Saturday, 30 April 2011

Dealing With Chemical Encephalopathy.

In September / October 2006, my husband Bill was involved in industrial accidents with neurotoxic agents, ie chemicals.
Unsurprisingly, he became extremely unwell with a mix of very confusing and distressing symptoms including (but not limited to):
  • tremor
  • hypertension off the scale. From 180-220 over anything from 120-150 mmhg. Life threatening.
  • weakness
  • dizziness
  • nausea
  • vomiting
  • overnight changes in visual acuity
  • bloating
  • jaundice
  • sudden weight gain
  • coughing fits
  • unable to balance/ remain standing up with closed eyes
  • incapable of walking in a straight line
  • and at times near collapse combined with an inexplicable inability to tolerate many household and personal care products.
Post Accident Medical Care:
Employment doctors were of no earthly use as were those at local hospitals to which he was sent for assessment. The final straw for me was when one bright spark sent him home with acid reflux medication.
We searched for and found a doctor in St Louis, Missouri - Dr. Tipu Sultan - who specialises in Environmental Medicine. After several tests, he diagnosed Bill with Chemical Encephalopathy - (ie., Brain Damage caused by a chemical agent) - plus severe Reactive Airways Disease. Dr. Sultan recommended we get a functional scan known as a SPECT scan, and see a specialist neuro-toxicologist Dr K. H. Kilburn in Pasadena.
Bill heading for the Bahamas with DEA in 2005
The employment doctors did a CT scan of his brain - and found nothing!
Allow me to share a little piece of information these guys don't bother telling you.
You can carry out a CT scan on a cadaver up to 12 hours post mortem - around which time the brain begins to really decompose and liquify - it will show a normal brain, unless it there is a bullet present, an obvious tumour or a fractured skull.
CT scans reveal structure, not function.

With further research we found a scanner facility  in Denver that had the newest scanner in the USA. The only 4 headed camera of its type in the United States at that time, which had just recently arrived from Germany in January 2007. They did two SPECT scans seven days apart, and we visited the Dr. Kilburn in between.

The reason for two scans is simple.

One is done under conditions of relaxation, warm area, eyes closed - covered with an opaque mask, headphones with gentle "white noise", no other stimulation from any source. The second scan is done while putting the brain under "stress". ie, asking various questions pertaining to mathematics, logic or linguistic problems, or using various types of stimuli which illicit emotional, auditory or visual responses, or require memory.
Each time the scans were performed, a radio-opaque dye was administered. The isotope travels in the blood stream, and is specifically taken up by brain tissue. Areas of active brain become obvious as blood flow increases and larger amounts of isotope is absorbed. The distribution of the nucleotides give the final picture on the film.
In Pasadena, Dr. Kilburn carried out 7 hours of quantitative and qualitative testing of Bill's capabilities and brain function. These tests can also detect if you are attempting to fool the system (ie malingering), as it measures brain functions and timings directly and electrically, and not just by what the patient reports or claims, nor what the doctor or assistants observe subjectively.

In Scotland 2004
These test confirmed without doubt his brain is comprehensively damaged. There is not a lobe that isn’t affected.
  • He has lost his sense of smell.
  • His ability to balance has gone; he can’t walk in a straight line any more nor can he close his eyes, or stand in an unlit room without falling down - remember, blind people can walk. Neither can he look up at the sky when he has no reference point (a tree, hill) to tell him where he is in space with reference to the ground, otherwise his balance fails and he falls.
  • He can no longer write and has no fine motor control in either hand.
  • He is unable to drive due to reduced reaction times, and the inability to estimate traffic speed, car spacing, timing etc... how frustrating for a man who raced motorcycles.
  • He can't even travel safely in many cars if they don't have a “recirculate function” on the AC which means he can be affected by vehicles with polluting exhaust impairing his functionality and affecting his lungs.
  • His intellect is largely intact - but he is unable to concentrate for more than a 40-60 minute period on anything as he "falls asleep" - it's actually more like a state of unconsciousness. This happens because his neuro functions shut down as the damaged areas are unable to uptake nutrition. His blood brain barrier is also destroyed, so now when he is in contact with any petrochemicals or derivatives, he becomes ill. Very, very ill.
  • After the accident 2007.
  • He has short term memory problems and has lost the ability to create crystalline (long term) memory unless he reads and rereads things over and over, but because he can't concentrate this makes him fall asleep, then his memory gets wiped clean. Are you beginning to see a few problems? Bill used to read anything up to 3 or 4 books a week. Now he can't even read a single chapter. Thankfully, memories from prior to the accident remain intact and very clear.
Now Try Living Life Like This:

Meeting new people or going new places soon becomes a pointless exercise. After several days, trips meeting new friends become a vague memory, like something he was told a long time ago - then after about ten days, they may as well have never happened. His life is a bit like the character in the "50 First Dates" movie, but the total memory loss takes about 5-10 days, then it's all gone.
People and places and events just cease to exist. Ever since the accident Bill has made an effort to maintain a daily journal of what he did, where we went, with whom we went, anyone we met, so forth and so on. He one-finger types this into his (large keyed) lap-top. If he didn't, his life would not exist, except in a day to day fashion with memories greater than a week fading into oblivion.

From the point of view of his personality, he’s ok’ish. He has lost many inhibitions which were part of his charm - for instance, he never swore unless the situation was really bad - and now he does. He becomes very frustrated by his inability to use either of his hands, and is certainly a little less patient than prior to the accident. He is also very much less confident than previously, second guessing many of the things he does, instead of following his instincts. And finally, he’s lost over 5 stone (70lbs).
So far, however, we are lucky, he has no signs of dementia or confusion, however both doctors say he has now a 70% chance of developing both, plus or minus Parkinson's Disease in the not so distant future.

