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IF YOU ARE THE SPOUSE OR LOVED ONE OF SOMEONE YOU SUSPECT MAY HAVE BEEN EXPOSED TO TOXIC CABIN AIR OR A FUME EVENT, PLEASE READ THIS
Being the spouse or a loved one of someone affected by Aerotoxic Syndrome or Toxic Cabin Air can be challenging, at best, and at worst can undermine a relationship.
Exposure to toxins in the cabin or from an airplane such as TOCP or other tryglycerides is not something familiar to most people and, therefore, there is little understanding of either causes or effects.
In reading through this website, hopefully, as a spouse or loved one you can gain some insight into the traumatic and extensive effects that exposure to toxic cabin air can have. Often, the exposure is either not known or not recognized. Early signs, as we have referred to in this site, often mimic the flu, and can include breathing difficulties, sinus problems, headaches, and similar effects. In dealing with a spouse who has the symptoms most people would simply be supportive and wait until the symptoms were better. These relatively minor symptoms can develop into more dramatic and serious symptoms and conditions rapicly. If you recognize that the symptoms could be more serious, as a spouse, you should gather all of the information you can about the possible exposure event and convince your spouse or loved one to seek the help of a doctor and, hopefully, a neurologist who has some knowledge of these effects. The sooner you can get help the better the chances of some significant recovery.
The airlines have denied these effects for years. It is amazing how few airline personnel including pilots and flight attendants are still not aware of Aerotoxic Syndrome or Toxic Cabin Air. If you, as a spouse, have heard about these effects and may suspect it has affected your loved one please educate yourself in this website and try to get the help for your spouse that you can.
AFTER THE INITIAL SYMPTOMS – WHAT TO EXPECT
After the initial stage of flu-like symptoms a person who has been exposed may progress in to various stages depending on the length or strength of the exposure. Breathing difficulties often occur as well as neurological symptoms. Personally, my wife began getting so tired that she had to take naps in the early afternoon and could not exercise or do anything of an athletic nature. One of her hands began to shake uncontrollably for periods of 15 seconds to a minute at intervals with no specific warning. She thought she had vertigo because she would become dizzy and have balance problems. She experienced numbness in her feet and arms at times. She even got to the point where one foot was dragging at times. She became very irritable and frustrated. She began the routine of seeing numerous doctors and specialists, very few of which had any knowledge of toxic cabin air and attributed many of her symptoms to other causes, with ‘treatments’ that had little effect.
These symptoms I mentioned are typical symptoms as the damage from the exposure progresses. At first you, as a spouse, may not recognize why these things are occurring. Toxic exposure can and does cause actual brain damage. It is a toxin which attacks the body and the brain. It can be discovered or verified through MRIs and pet scans. It can manifest itself by a person having difficulty completeing his or her thoughts or even having difficulty being able to comple sentences.
To people who do not know your spouse it may just appear that your spouse is just a little ‘scatterbrained’ at times, or just slow to pick up ont things. A person’s ability to remember things either long-term or short-term can be minimally or severely impaired. As a result, emotionally, the exposed person can become moody, depressed, frustrated, and angry at times. The anger and frustration can be misdirected at times. As a spouse you have to remember that the exposed person does not recognize what is happening or why and just wants to be themselves again. The natural reaction is anger and even to find blame on others who do not understand. To a spouse, the reactions may seem inappropriate or over-reactive to what was said or done. The person may have problems processing what may seem like simple questions or statements. They may not comprehend what you or someone else is trying to tell them, even if you think you are being of help or comfort. It can be a long journey, but if you know and understand what is occuring, it is one you can, and must make.
At one point, while I was at work, my wife called me because she was having difficulty breathing. Paramedics responded and determined, in their opinion, it was an anxiety attack. Thankfully, she had an appointment later that morning with a lung doctor, a pulmonologist, because of her shortness of breath. When she arrived, he sent her directly to the emergency room. She was admitted. The emergency room doctor thought she may be having a heart attack and she was placed in the cardiac intensive care unit. I sat up with her for what seemed like days, sleeping in the hospital room, she even became unresponsive. A neighbor later told me that she thought my wife would not make it. After a series of tests and after two days she was diagnosed with pleuro-pericarditis. This is a swelling around the heart and the lungs. I found out that it can be caused by toxins in the body and the body ‘attacking itself’, toxins from the exposure to TOCP or tryglycerides. As a spouse you must be aware of these possiblilities and demand tests of the doctors.
