Download e-book Brain Storms; Surviving Catastrophic Illness

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Full of tips and practical informationlike how to find an exceptional doctor, the trick to listening to your body, building a life of sheer determination, and becoming an occasional but likable nuisance when necessarywill enable you to make recovery your full-time job. Applicable both for survivors and caretakers, Brain Storms also deals with the importance of maintaining relationships throughout the difficult healing process. Be inspired to survive. How to write a great review.

The review must be at least 50 characters long. The title should be at least 4 characters long. Your display name should be at least 2 characters long. At Kobo, we try to ensure that published reviews do not contain rude or profane language, spoilers, or any of our reviewer's personal information. You submitted the following rating and review.

We'll publish them on our site once we've reviewed them. Item s unavailable for purchase. Please review your cart. You can remove the unavailable item s now or we'll automatically remove it at Checkout. Continue shopping Checkout Continue shopping. Chi ama i libri sceglie Kobo e inMondadori. It's free and yours to keep. While caring for a person in a vegetative or minimally conscious state is an enormous challenge, use of appropriate resources, as described above, can be a big help. Each person will respond differently to this challenge, but almost everyone can cope and move forward.

Many family members have a deep sense of personal satisfaction in making life as comfortable and pleasant as possible for a loved one who has sustained a severe injury. Members of the Consciousness Consortium include:. Several family members of persons with TBI generously gave their time and valuable insights to assist with the writing of this brochure. Hello and thanks for sharing your story. A week ago on Tuesday, my BF was struggling to breathe and I called He passed out s few minutes before EMS arrived.

I watched them work on him for at least minutes before they took him out. After arriving at the hospital, they said his heart stopped for about 40 minutes and that he has brain damage. They put him on ice for three days hoping to preserve any brain damage but unfortunately it did not work. Due to lack of oxygen to the brain, it caused some brain cells to die and swelling of the brain. The brain is pushing other parts of the brain and has affected the brain stem. No response to pain and doctor say no hope for recovery and need to take him off of the ventilator.

I wish he could hear me. There are a lot of things I needed to say. We were just laughing a few minutes before. He has covered many aspects not just the person affected, but the pain suffered by the relatives and friends in the process of the treatment and caregiving, so elaborately. My sister is in minimally conscious state for the past 45 days. She is off the ventilator. Just Praying for miracle to happen. My 81 yr old, VERY healthy dad went out to blow snow on Feb 1, came inside afterward perfectly fine, and in the middle of a sentence with my mom, he just fell forward on his face with full cardiac and respiratory arrest.

My mom, who's had 2 hip replacements and a knee replacement, nonetheless dropped to the floor, turned him over as quickly as she was able took almost 5 minutes , and launched CPR until the paramedics arrived and broke down the door she couldn't get up off the floor alone. The ICU doctors said that he'd had a catastrophic anoxic event and didn't have 24 hours left.

After 48 hours, they claimed that he would not survive the week, and recommended making him a DNR. Mom said not a chance. The doctors discharged him and recommended a hospice to let him die "humanely" Again, we refused and transferred him to a rehab. I asked him 2 weeks ago for one thing for my birthday Unfortunately, unless he exhibits a blink reflex, none of the doctors at his rehab will believe or admit that he is improving, and are still pushing for hospice.

I refuse to give up but am getting frustrated, as he will soon be discharged from this facility because they don't admit his improvements and call him terminal, and this location is the ONLY one that has trach care needed for his problems with lots of respiratory secretions within 3 hours of home. I cannot drive due to vision issues, and losing 6 hours of my time that should be spent with him isn't acceptable, but I don't know what else to do!

Sorry, I meant to post a positive message about how doctors don't know everything yet, not complain. Just know that if you love the person who has been injured, and give them all the support that you can, they can come back farther than others might believe. I am Health Care Proxy for my friend. He had 12 hours of surgery, He is mostly in a vegitative state for 16 days. What are his chances? Do people come out of those long term specialty hospitals?

