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"MS is an organ specific condition", said Rex at last year's AGM.
But, the Brain...it's quite an organ: two major medical professions
(specialists) deal with the brain - Neurologists and
Psychiatrists. (How come? Think. hard)
Use this as a "koan", a meditation, a mind teaser. Don't be too
quick to find a definition, a solution, an explanation.
Of course, it's based on our mind/brain split in thought, but who
made that one up? Someone did. Is it double vision? One eye is closed
at a time. Or should we be using a stereoscopic lens. (Like looking at
aerial photos. Two photos of the same place are gradually brought together
under the stereoscope. Suddenly, they coalesce, and, wow! The mountains
leap up and hit you in the eye, the valleys fall down and the whole scene
almost comes to life!)
Disclaimer
The writer of this column (a person with MS) has neither neurologic
nor medical training.
I do have training in geography and theology, which will sometimes
be obvious.
And now for something completely different.
Have you ever thought about the difference between cure and heal? Listening to the scientists you can see that they are talking about finding a cure. That is their job, it's what they are on about. The medical people that we see are hopefully also on about healing. That's their job. But healing is also our job. (See last month's book reviews.) We are the only ones to live in our own bodies. Our body is primarily our responsibility. Healing is also about much more than our body. It is about our life - and that is our responsibility, difficult as that may at times be. Life is our responsibility and also a choice. (Check out Deuteronomy 30:19 "Choose life that you may live.") [We are alive until we die. Remember too that death is a part of life not just its end. It is also a part of healing.... but not a part of "cure".]
C.
Back to the beginning: Brain/mind (and mind/body?). Antonio Damasio's book "Descartes' Error" (1995, Picador) is really good. He is a neurologist who also writes about neuropsychology. Descartes' error was to equate mind with thinking. Damasio includes emotion and feeling. (More next month.)
'Bye, luv, Linda
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The book: Damasio; Descartes Error:
http://serendip.brynmawr.edu/bb/damasio/descartes.html
Reviews:
http://serendip.brynmawr.edu/bb/damasio/Damasioreview.html
and: The Phineas Gage Story?
An essay:
http://www.gac.edu/Academics/philosophy/kaaren.html
To buy the book (not out of print in USA)
A mail order book shop
http://www.amazon.com/exec/obidos/ats-query-page/1902-9025224-270960
And in general Brain and behaviour:
http://serendip.brynmawr.edu/bb/
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I was hiding; hiding in the National Library, licking my wounds after speeding through a school zone. First I had a coffee to stop the bleeding, then went to the periodicals for a bandage. The Lancet seemed to be a good idea at the time. [Vol. 347; Feb. 24th p527] On the shelf next door there was Nature [Vol. 379, Feb. 22nd pp 677 & 733]. I settled down for a quiet browse to calm my nerves. Both journals had articles about smokers and Parkinson's disease. It seems that people who smoke don't get Parkinson's nearly as much as non-smokers. [On average, half as much.] The question is: What's going on?
The articles are technical, very technical. But what is involved is "the brain", that organ that we all know about. I always get a little something from ploughing through these things. Do you want to join me? Fasten your seat belts:
What they were looking at was the 'inhibition of MAO B.' This is the stuff which 'oxidases' mono amines like dopamine. Yes, I know, its a lot of gobbledegook. Let's take it slowly. Do you remember double negatives (from English or Maths)? Two 'no's mean 'yes'. "Inhibition" and "oxidase" both mean 'getting rid of.' If you get rid of the stuff (MAO) which gets rid of dopamine, then you have more dopamine. It isn't being got rid of. [Take it slowly and think. That's OK isn't it?]
Now, dopamine. Dopamine is "a neurotransmitter implicated in reinforcing and motivating behaviours as well as movement." (a direct quotation from Nature Vol. 379.22 Feb. 1996, p733) It's one of those important chemicals in the brain that are involved in signals being sent. (neurotransmitters) If you've got Parkinson's you haven't got enough of it. (Ever read or seen "Awakenings"? [Oliver Sacks the doctor, played by Robin Williams.] That was my introduction to neurology.) If you've got Schizophrenia you've probably got too much dopamine (plus who knows what else). That's all being very simple about it. In MS?, it probably depends. I know what's happening with me, but that's my story* and remember the disclaimer:
Disclaimer: The writer of this column has neither medical nor scientific training. Her computer training is 25 years out of date (yes, they were around then). and word processing training is almost zilch. But the geographic and theological training will at times be obvious.].