Doctors are not universally familiar with toxic cabin air, but many, especially neurologists, are familiar with toxic encephalopathy and toxin poisoning. Be prepared over a period of months and even years of seeing doctors, that you may be told that your spouse has lupus like symptoms, meniers’s disease, fibromyalgia, and various other medical problems that doctors can explain.
We have discovered through our research and speaking with experts in the area of toxic exposure that toxins such as TOCP can mimic these conditions and other ones. We suspect that over the years many flight crew and probably passengers have been diagnosed with these other ailments when, in fact, their problems may have been due to toxic exposure.
As a spouse, the most important thing that you can do is to be aware of the various emotional and physical changes and problems that may be occurring, and why they are occurring, and to try to be understanding and supportive even though the understanding and support may not be recognized or even accepted at any given moment by your spouse. Understanding that frustration, anger, depression, even paranoia (yes, paranoia is a sympton or condition that is caused by toxic exposure), and physical problems are likely out of the control of your spouse. Your spouse’s personality may change, temporarily or long term. Learn everything you can. Guuide your spouse in the right direction. He or she will not be of a state of mind to help themselves for a while. Anger may be directed even at your attempt to help. Be patient.
My wife was exposed in 2006. Much less was known or acknowledged about toxic cabin air then. Over the period of discovering what was going on and trying to determine what was real, and what doctors were saying, until finally discovering the cause and effect, we went through a lot, her much more than I obviously. My wife has progressively gotten better. If the exposure was enough to cause brain damage permanently or temporarily, be aware that the brain can rewire itself and do amazing things. Knowing the problem and working with it are important.
WHAT ELSE CAN YOU DO TO HELP YOUR SPOUSE GET BETTER
One of the best things my wife did was a distilled water fast under medical supervision. Although, I was skeptical at first, the effect on her mentally after she completed it was no less than amazing. Her ability to comprehend and to finish sentences was dramatically increased. A change in diet to more organic foods and foods not grown by using pesticides has also helped. I am sure that I was not nearly as understanding or supportive as I could have been or even as much as I thought I was being. I did not always react or act the way I should have or could have.
Certainly, professional counseling can be of assistance, however, most counselors are unaware of these toxic effects and I would recommend that you, as a spouse, educate yourself as much as you can on the cause and effect of toxic cabin air syndrome and aerotoxic syndrome. You will find links and resources on this website to help you. Feel free to contact us for specific information and possibly referrals.
You should request for your spouse an MRI and a pet scan. These are very helpful in diagnosing toxic encephalopathy as well as vertebropasilar insufficiency. Toxins can cause ischemia in the brain which is a shrinking of the blood vessels. This can cause the brain of a young person to look like one of an elderly person, with the same problems of memory loss and confusion. ONe neurologist prescribed nitro for a period of time to open up the blood vessels. There is help out there.
As more spouses and loved ones contact us and allow us permission to exchange contact information, we hope a support group will be made available for the spouses and loved ones of those affected. Please feel free to send any suggestions you have as well as in the links or information and volunteer to be available if you wish.
For me, it took a while for my wife to feel that she could travel by air again, of course, only as a passenger not an employee. She carries with her a mask which was purchased on the website www.aerotoxic.org, which may help if, in fact, there is another bleed air incident on an airline on which she is traveling. I carry one to. I have found that most people are very skeptical about the existence of the toxic exposure on airplanes and are also skeptical of the effects. When we share our knowledge and experience with flight crew we find many are still unaware or just assume that the airline would let them know if there could be a problem. Many people feel that the physical and emotional effects manifested by those who have been exposed are simply things that were pre-existing, or that the behavior may happen for other reasons. They listen and say ‘oh yes’ but they do not understand. We, as spouses and loved ones of those who have been exposed need to educate these people and educate ourselves as to how to respond when we are challenged.
The affects of exposure can be immediate in the case of a significant exposure, or it may occur gradually over time for flight crew who are routinely on aircraft with oil leak or gasket issues.
I love my wife deeply and am pleased with the progress that she made. I am not sure things will ever be exactly as they were, but they are, once again, good. We have heard from many people whose experiences have been less dramatic and have had less effect on them, although a large effect, and we have heard from people who had even more debilitating and dramatic outcome. We wish everyone the best and urge you to continue trying to get better and to spread the knowledge about the effects of exposure to TOCP and the toxins from bleed air and the leaking oil which is heated by the engine and which results in the forming of the toxins.
Be safe and fly with knowledge.
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