I am ignorant of this whole thing. He was supposed to be in the hospital 7 to 10 days, and he is still in ICU 16 days later? He had surgery to relieve the pressure from the bleeding a few hours after the fall. The ICU doc said if death was 10 his injury is a 9. He was in ICU for 2 months with no significant improvement and a poor prognosis. They moved him to a sub acute trachea care center, he is in a MCS he has been in the facility for a month. They are trying to wean him from the ventilator.

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He has started to show some improvmemt like more time spent with eyes open and seemingly tracking but not really following commands yet. When this initially happened the docs after about 2 weeks were trying to get us to let him go, we refused.. They want to move him to a nursing home but we rather he come home since the quality of care will likely be poor..

I will update this post next month. My father who is 77yr old going through same situation now. I can completely relate to your situation and would like to know any latest developments. How is your father now? The cancer did not spread to other organs but the entire pancreas had to be removed and was deemed a successful surgery. They gradually stopped the anesthesia drugs and took the ventilator off to attempt to get her to breath on her own. It took about seconds according to the nurses to notice she stopped breathing.

They intubated her and placed her back on the ventilator. Prior to removing the ventilator, she was responsive and coming in and out of consciousness.. The following day she declined and fell into a deeper state of unconsciousness. We are awaiting additional tests to find out the extent of the brain damage and causes.

I will continue to update. Thanks to all that have shared their difficult stories. Hi everyone, My Aunt had an asthma attack followed which she had an cardiac arrest we reached hospital in 4mins and to revive the hearth it took them 5 to 6mins, doctors tell she has an hypoxic brain injury due to cardiac arrest, we are hoping she will recovery from it but she is still in deep coma she has little bit of senses and eyeball movement she doesn't open eyes.

I would like to know the view of the survivor of hypoxic brain injury or there families to reply or email me so that i would guide my family and relatives not to pull the ventilator support from my Aunt. I'm praying for your family please pray for mine my sister has been in this state for 3weeks because the amniotic fluid after birth poisoned her body may God be with us. My healthy vibrant 82 year old mother fell three weeks ago this Saturday.

Les Duncan (Author of Brain Storms)

She slammed her head on the floor - it sounded like a weight hit the hardwood floor. I ran to her side and she was wincing in pain for approx 25 seconds then suddenly she had a massive stroke right before my eyes and died. Needless to say, I am devastated and I can't help replaying the happening and looking for clues as to why she fell. I can only imagine that hitting her head so hard caused a brain bleed which then caused the stroke. I would really appreciate an understanding of what may have happened to her.

Mom took a low dose med. She took no other Rx meds, just vitamins. Her GP recently told her she had A-Fib but did not provide her any information, did not prescribe any RX to minimize stroke possibilities, or send her to a cardiologist for care. What could possibly have caused her to fall? I know knowing doesn't change that she is gone and I know I should be grateful that at least she isn't lingering in the hospital with brain damage but I feel learning what happened would help me cope with the loss of her.

I am not sleeping thinking about the happening constantly. I can't make sense of it. Can any of you help? Unfortunately, intermittent dizziness upon standing is common among all age groups at certain levels of fitness or the lack thereof. Coupled with a medication that lowers the blood pressure, it is likely that she momentarily lost her balance from sudden dizziness, as you noted.

What you witnessed after was unlikely to have been experienced consciously in any capacity, as the likelihood of a woman her age retaining full consciousness after such a blow to the back of the head is very slim. The brainstem is where breathing and other vital functions are maintained, so it's likely she was knocked unconscious and her body, for lack of a better word, simply turned itself off due to the trauma. Painless, though it may not have looked as such. She has found peace now, and I hope that you are able to find peace in the future.

Loss of such magnitude is impossible to erase, but the grief will lessen. Hello, My husband had a ischemic stroke right side. Reading this article has helped me to understand the process he is going. He now can open his eyes and follow you around the room by looking at you but no facial expression. I just hope he be able to pass the minimal consciousness stage which I think is were he is at right now.

I really hope he remember our children. Thank you for the article. Does anyone have a experience with this type of injury? My wife is in the ICU right now and I believe she is in the vegetative state. It has been less than a week. She was weened from sedation, approximately 48 hours later she had very small of eye movement and some response that our doctors and nurses describe as reflexes but has only begun to open her eyes.