*My story: I don't smoke but I do take an MAO inhibitor (a
little red 'smart pill'). MS has hit my "monoamines" like it does
for quite a few of us. (Not everyone.) So, I read articles like these ones
now.
Is the message from these articles that if you smoke you get more
zap and some protection from a not nice neurologic condition. [are there
nice ones?] Well no, maybe smokers get addicted because of something
in their make-up; maybe this helps explain why smoking is a "gateway" addiction.
(Ever noticed how many of your addict friends smoke?) It doesn't stop lung
cancer, or giving lung cancer to the people around you. It may point
to a pharmacological* way to help people stop smoking. I thought
it was an interesting neurological aside.
*pharmacological - taking pills to fix things.
Which brings me to Damasio's "Descartes' Error". ...[next month? will I ever read a book again? The new toy (a computer) takes up so much time.. and I'm not even on the Internet yet...] and that was last year.
And in May 2000 this came out of a neurology conference:
"Researchers in the Netherlands have found evidence that higher
consumption of coffee and alcohol is also associated with a lower
incidence of Parkinson's. This, say the authors, suggests that
smoking and other addictive behaviors may be a result of the
same brain chemistry that helps prevent Parkinson's. Results of
the study were presented at the American Academy of
Neurology's 52nd Annual Meeting in San Diego, California."
The study author was Patricia Willems-Giesbergen, MD, a researcher
at the Erasmus Medical Center in Rotterdam.
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Have you noticed in the new Star Trek that they still use the same transporter system? The command, "Beam me up Scottie", hasn't changed through the generations. Maybe it was too good an idea to change. Too good an idea for Science Fiction that is. The physics of the show has had a pasting recently. The transporter is totally "pie in the sky" and not possible even in the best of all possible worlds.
Other inventions are in the pipe line or nearly here though. The
computer activated by voice commands is used by one of our members. Voice
recognition programmes are on sale now, in Canberra ($699). I wonder how
many nursing homes have them?
The second series of Star Trek seemed to have a writer who was interested
in things neurological. But, there is a time-honoured science fiction ploy
used in Star Trek (all three) which is not neurologically correct. Not
correct, that is according to Damasio. [Antonio Damasio "Descartes'
Error" (1995, Picador) out of print!]
The problem is with Dr Spock and any other Vulcans, and with Data.
[For those who don't watch this mind blowing, mind softening media extravaganza;
Vulcans think, very logically: They do not feel and are very scathing
of other emotional races. Data, an 'android' cannot feel. He computes and
thinks at amazing speed, and tries, desperately at times, to be 'human'
but somehow, he can never quite "get the point"]
Damasio's main idea is that it is through feeling, through emotion,
that we think and organize our lives. Like every fascinating neurologist
who writes, his idea is based on people that he knows; people who are his
patients; people with specific neurological injuries.
Fascinatingly, he starts with the history of neurology and the case
of Phineas P. Gage. If you have read any general books on the brain, you
may have already heard of Phineas Gage. In 1848 this 25 year old foreman
of a railway gang, had an iron rod (I had read of it being a crow bar)
blown through his cheek and out through his brain. Phineas survived, did
not even lose consciousness, and entered neurological history. Damasio
has all the fascinating detail. The detective work was studying Gage's
skull and trying to work out just what brain damage he suffered. Because
damaged he was. He could still walk and talk but he lost many social skills
and never again held down a decent job. His personality was totally changed.
And it is treated in
very full detail at http://neuroscience.miningco.com/
which
is a fascinating neuroscience site that I have only just found (June 1998).
The damage was in the ventromedial prefrontal region. Just
behind the middle of the forehead is how I understand it. Damasio's own
patients with this site damaged can think logically, converse well, have
no motor or sensory problems,
but ... they can't gamble, can't take risks, or don't know when
they are taking risks. They can't get back to work. Moreover other patients
with similar problems had damage elsewhere.
What is new in Damasio's work is making the connection between feeling/
emotion and reasoning/thinking. Vulcans must have a very different neurology
from humans.
So the next time you are feeling flat don't be surprised that you can't make any decisions. Just get out a good movie and tickle your emotions.
Disclaimer: The writer of this column (Linda Anchell) has neither
medical nor scientific training.. Star trek is almost the only TV show
that I regularly watch.
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The book: Damasio; Descartes Error:
http://serendip.brynmawr.edu/bb/damasio/descartes.html
Reviews:
http://serendip.brynmawr.edu/bb/damasio/Damasioreview.html
and: The Phineas Gage Story?
