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Author Topic: Epilepsy with some of Rosalindís experiences and some details:  (Read 30798 times)

Offline neilep

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What do you know or have experience(s) of epilepsy as I'd be
interesting to read them.

BTW It took me guts to post this thread but I am so glad that I did.


We're so glad you did...

WELL DONE !!
 

Offline rosalind dna

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What do you know or have experience(s) of epilepsy as I'd be
interesting to read them.

BTW It took me guts to post this thread but I am so glad that I did.


We're so glad you did...

WELL DONE !!

Thanks Neil and so am I now.  ;) [8D]
 

Offline Andrew K Fletcher

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The Founders of Child Neurology be Stephen Ashwal.
important; variations in barometric pressure and climate, particularly low pressure and hot summers, were thought to increase the incidence of seizures, Heat, Baumes said, stimulates the nerves, and high humidity, combined with heat, sends many "exhalations" into the air that may adversely affect the body. Thus, people who live in warm climates have a general disposition to convulsions, especially of the stomach and intestines,"

Sometimes it is worth taking a look at the old masters to see what they have written, as there analysis was seldom masked by people using drugs to dampen down the symptoms rather than trying to find out what is causing the problem in the first place.



ALL RIGHT, FACTS,....I HAD ABOUT 4 OR 5 S. TODAY. I FIGURED OUT THAT THE HUMIDITY WAS INDEED TRIGGERING THEM.

I TALKED TO SALLY. I WAS EXPLAINING ABOUT POST ICTALS. I WAS JUST STARING AGAIN........BUT I FELT LIKE I COULDN'T MOVE. WONDER IF I WILL REMEMBER TALKING TO SALLY. I THINK THE HUMIDITY IS CAUSING MORE S. MY HEART IS NO, I AM SPINNING. EVERYWHERE, OR SO IT SEEMS.

WHERE I LIVE, BUT DIDN'T VENTURE ACROSS ANY STREETS. THE HUMIDITY IS CAUSING THE PAIN AND STIFFNESS, WHICH IN TURN SEEMS TO CAUSE THE WEAKNESS.......I THINK.
MY HEAD AND JAW ARE TOLERATING THE HUMIDITY BETTER THAN THEY HAVE IN MORE THAN ABOUT 20+ YEARS. I HAVEN'T BEEN ABLE TO OPEN A WINDOW, MUCH LESS STAND OUTSIDE AND FEEL THE RAIN SINCE MY SON WAS IN K. IT FEELS WONDERFUL. I DO LOVE RAIN. I AM WORKING ON CONQUERING THE FEAR I HAVE CARRIED THESE LONG YEARS, WHEN THE HUMIDITY CAUSED SO MUCH PAIN, I WOULD END UP IN BED WITH A MIGRAINE, NOT ABLE TO OPEN MY MOUTH OR TOLERATE THE PAIN IN MY NECK.
WEDNESDAY JULY 18.
NO SLEEP AGAIN LAST NIGHT. AN INDICATION TO ME THAT I AM GETTING SICK AGAIN. WOKE UP IN P.M., EYES ALL SWOLLEN....LUMPS BIGGER, LUMPS ON BREATS TENDER.
NO S. ACTIVITY TODAY.DID HAVE TROUBLE TPYING AND TRANSPOSING LETTERS IN WORDS. IT SEEMS TO COME AND GO. WENT OUT FOR A SHORT WALK JUST NOW. MONSOON SEASON. HUMIDITY DOES CAUSE ME TO FEEL LIKE I AM SPINNING.
Found this mention of humidity being a trigger
http://www.epilepsy.com/node/970324