Sounds totally crappy, doesn’t it?

It certainly was. For many weeks following the accident, I was in fear of waking up to a corpse in the morning, he was so sick.
Our security and future seemed to become hazy and lost as we had to sell the house in Kansas City, firstly we had to pay for all the medical bills ourselves and secondly, the pollution levels there would have killed him within 5 years. We were now homeless and required a solution. Our choices were fairly limited too. With very little cash left, we had to decide whether we were heading for a trailer park in the Arizona desert or an isolated mountain cabin. However, after much consideration, we bought a boat to attempt to achieve our goal of living apart from mainstream society. Away from all the chemicals which pervade every single area of 21st Century living.
The doctor in St Louis had said to go somewhere we can find "Clean water, clean food and clean air" and avoid everything that is in common use in gardens, homes, malls, towns etc, and especially products which contained neuro-toxic and/or petrochemically derived substances.Our lives have been irreversibly altered.

As a direct result of the injury, we have to live as chemical free a life as possible.

So, here’s a little exercise for you. After you’ve read this walk around your home and remove every single chemical based thing in it.  (Mentally… for now).
  • Shampoo… many contain paraffin (kerosene, deoderised of course)- did you know?
  • Conditioners… same as shampoo.
  • Showers gels
  • Body/hand/face lotions.
  • Perfumes (cheap or expensive, full of toxic stuff.)
  • Most toothpastes.
  • Deodorants.
  • Surface cleansers for kitchens or bathrooms.
  • Furniture cleaners and polish.
  • Cosmetics… all of them. For example, mascara is full of mercury and you’re slatherin that on/near a mucous membrane. Most cleansers, foundations, lipsticks etc, contain other nasty petrochemicals which may cause tumours or are neuro-toxic.
  • Dish-Washing up liquid.
  • Majority of washing machine/laundry detergents.
  • All fabric conditioners.These cause the worst reaction at times, tremor, breathing problems, headache, blurred vision.
  • Perfumed candles.
  • Perfumed room fresheners (all of them including potpourri). Febreeze cause him really awful problems.
These are just the ones I can recall off hand.

Now imagine you would like to visit us.

We’d have to ask you to prepare months in advance by changing your clothes washing habits and using a non toxic detergent, no fabric softeners allowed at all- sorry. You’d have to source chemical-free shampoos, conditioners and body creams, and not bring brand new clothing with you - they off gas formaldehyde and dyes.
When my Mum came over to visit us in the summer of 2007, I had to wash every item in her suitcase before she could wear it in the house. Even then, it still caused problems as fabric conditioner is designed to linger. Hopefully you'll be a non smoker too. Still want to visit?

Now how about us visiting you?

Get rid of any/all air fresheners; all the same above with the shampoos etc, not use any surface cleaners for at least a week other than 5% bleach solution. Make sure you do not purchase any new furniture, carpets, rugs or clothes for at least 6 months prior to us dropping by. Can see how this makes socialising a bit of an adventure?

Miscellaneous Socialising.

Restaurants are an assault course. Hopefully the server won’t be reeking of perfume, or a bunch of over-cologned people don’t get the table right beside you, or the restaurant uses automatic air fresheners, or house-keeping hasn't just cleaned out the lavatories with scented cleansing products and the food isn’t full of additives… and on and on and on ad-infinitum.
I haven’t even got to food yet, have I? All water has to be clean and filtered. All food has to fresh, non processed and organic. A scoosh… unless you live some where (eg the American Midwest) they don’t give a monkey’s fart about what they eat. By simply removing all non-organic and processed food from the diet, Bill's health began to improve dramatically, as toxins were being removed gradually and not being replenished by continual dietary top-ups. I think our diet is on the whole, much healthier now. And it would be hard not to agree, major alterations have been achieved, and maintained.
There is, of course, always the down side. We've been unable to go to the cinema for years. Parties and large gatherings are what I refer to as Chemical Pinball, so we don't. Even meeting up with friends or family is a fraught affair.

Before you start thinking "major pay-out/compensation".

Let me just say we had to go to court to get basic workers compensation, no lump sum, no massive pay out. The employer, The City of Kansas City denied liability despite a paper trail as long as the Missouri River, and claimed Bill was malingering despite the evidence of two very eminent doctors in their field.
I'll just remind you that Bill was only 46 at the time of the accident. We had our future all planned out in front of us. Obviously, that got lost in the struggle to pay for all the doctors and investigations ourselves. None of our personal medical insurances would wear it as this was an industrial accident, and as the employers were denying liability, Workman's Compensation Medical care wouldn't pay either. We were approximately $25,000 in the hole on medical care and investigations, accommodations and travel expenses!
We had to sell, to all intents and purpose, every one of our personal possessions to pay.
And that's why we stay on a boat. Ours choices were limited. Sit and moan and watch him die, or actually do something to make a future possible. Sitting blaming others and bemoaning our fate would have achieved or changed nothing.

My only additional comment would be this to my friends and family living in Scotland, England, Wales and Northern Ireland. Cherish the institute that is the NHS. It is far from perfect, I know from first hand experience - I was a registered nurse in a major Glasgow hospital - but, if we had had no money and no access to money, my husband Bill would without doubt be dead under the private USA system.
I believe the NHS would have dealt with this very unusual and rare type of brain injury effectively,. It would have been a learning curve for us all. But at least I think I would have had better support.

A Little Post Script:
Dr Kilburn told us the amount of damage caused by the injury could have been limited by the administration of 2 x $20 injections within 48 hours of the poisoning incident and given 1 week apart. This is protocol on the west and east coasts of America and in UK and most of Europe. Missouri and the Midwest had never heard of these injections. Following Bill's accident and the City of Kansas City losing the court case and found liable, this has since become protocol there too.