She holds eyes wider and seems to be progressing rapidly. My advice for you is to pray for healing.

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Speak and think only in positive outlook. Do not use terms like "I hope" or "need" or "can't" only speak as if you already have or the situation you want already is. You don't any more need because you already have and can't. Cause can't never could. You can do what you believe you can do. And read the article again so you can absorb the info and comply as much as possible. My brother-in-law is going through the same at the moment..

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  • But i am looking for answers.. My BIL had brain haemorrhage two weeks ago and he was sedated all this time or call it induced coma. He has been weaned from the sedation but as yet hasn't opened his eyes. I haven't asked too many questions with his wife who is already so disturbed but is there a time limit within which time they are supposed to open their eyes after weaning or do we know exactly when they are supposed to be doing this or do we wait forever for him to open his eyes.

    I am wondering what would be the quality of life he would be having after all what he has been through after all it was his brain but the rest of the organs are in perfect condition. Just very worried and concerned for him and his family. So glad for you. My prayers are with you and your family. We are having a similar situation. My mom who is 67 had brain injury due to hypoxia and is in Coma for the last 24 days. She is having very small eye movement and some response, but doctors are saying those are reflexes.

    The doctors are saying there is no possibility of a meaningful recovery. At her age, it is impossible. Would you mind sharing your wife's age and what you can say about my mom's condition from your experience what you went through. Thank you for posting this valuable resource. I found myself in a minimally conscious state following a massive cerebellar stroke.

    I was aware of the comforting presence of my wife and children. I found this in my search to understand what was going on with my mind. There was one thing that brought me back. For my entire life I have been compelled to arrange things; in my childhood, my Dad brought me hardware to arrange and containers and drawers to put it in. That is how it started In rehab I had received many cards, some signed by whole groups of people, and I asked a visitor to arrange the cards on a shelf in my private room.

    They did that, but the cards were not arranged right. It was my compulsion to arrange those get well cards correctly that returned me to the present. BTW, I'm stumbling around without assistance following my stroke. I can do everything I did before, but some things are very hard. I'm looking forward to a long life. My mother is 62 and has been on medication that makes her fatigued and dizzy. My father came home three days ago and found her laying in the hallway, covered in blood, asking for my grandfather to help her who has long been deceased. They have taken her St.

    Vincents here in Birmingham, AL. It appears she had hit her head, probably due to a fall, causing bleeding in the back of her brain and head. The bleeding has stopped, but she is in a vegetative state. She moans, randomly smiles, and moves without purpose but can not follow commands. She does not react to sounds, but does open her eyes here and there, although she does not follow movement or lights. This is the third day, but there has been no improvement. The two neurologists assisting us told us that they are simply waiting for her body to naturally absorb the blood, that surgery would be too risky for her age and that it is unnecessary.

    They said that she should regain consciousness in the next week or so. I'll leave important updates as they come. It's heartbreaking to see a loved one like this, but this article has helped us understand what stage she is in and how her recovery process will look like, thank you so much for this resource, God bless. This article is very helpful. My sister had a sudden cardiac arrest at home last Tuesday. She is 44 years old. She is still in ICU and will be moved hopefully today to a different hospital where they plan to do more tests. I don't know all that they have done, but they are using therapeutic cooling right now.

    Her temperature is not going down as far as they like, because she also seems to be fighting a fever. After reading this, it looks like she is in the vegetative state. Her eyes are open sometimes and closed others. She doesn't look at anything or track objects. Her heart is beating on it's own, but she is on a ventilator.

    She fights the ventilator sometimes to try to breathe on her own. I would like to read comments from others who have experienced this with family members. It's very hard not knowing how far she might come out of this, or if she will. Hello, hope your sister is recovering well. My husband 52 years old had a heart attack a week ago at home while he was asleep.