Then I found exactly what I was looking for. http://www.epilepsy.com/node/965976

By jacky99 on Wed, 06/20/2007 - 9:46pm
Re: Re: Temperature Triggers?
I moved from the sunny warm desert of Las Vegas, NV where I slept on a heated waterbed with the AC on (for others living there) to the humid, frozen hell hole of Erie, PA due to family reasons. My seizures went from almost non-existent to regular enough to set your watch by, and getting worse. The cold winters and humid summers bother me more than 100 plus degree summers there ever did. And, I worked mostly outside in the sunshine. If I had the money, I'd leave now! And my reason would be, for my health. This part of the country never bothered me until I lived in the desert for more than 10 years. The warm, dry air of the desert really made a difference!
A reply: Re: Temperature Triggers?
hey i have had some seizures due to heat. I live in a town that usually doesn't get to hot. But we are going through the drought. I have not had one for almost two years..........and I still drive by myself. I hate the fact I have them because I have to watch for the signs. heat is diffently a trigger along with high intake of chocolate, caffine, no meds, lack of sleep, severe headache, and probably alot more but those are mine.
I hope I helped you out some how!!
By autumn18 on Fri, 06/15/2007 - 7:52am
Re: Re: Temperature Triggers?
i had one just two days ago that was triggered from walkin from our hot kitchen into our cold bedroom (we just got a bigger better AC) and back into the kitchen. when i got into the kitchen i felt like i was a wax sculpture melting and the linoleum floor was melting to my feet through my sandals. i swear unless you have seizures none of these sensations make sense.
 

Offline rosalind dna

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Andrew good post and it's not exactly relevant to me as a middle-aged woman also when I got the first seizure, I was 15 or 16 that is something that I have
"conveniently" forgotten as we do.

But yes any TNS members, who may have kids with epilepsy, that it is important
although I wrote this thread from my point of view and age as an adult.

I am learning from you as well and every time that I have
seizure(s). {sadly}

I have to do my own cooking so whether or not it's humid that
is one of the many things that has never bothered me YET !!
In fact I can see, the relevance to a condition that is to do
with the way that the nerves in our brain.

This is my way of explaining it. "When the seizure happens it's like a lightbulb
which fuses before its filaments go and we have to change it
or a brainstorm.
But the medication is meant to control this. it does mostly.

« Last Edit: 17/05/2008 15:15:59 by rosalind dna »
 

Offline Andrew K Fletcher

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The writer mentions he moved due to family reasons, not that his (s) happened because of them.

This post is very important because it states that a dry desert with air conditioning prevented seizures went from almost non-existent to regular occurrences.

This follows the same path as many other neurological conditions that I have been researching and testing my theory about how the nervous system is being influenced by gravity. In doing so, I have been able to predict some positive outcomes and have been proved right time and time again. In fact, I can safely say that low humidity is definitely the way to go, so having a dehumidifier running in the home when you are there would greatly assist you and lesson the numbers of (S) More to the point it would be relatively easy to test this and has additional bonuses by reducing the cost of your heating, because dryer air warms easier than High humid air.

My theory is that evaporation from the body changes the density of fluids and gravity must act upon those fluids and in doing so generates circulation by drawing solutes down the tubular vessels of the body.
Inclined Bed Therapy is designed to make use of these density changes due to respiration and evaporation, which is obviously enhanced by a dryer local atmosphere.

Leprosy for another example is predominantly found in very high humid areas such as steamy river valley areas in the tropics. Slowing down the circulation enables infectious organisms to invade the tissue and I suspect this is the main reason that limbs are lost and nerve endings fail in this condition.

Multiple sclerosis, again humidity is a very important factor.

Cot deaths and Sudden adult deaths again closely follow the same humidity related pattern.

Healthy people in humid conditions become listless and can experience a complete shutdown in these conditions.

A person living in an area close to sea level, or in a river valley area generally has poorer health. Leslie Munroe

Publication history
Issue online:
10 Aug 2005
Received 3 January 1996; revised version accepted 11 June 1996. (An earlier version was presented at the Geological Society, London, on 18 July 1995.)
 
