sunday of each month, I host a panel of brain injury survivors, caregivers, and/or professionals in the field. On these shows, my panelists and I examine topics pertaining to brain injury.

On the 3rd Sunday of each month, I host guests – brain-injury survivors, caregivers, or professionals in the field.

Since I spend countless hours in preparation for each show, I decided to share the knowledge that I gather with my readers.

 

Reasonable, Responsible, & Realistic Resolutions

by

Donna O’Donnell Figurski

 

blank list of resolutions on blackboard

New Year’s Day has passed. A new year is always a time of renewal – a time to look back on the past year and make positive commitments for the upcoming year. As humans, we seem to strive to improve, to make life better. The new year is a good time to correct old mistakes and to look to the future and make new plans.

I think this topic is appropriate now, as we look back on the past two months to determine if we are honoring our New Year’s resolutions. Did we, in fact, make reasonable, responsible, and realistic resolutions?

 It feels like the whirlwind of the holidays happened eons ago, and yet it’s just been two months. If you are like most of the population, you probably made resolutions on New Year’s Day – promises to yourselves that you would do something in your life to better it. In the days after the New Year’s celebration, you will see more people in the gym or running through the streets – maybe decked out in new running clothes to increase their motivation. You might hear folks talking about the new diet they are going to try to lose those unwanted pounds. Some folks vow to stop smoking or drinking, or at least they intend to cut down. Folks promise to take more time for family or friends, save money, travel more. new-years-resolutionsThe list goes on and on. Usually these resolutions are good intentions for the year that last maybe a week or two – perhaps even a month – but for whatever reason or reasons – time, lack of interest or motivation – many of these good intentions fall by the wayside.

Each new year, I usually make the resolution to exercise more. I start off okay, but not long after New Year’s Day is past, the motivation walking_girlstarts to wane. Lack of time, or more like “inability to properly manage time,” is a big factor for me. I seem to be always too busy with tons of projects, most of them involving writing. I work daily on my blog. I spend hours preparing my radio show. I’m writing articles for publication, and, of course, I have to write a lot of query letters to agents and publishers as I try to sell my book, “Prisoners Without Bars: A Caregiver’s Story.” It seems that the only things that ever get any exercise are my brain … and my fingers as they fly over the keyboard. Uh, did I say “fly”? I meant more like “stumble.” Most of my projects have deadlines – if not actual ones, then at least self-imposed ones. So, due to my over-commitments, this year I chose not to make any resolutions that I know I will not keep. Not keeping my resolutions only makes me feel like a failure, and that is not productive. I bet a lot of people fall into this category.

Folks with a brain injury are continually working to improve their lives, and New Year’s resolutions may seem even more important. Brain-injured people are used to taking small steps, but the temptation for New Year’s resolutions may be to try to do too much.

I’m going to discuss how to keep interest up and to make it possible to reach the goal of a reasonable, responsible, and realistic resolution.

DO YOU ENJOY YOUR GOAL?

Don’t have a goal you will never want to do. That’s a recipe for disaster. Is your resolution such a chore that you can easily find any excuse to NOT do it? If you’d rather clean toilets than complete your resolution, then perhaps you should reassess your resolution. toilet1I can pretty much guarantee that you will not be successful and that lack of success is certainly going to instill feelings of failure. I think a big part of being successful in keeping a resolution is to give the goal some thought first.

DECIDE HOW YOU WILL IMPLEMENT YOUR GOAL

If you want to get more sleep and go to bed earlier, then set an alarm for 30 minutes before your desired bedtime so you can start your sleep in bedbedtime preparations. If you want to always remember where your keys are, put a hook on the wall and ALWAYS hang your keys there. You will never have to search your home again for keys. Following a routine makes life easier. That goes for anything. Also, use available tools (calendar, Post-It notes, smart phone, etc.) to help you keep organized.

KEEP A TRACK RECORD

By keeping a record of your accomplishments, you are setting yourself up for success. You could keep a record in a journal-like notebook. journalSimply write the date at the top of the page, and write what you accomplished that day (e.g., Sit-ups – 5 minutes; Meditated – 10 minutes). You could also simply use a calendar dedicated just to your resolution and write your activity under each day that you do it. If you are computer savvy, you could keep a spreadsheet. Place the days in the left column; list the activities across the top. Then just put a checkmark in the box corresponding to day and activity. That would be the way I would do it.

I like to see my progress. It motivates me. I enjoy seeing how well I am doing – or NOT doing, so that I can readjust and improve. It may work for you too.

BE PATIENT – YOUR GOAL WILL NOT BE ACCOMPLISHED OVERNIGHT

Your success will not happen overnight. It will take time. You may even become lax at times, but don’t worry. The record keeping that we spoke of above will help to get you back on track.

Before his brain injury in 2005, my husband, David, used to do a half hour of his version of Tai Chi every morning. He’d run twenty miles each week, and he’d regularly lift small weights to strengthen weight_lifting_13his arms. He was fit and healthy. He exercised not only for his health, but also to leave the stress of his laboratory behind. David’s disabilities are all physical, including severely compromised balance, which makes him unable to run. He regrets this, but he has turned his attention to the treadmill – with its handrails – for exercise. He has also recently acquired a recumbent trike, which allows him to pedal away on his own with no danger of falling. None of this was possible when David first arrived home from the hospital. He was confined to wheelchair and bed. He could not even stand unassisted. It was a slow process – one that he has worked on over the past eleven years, but with small steps and small increments of exercise, he is gaining his strength and his independence.