    Thankfully I was in the bedroom when he went under cardiac arrest so I was able to call immediately. My 2 sons were also home so they put him on the floor directed by operator. His heart is doing much better after a stent was placed in his heart, he is off the ventilator and breathing on his own, He opens his eyes but doesn't make contact, he moves his arms and legs, he's not talking. We're going through this right now with my brother. I know it's been almost a year that you posted this. How did it go for your sister? Feel free to check our Website and please let us know if this tool supported you and your families too.

    I have a 37 year old son that went into cardiac arrest two years ago. He had shut down completely, liver and kidney.

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    • Characteristics of the minimally conscious state;
    • Doctors mentioned there is no brain activity, kidney and liver shut down. No sense in doing anything if there is no brain activity. His aunt prayed over him and he started moving his eyes, squeezed my hand, and he moved his fingers. Told the doctor she said it was reflexes. Then, when he kept doing it on command, they decided to do the pacemaker. He had dialysis for a week, has sclerosis of the liver. Bottom line is keep the faith, I still have my son after two years.

      Blinks on his own, awake and sleep stages - has heart beat and is over breathing the ventilator - my biggest fear is that we make a decision too soon but not sure what to do next, seems like the hospital we're at is not a good place for Nero and I'm starting to realize they didn't do all the things other people have discussed as part of their treatments - How long should we wait to see if he improves? Hello everyone, for past few weeks I have been reading everything about coma, vegetative state, etc. My dad had a major cardiac arrest.

      His heart stopped for 25 min. They resuscitate him and finally came back. He needed stems at his heart so that has been done. The doctors have put him in a induced coma. After one and a half weeks they tried to stop everything. Cutting the story short He opened his eyes, moved his hand and legs, smiles but there is no consciousness yet! The neurologist will assist and hopefully give us some good news. He has progress every day. Every day is a new move or a cheeky little smile. I just hope he will be conscious soon because this is draining.

      He is in a vegetative state I believe? He reacts at every noise around so I'm not sure if is not classed as minimal consciousness? God bless everyone with this problems. It hurts so much: My dad had a major heart attack at home. My brother commenced CPR until the ambulance arrived. He went 40 minutes without oxygen.

      He had surgery and a stent was inserted.

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      We were told he might not make it through the night. He was in induced coma for 1. He now had aquired a hypoxic brain injury. He unfortunately does not know me or his grandchildren. Hes a completely different person. My dad would not want to live like this. Nor do we as a family watching our father detoriate in front of us while physios and doctors try to make dad walk.

      I love my dad. But the outlook for my dad's life now is awful. He's going to a nursing home. He will need 24 hour care. At 62 years of age. I'm so thankful we can still hold dad's hand. I question the doctors who saved dad's life I'm struggling that dad should have passed away and after 40 minutes without oxygen. I do no believe he should of been saved. Am I selfish for thinking this way? I have been struggling with almost the same situation. Similarly my father had a cardiac arrest at his house, minutes of CPR, brought back in the ICU after a week, but diagnoses with hypoxic brain injury.

      He has been in an acute care facility for the past three months, slowly getting weaned off the ventilator. I feel like I am in a different reality compared to the rest of the family. I don't think this is anything that my dad wanted. I am so scared that he will end up in a nursing home with minimal abilities. I feel like the rest of my family is being selfish. I don't think they are respecting my father's wishes. My dad was diagnosted with gbm 2 years ago. He had 2 seuizers last sunday. He has not waken up since. They saw multiple blood spots in his brain.

      It is absolutely devastating to see him like this. This is an incredibly difficult thing to watch your loved ones endure. So my heart goes out to those who may be going through this at this time! We lost our daughter last year because of a severe brain injury due to Hypoxia. Dispersed brain death left her in a coma for an extended period of time. We loved her very much and are heartbroken.

      If you are a loved one looking for answers, I pray for the best possible outcome. My daughter struggled with anorexia for 4 years. It became a severe mental illness and at age 21 not only did she stop eating but was drinking too, while in a very fragile state. A friend also brought over 'spice' to smoke. By the next day she suffered massive seizures, died and was resuscitated and then was in a coma. She was put in a sub-acute facility her accident happened while on vacation away from home and our home town didn't have a sub-acute in Southern California.

      We had to move there for 1 year to be near her hospital.