European Journal of Soil Science
Volume 48 Issue 1 Page 1-17, March 1997
To cite this article: L.J.A. MUNRO, E.C. PENNING-ROWSELL, H.R. BARNES, M.H. FORDHAM, D. JARRETT (1997) Infant mortality and soil type: a case study in south-central England (with discussion)
European Journal of Soil Science 48 (1) , 1Ė17 doi:10.1111/j.1365-2389.1997.tb00179.x
Infant mortality and soil type: a case study in south-central England (with discussion)
∑   1Flood Hazard Research Centre, Middlesex University, Enfield, Middlesex EN3 4SF, UK aDepartment of Geography, Anglia Polytechnic University, East Road, Cambridge CB1 1PT, UK
Summary
 
We have analysed the differences in infant mortality for 1981 to 1990 in areas of contrasting soil types in south-central England. The soils overlie rocks of varied lithology and hydrology, ranging from porous and permeable Chalk and limestones, to the generally wet and impermeable Oxford and Lower Jurassic Clays. The study area comprises 504 administrative wards, for each of which the soil has been classified as being predominantlyĎWetí, Ď Intermediateí or ĎDryí, depending on the degree of seasonal or periodic waterlogging. The soil classes used are those mapped by the Soil Survey of England and Wales and relate closely to the underlying geology. We find proportionately more infant deaths on theĎWetí soils, and a gradation towards lower infant mortality rates on the drier soils. Overall, infant mortality on theĎWetí soils is 31∑9 percent greater than on theĎDryí soils, for reasons that remain unexplained. This relation between infant mortality and soil moisture remains after the effect of social class has been removed.
 

Offline rosalind dna

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Andrew what does the desert humidity have to do with me, I live
in a rather damp London as it is today on a hill and at the
bottom of another one with trees around me.
The only damp I get is when I am in the bath or rain.

Also when I cool my home then I open the windows as it's easy and free !!!
I am writing from my very own experiences not someone else's
about whom I have never heard of humidity affecting epilepsy
and I would have done so by now. Sometimes I wonder where these other ideas come from. Out of "experts" heads, but I would think
of myself as more of an expert in epilepsy as the consultants
don't have this condition.
 

Offline Andrew K Fletcher

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The desert's lack of humidity has a lot to do with human physiology. For example in the UK the lowest rainfall is in East Anglia, in fact East Anglia has near desertification in areas to give you some idea of the situation it has about half the annual rainfall of Jerusalem. People live longer in East Anglia than anywhere else in the United Kingdom.

The following was found in the Met Office Statistics:
Mean temperatures generally close to average across the northern half of the UK, but slightly above average across the southern half of the UK. Rainfall generally above average and well above average across parts of East Anglia and SE England. Provisionally, the wettest March over England since 1981,  ďrainfall in March 2008Ē

You mentioned that it was sunny. Sun following heavy rainfall means very high humidity will inevitably be present.

I can see you are resisting a different look at the possible triggers for epilepsy. I included some pointers from ďpeople you donít knowĒ who have kindly provided some insight into their own triggers relating to humidity on other forums, which follow a predictable pattern.

I can see that you have your own deep-rooted views about this condition and believe that you must be an expert having dealt with this condition for many years. So if you feel I have wasted your time, I am sorry and will not post any more on this thread.
 

Offline rosalind dna

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Andrew
Do please carry on posting/contributing on this thread. It is not for me to say otherwise.

Also there is one thing that I forgot to mention which is that just before and
during the seizures, it's odd but my temperature goes up and down even though
in reality, I am warm and comfortable. I just cope with it and don't worry there. Not sure why but it's happened for so many years that now I just sadly
take it as "normal" so put up with it.

I think that your posts/ideas about humidity are interesting which has given me
something to think about some of the reasons for the triggers for my seizures
but it's mainly as I've already said, Stress, being over-tired, depression which can occur more in epileptics because of the medication, seizures etc.
No I don't agree there but the epilepsy.org site mentions it.