An essay:
http://www.gac.edu/Academics/philosophy/kaaren.html
To buy the book (not out of print in USA)
A mail order book shop
http://www.amazon.com/exec/obidos/ats-query-page/1902-9025224-270960
And in general Brain and behaviour:
http://serendip.brynmawr.edu/bb/
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Superman didn't fly when Christopher
Reeve fell off his horse last year. In fact, Christopher (the actor
who played Superman) is lucky (sic) to be alive. His spine broke
at the two vertebrae right at the top. A massive dose of methyl prednisolone
reduced the swelling at the site of the break. This reduced the extent
of the injury to the spinal cord. A damaged cord swells and the spine constricts
it ("like a tourniquet"). It is injured even more if it presses into the
broken bone.
Reeve is injured, terribly. He breathes on his own only a few hours a day. Otherwise he uses a respirator. But, he talks the US Congress into granting an extra $US12million for research. He has huge plans for raising more.
But a Sunday Telegraph article about Reeve (June 9th 1996, p 131) surprised me when myelin came into the story. These injuries usually cause demyelination and consequent scarring. Research is finding a way to remove the scar tissue and regrowing the myelin protective coating. Then the hard work begins to regrow the nerve itself. The suggestion is, that maybe in ten years it will happen.
Remember the days when you had never heard of Myelin? Now I'm hearing
it almost everywhere. (gross exaggeration)
The film "Lorenzo's Oil" is about a demyelinating disease. Lorenzo's
parents with amazing tenacity and amateur research stopped their boy dying.
Their oil now stops it developing in other children. But the film ended
with Lorenzo's agonizing need for remyelination. Lorenzo
is another individual whose story is fuelling research. [So are you. Did
you know?]
Maybe it won't help us much. Anything that's remyelinated can always
be demyelinated in MS. But there are other people out there. They've had
their accidents, their measles, they got their oil, just no myelin. Those
totally focussed researchers out there might actually be on the track of
something that will help a lot of different people.
Meanwhile, Christopher Reeve spends hours with helpers moving his muscles making sure they remember what to do, expectant that life will be quite different in ten years time. L.A.
and there is a story from Sydney that a man is strengthening his legs before having an implanted computer that will enable him to at least stand, and perhaps walk. After ten years as a paraplegic from an accident, there is hope that he will at last be able to walk down the aisle: as he re-enacts his wedding day! (TV and newspaper reporting of breakthrough Sydney, Australia, work May 28th or 29th 1999.)
LINKS:
Christopher Reeve:
http://www.nd.edu/~asiefrin/reeve.htmlhttp://www.reeve.uci.edu/~reeve/index.html
The Myelin Project:
http://www.myelin.org/index.html
http://www.myelin.org/rn_lpn.html
Lorenzo's Home Page:
http://www.myelin.org/rn_lpn.html
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New Scientist of the 3rd August 1996 (buy it at your local newsagent), has a surprising number of goodies.
Superman's story continued (p16). A professor of neurosurgery comments
(Science, vol. 273) that the spinal cord regrowth in rats was in cleanly
cut nerves. Most people with spinal damage suffer crush injuries. How significant
was the massive dose of methyl prednisolone that Christopher Reeve had
I wonder? This was the dose to stop damage from the bruising and inflammation
that happens after the break itself.
Another comment, from a Director of the Spinal Injuries Association
in London, was "Not all the money for spinal injuries should go into high-profile
research of this type. There's also a need for resources so that people
living with spinal injuries now can live happy, useful lives." [Perhaps
a comment we could all learn from.]
On page 17 there is a special sentence: "It takes guts to beat serious
autoimmune disorders like multiple sclerosis and rheumatoid arthritis."
Sounds good doesn't it? But "they are not talking about courage" they mean
guts, as in abdomen.
It is a report about "oral therapy" trials. Patients take doses
of myelin daily so that the immune system will learn to recognize myelin
as a food. Food comes from outside the body. It is treated as "food" [obviously]
and not as "enemy" and so the immune system doesn't attack it. The idea
of "oral therapy" is to vaccinate, or inoculate the system so that an out
of order immune system doesn't attack myelin. Results so far (with 17 patients)
look promising and there will be a trial next year with 515 people.
Last month, (6 July 1996, p33-35) there was a story about a neuroscientist
call Eric Kandel. He studies sea snails. He is learning how they learn
and how they remember what they learn..
Now, your brain and my brain are not snail brains. But even snail brains remember. Kandel asks the question: "What is it in their 20,000 nerve cells, that enables even a snail, to have a memory?"