So, no matter what your goal is, BE PATIENT. Reach for the stars, but remember, it will take time.

BE FLEXIBLE

If you choose a goal that you find is not appropriate – it’s too hard, it’s too easy, or you are not enjoying it – QUIT IT!

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It’s your life, and you can make the choices. Because you are a brain-injury survivor, I am sure there are many goals you would like to accomplish. Make new resolutions. (It doesn’t have to be a new year.) And, mix it up.

If you are not seeing the progress you want – for whatever reason, choose something else to work on. You can always come back and try again later. That’s why I encourage you to make reasonable and realistic resolutions. You want success to be imminent.

Once David tried a form of therapy on the recommendation of a friend who insisted that it helped her greatly, and, in fact, it did help her. David tried it for quite a long time and dedicated himself to it, but found it tedious and boring. He soon quit and set his sights on something more enjoyable that was not going to make him miserable. That’s where the flexibility comes in. Do what works for you.

TRY SOMETHING NEW

I mentioned earlier to “mix it up.” That’s not a bad idea for anyone. If boredom sets in, your chance of success will fall greatly. You won’t reach your proposed goal, and you will become disenchanted with the activity. The feelings of failure are right behind. So, don’t put yourself in that position. Make a new resolution, and try something different. It can be something different that is still familiar, or it can be something so different that you have never done it before.David on Recumbent Trike

I want to go back to the story of David’s recumbent trike. In his adult life, he never rode a bicycle. As I mentioned, his preferred method of exercise was to run. When that was no longer a viable exercise mode, he turned to a recumbent trike. That has changed his post-brain-injury life. Before the trike, David was unable to leave the house alone. Now he can leave whenever he wants to. He is able to go to the garage, get on his trike, ride for several hours, and return. (The only thing he cannot do is get off the trike anywhere else because his balance issues do not allow him to walk freely outdoors.) So, try something you have never done before. Maybe you always wanted to draw or paint. Do it.

HAVE A BUDDY FOR SUPPORT

You may want to exercise with a buddy. Exercise can be much easier with a friend. I much prefer walking and talking or treading water in the deep end of a pool and talking or rotating through the machines in the gym and talking. Are you seeing a pattern here? I find exercising with a friend much more enjoyable than exercising alone. No matter what your goal is, if you can do it with someone else, it makes the exercise easier. It also adds an element of accountability. If you have made plans with a friend, you are more likely to meet your goal.swimming

For most survivors with brain injury, life has drastically changed. The kinds of resolutions that you may have made before your brain injury are now more than likely impossible to attain. But, that doesn’t mean that you can’t set goals that you can successfully achieve. The gym may be out of the question, but you can set aside some moments at home for leg lifts, small weights, push-ups, stepping-in-place, etc. You can do anything to keep your body fit.

Each brain injury is different. The disabilities that accompany each brain injury are wide and varied. For some folks, the injury entails only cognitive/learning disabilities or emotional issues. For others, the brain injury might include physical disabilities.

So basically, you want to assess what you can do to improve your life while not being miserable. You want to make resolutions that can fit into your lifestyle. You don’t want to set your goals so high that they cannot be achieved. But, if you set your goals too high, change them. Make your resolutions reasonable, responsible, and realistic. Most of all, make them FUN.

have_fun

 

Click here to listen to my show:

“Responsible Resolutions” on “Another Fork in the Road,” on the Brain Injury Radio Network.”

(Clip Art compliments of Bing.)

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On The Air: Brain Injury Radio “Another Fork in the Road” . . . . . Grief After Brain Injury

On The Air: Brain Injury Radio “Another Fork in the Road”

Grief After Brain Injury

presented

by

Donna O’Donnell Figurski

 

images-1Grief is often an after effect of brain injury. It is experienced not only by the survivor, who may have lost his or her “old” self and is trying to adjust to his or her new world, but also by those who have frequent contact with the survivor. As we know, brain injury affects ALL members of the family, who are often the caregivers.

Lisabeth Mackall Book 061215

Lisabeth Mackall caregiver & author

Panelists, Sandra Williams (both survivor and caregiver), Dr. David Figurski (survivor), and Lisabeth Mackall (caregiver) joined me to discuss the topic of GRIEF. We examined the feelings of the family as they adjust to their loved one’s change, as well as discussed the stages of grief as outlined by Dr. Elisabeth Kübler-Ross in her book entitled, “On Death and Dying.”

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Sandra Williams survivor & caregiver

 

David

David Figurski survivor

 

 

 

 

 

 

 

 

If you missed this show about “Grief After Brain Injury” with Lisabeth Mackall (caregiver), Sandra Williams (survivor and caregiver), and David Figurski (survivor) on March 6th, 2016, don’t fret. You can listen to the archived show here. Click the link below.

See you “On the Air!”

On The Air: Brain Injury Radio “Another Fork in the Road” Grief After Brain Injury

(Clip Art compliments of Bing.)

(Photos compliments of guests.)

As I say after each post: Please leave a comment by clicking the blue words “Leave a Commentanim0014-1_e0-1 below this post.

Feel free to follow my blog. Click on “Follow” on the upper right sidebar.

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

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

Feel free to “Like” my post.

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