I know it's been the wettest March for a while and spring this year too.
If it is warm then I turn the blinds facing the windows or the room would
be so hot that I would burn. It's south-facing.

My views are as you've said again "deep-rooted" in experiences nothing else
and I am always willing to find out more about epilepsyy as I did research
my initial post before I even copied/pasted it over from my Word file.
As ever I am careful with research.

Rosalind
 

Offline Andrew K Fletcher

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Hi Rosalind, thanks for putting up with my questions.

The last bit of information is very interesting. Fluctuations in temperature, particularly perspiration on the skin as a cold sweat are indicative of an increase in humidity. Obviously an illness can cause this to happen too, but then one could argue has the humidity caused the illness in the first place?

Ever seen a mattress coloured brown with the sweat stains from a person who perspires excessively? Mattresses become stained because when we lay in a flat bed our body temperature fluctuates. Our own mattress was thrown out because it became discoloured and so was the one before it.

Since we tilted our bed over 13 years ago our mattress has remained free from sweat stains, we no longer overheat laying in bed or feel cold in the winter, our body temperature appears to be regulated better. This is also the case with people who have spinal cord injuries and other neurological conditions.

 The only difference now is that our bed is now elevated 15cms at the head end. Even when we have been burned by the sun and have lingering memories of being painfully burned before and having a terrible time laying in bed, we no longer appear to suffer overheating from the burns as we did before. We still burn, and yes it hurts, but no where near as long or as intense as it has done before.

Our suntan lasts throughout the winter, whereas when sleeping flat it would last a month or two at the most and skin would peel off.

Maybe our circulation has improved in the dermis and epidermis? ( I am currently involved in researching psoriasis) and more to the point we have already observed some pretty remarkable improvements in psoriasis using Inclined Bed Therapy (IBT). Maybe avoiding a flat bed optimises our metabolism and main circulation too? 
Maybe the nervous system responds to the same gravitational stimuli?

According to inevitable density flow in the body due to evaporation, High humidity and poor posture maybe all that is needed to shut down the nervous system. This certainly is the case with people who have multiple sclerosis, and several studies have identified pockets of people with MS living in high humidity environments like sea level coastlines and river valley areas.

But first we need to test lowering the humidity in the home of a person who has regular seizures to see if they can be reduced by regulating the amount of water in the air. My guess is that we will be successful. The second thing is to see if avoiding a flat bed is also advantageous and I suspect combining the two together will prove to be fascinating.

Andrew
 

Offline rosalind dna

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Hi Andrew
Thanks for your questions and there are definitely making me think but if I have my bed tilted then I would fall out of bed. Also if I know that I am
going to have a seizures as I have mentioned earlier in this thread, I
usually go into my front room and lie in the middle of the carpeted and concreted floor with no obstructions in it to stop myself getting injured.

Yes I have seen a mattress with brown-coloured stains, not mine although.
But I thought if you had a bad back that you should sleep on a flat, hard mattress not a tilted one. If I tried to sleep on a tilted bed then I wouldn't sleep at all. It was I am used too. Bit late to change that one now.

My home is on a slight tilt being on a steep hill anyway. I am so used to my home and love it too. The only things that I can see around is roads, concrete no water other than the rain or in home usages.
I have had less amount of seizures since I have been living here apart from the 15 that I had 2 months+ ago. They were the most seizures ever. I do know for absolute sure that stress and being overtired were the main reasons for them.

My late Stepmum had MS, but she would not research it or accept NHS treatment
and used Homeopathic treatments instead. I had wondered why she felt like this as it wasn't genetic.

Ask away. It is fascinating to read everyone's ideas./
Rosalind

 

Offline Andrew K Fletcher

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Your late Stepmum live near a river in a valley by any chance?
 

Offline rosalind dna

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Your late Stepmum live near a river in a valley by any chance?


Yes I think that she may have been brought by a river in her childhood but my late Stepmum didn't start to get the symptoms of MS until her mid-twenties when she was living in S. London by
a railway. When she married my Dad then the nearest water they
had was the usual domestic things, bath, washing up etc.

Andrew why do you ask? 
 

Offline Andrew K Fletcher

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South London. While there is litle vegetation to transpire moisture into the air, there is a river and London therefore is fairly low level in relation to the surrounding areas, forming a basin where humidity will become trapped. The good news is that all of the concrete and tarmac will heat up quickly and like the desert sands will generate thermals that quickly evacuate the area of moisture, however the upward flow will inevitably drag more moisture in to replace the air that has risen in the thermals. Any moisture from atmospheric sources will inevitably remain in the basin much longer than the surrounding areas of London.

Now here is the man made additional vehicle generated humidity, polluted with toxic emissions.

When there is little up welling in the atmosphere, London is in trouble from not only the massive amount of exhaust pollution, but from the hot water saturated exhaust emissions that equate to around 1 gallon of water vapour to 2 gallons of burned fuel.
Add to this the massive emissions from the exhausts of two very large and very busy airports, and we can all see the water trails behind jet aircrafts in the sky, so there is no room for disputing these figures.

But just in case anyone doubts them: http://www.military.com/NewsContent/0,13319,78169,00.html

 The Humvees in the demonstration program are, from the outside, indistinguishable from other military vehicles, except for a small water spigot behind the right rear wheel. Beneath the metal panels of the truck bed is a system of pipes and filters, which can collect water whenever the engine is running, at a rate of one gallon of water for every two gallons of fuel burned. 

But cars, vans, motorcycles, jets, boats, trains and trucks are not the only vehicles that emit water vapour.

Multiply these figures by the numbers of vehicles, including those by air and water to the equation and it is not long before one realises that living in London at ground level might not be the wisest move anyone could make. Living on the street in any major city could dramatically affect ones health.
 

Travel Patterns in London
∑   In 2006, on an average weekday 1.11 million people entered central London during the morning peak (7am to 10am). This was 4.6% higher than the previous year.
∑   The proportion of people entering central London by car fell by 7%, representing only 7% of total journeys.
Yes even humans and animals contribute to the humidity factor, along with industrial processes, domestic activities, irrigation of local plants and trees, sewer outlets, sewage farms. All add water to the air and the more people we condense into a basin area the greater the problems with humidity.
 

 

Offline rosalind dna

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Andrew

That is interesting but when my Stepmum married my Father, she came to live in North London near a park, where I grew up, but she died of cancer not MS. (long story)

As just up the road from me there's a resovoir (sp) and another one that is about 2+ miles away from me. But I have the windows open and my home is away from the busy road so quiet and leafy with a SSSI at the back of my garden. So it is cool in the summertime with trees, right round
the edge of the garden.

As I have said I can't drive. Although I walk where I can that is a healthy way of getting around.

Also when/if it snows in London then my area gets the snow first as it's higher than other bits of it.

I do know about toxic emissions having lived here all of my life and I love the city. Also remember the former London Mayor's Congestion Charge which was "supposedly" meant to make the traffic jams go. It has made it worse. My home is not covered by the CC.
http://en.wikipedia.org/wiki/London_congestion_charge


But what about the humid days that we get when it's so cloudy and the sun can't burn through to clear it all??
 

Offline Andrew K Fletcher

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A good investment would be to obtain a humidity meter, there are a number on the market for as little as £1.99 although these are not that accurate. Then keep an eye on the meter and when it goes beyond say 65% use a dehumidifier and close the windows and vents until the humidity drops again. This was you are not running a dehumidifier when there is no need. Alternatively there are dehumidifiers with a humidistat mechanism that switches the dehumidifier on when the humidity rises above a predetermined level.

Better still to confirm this one way or the other wait until your next S and make a note of the humidity. You might be in for a surprise.

I knew there would be water close to your home :)
 

Offline rosalind dna

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I cannot see the point in investing in a dehumidifier when I can easily open my windows and in fact it's healthier to have fresh air circulating through our homes than the electronic version of it. BTW I have my windows open NOW.

BTW it is safer when I have a seizure than to have a machine going that I might fall on then get hurt. last one was very very recently.

Also I have 2 cats and they would sniff at anything new so get hurt whereas they've grown up with windows and vets bills are pricey.


Also I happen to know my epilepsy seizures better than anyone as it is me they happen too. So I reckon that I know the reasons for them and as I have said before over-doing things, too much stress, being over-tired even not eating properly. But humidity is just part of life and I have grown up in London so I know all about the concrete, pavements, buildings and accept it as part of my life from day    1.



What is wrong with open windows and fresh air???

 

Offline neilep

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Thank you for this ongoing thread Rosalind.....

Have you ever had a seizure when showering...?...or even worse....... when in the bath ?....could you drown ?
 

Offline rosalind dna

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Thank you for this ongoing thread Rosalind.....

Have you ever had a seizure when showering...?...or even worse....... when in the bath ?....could you drown ?


Neil Thanks for your good questions and I do not have a shower but
once I nearly had one in the bath only I was quick enough to pull the plug. grab the towel etc.

Now that was scarey and when I think that something is up then I do not risk having a bath.

Yes I could drown as I would be unconscious and in fact it is possible
to drown in as little water as just 2 inches deep.
 

Offline rosalind dna

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Just thought that you might be interested to see how epilepsy was
regarded as in historical data. In fact it goes back as far as the New Testament.
Not well and up to the middle of the 18th - 19th Centuries it had been thought of as a condition sent from the gods as a punishment to the person. No way.

Also they were given Brimstone and soap to wash it all out of the person. 

http://www.who.int/mediacentre/factsheets/fs168/en/
http://www.epilepsy.com/epilepsy/history
 

Offline Andrew K Fletcher

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http://www.blackwell-synergy.com/doi/pdf/10.1111/j.0013-9580.2005.49504.x
Found this Neil.

Rosalind; Open windows and fresh relatively low humidity air is fine. Open windows and a relatively damp home is fine.

Open windows during high atmospheric humidity and you might find yoursel experiencing another S.

Having a hot shower is a great way to increase the humidity in the homw.

A dehumidifier used on days when humidity in the home is high will only rectify the problem if the windos are closed while it is operating. Having the windows open and running a dehumidifier will result in you trying to dehumidify the whole world!

Thank you for this ongoing thread Rosalind.....

Have you ever had a seizure when showering...?...or even worse....... when in the bath ?....could you drown ?
 

Offline rosalind dna

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Andrew

I prefer to have the windows open as I would have to have several de-humidifiers in my home and as I have repeatedly said that it's FREE to open
my windows. the air is on damp when it rains !! LOL
I do not own or have a shower as I had replied to Neil's good questions !!

It is also nice to see the butterflies and fresh air come in through the windows.

I have had another seizure recently and had the window OPEN also did the same thing that I have mentioned in other posts, Stayed in my sitting room while
it happened no injuries and I have encountered this many times.

How can I make note of anything let alone a seizure when I am completely
unconscious.

BTW I heard this type of thing in the 1970s from my then doctors and no
doctor would go on and on about Humifidying or damp in the home now !!!

 

Offline Andrew K Fletcher

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Andrew Bangs head against wall.
 

Offline rosalind dna

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When I have had a seizure or seizures then I won't watch or use
either my PC or my TV because sometimes the slight flickers from these screens could trigger new seizures, but I am fine with the radio and enjoy that more.


Any more questions are welcome thanks
 

Offline Carolyn

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Andrew Bangs head against wall.

Andrew, hasn't anyone ever told you that causes headaches?
 

Offline Carolyn

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Rosalind, thank you for the very informative and interesting topic.  All the questions I had have already been asked by Karen & Neil, but if I have any more I'll be sure to ask away!  Thanks again for all the info!
 

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