His answer is two proteins, CREB1 and CREB2, and the way that they
balance each other. The team has identified these proteins and something
of the way they work. Now it is Kandel's job to come up with a theory,
or a vision of how memory actually works.
Without some thought, or idea, of how things happen, all the experimental
data in the world is just a mess of data, not an accumulation of knowledge.
[Kevin Craik said (in 1943) that we learn by building models of the brain.]
Too much CREB2, says Kandel, and it mops up the CREB1 and there is a sieve like memory. No CREB2 and everything is remembered and the memories just clog up. Some forgetfulness is a good thing.
These proteins are about long term memory. Those memories depend on short term memory. Memory has to begin somewhere. They already know about this. Serotonin starts the process of short term memory. (p 34) [I'm back to asking my question about the (many and varied) connections between MS and neuro-transmitters like serotonin.]
Disclaimer: The writer of this column has neither medical nor scientific training. I do have enough boldness to use Uni libraries and question the way we think about things.
For next month read the August edition of Nature
Genetics. Everyone is talking about the report I didn't see in the
Canberra Times on Genes and MS that is reported in Nature
(Genetics).
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There were three similar studies in the journal. They were from Canada, UK and the USA. There is definitely a genetic background to MS. (Rex was talking about that at last year's AGM). Where is it? Each study found about 20 possible regions. Only two of the studies identified the same region. All the other regions that were identified were different in the other studies. A Finnish study, using another approach is also described in the issue. MS is a pretty complex condition; and searching genomes [i.e. looking for the genes] is a pretty complex procedure.
The comment by John Bell and Mark Lathrop on p 377 says that the odds against MS having a major genetic determinant have increased. (Considerably, is their word.) There are genetic predispositions, but, ...it's pretty complex. (Have I said that before?) Two regions stood out. On chromosome 6, a region connected with the Human Leukocyte Antigen (HLA) cropped up at different strengths in the three studies. Chromosome 5p turned up a locus in the Canadian study and near there in the UK study. The Finnish team had deliberately looked in that spot and found strong connections.
Each study also found lots of other sites. MS is not as strongly genetically based or as strongly autoimmune as, for example rheumatoid arthritis and type I diabetes. I guess the complexity of MS is indicated by the difficulty in identifying any one mechanism causing MS despite the intensity of research effort over the last twenty years. That supports as wide an approach to therapies as possible. (self-help groups and massage included)
What do we hope to learn from this search for genes? Bell and Lathrop comment: "MS geneticists have now entered the woods. They have many leads to follow but are likely to encounter many disappointments before they emerge with a robust and coherent story." Finding the genes will mean understanding something of the process. A gene will point to the protein that it controls, and that could lead to (a very high tech.) therapy. (see Science Vol. 273, 9 August 1996). (this link is to Science magazine. I think it is the right place) Every step is towards understanding, and that helps us and our medical helpers to make decisions (not very high tech.) that could minimise the negative effects and maximise the positive effects of MS in our lives.
Amazingly, it is hoped to map the human genome by the year 2005. The internet and maths theory developed in linguistics is helping. The scientists are having fun (and working hard), the drug companies are making money, and we still have our lives to lead... Have fun!
Disclaimer: The writer of this column has neither medical nor
scientific training. I do have enough boldness to use Uni libraries and
question the way we think about things.
No homework this month.... I'd better put my name to this one,
Luv; Linda [Anchell]
A different gin:
From children's science papers:...
H2O is hot water and CO2 is cold water;
When you smell an odourless gas, it is probably carbon monoxide;
and
water is composed of two gins, Oxygin and Hydrogin. Oxygin is pure
water and Hydrogin is gin and water! And we deserve a gin!... Cheers!
As gene research gets more important in MS check out what is going
on at:
http://www.phrma.org/genomics/
http://www.phrma.org/genomics/documents/today.html
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It's spring! I'm using the air conditioning in Mum's little car. I've found out (with Betty's help) maybe why.
A team from Adelaide Uni have been doing some work on heating and MS. Many of us say that MS symptoms are worse after a hot shower, or on a hot day. [OK, I know, the Queenslanders, one of them, say the opposite. But mostly we say it's worse in the heat.] There's plenty of anecdotal evidence about that.
We can change the way that we live. Try, somehow, to keep our cool. To understand what is going on though, the scientists need to work hard. And understanding helps us. It helps the medical profession and, maybe could lead to political changes too. [PwMS has been pushing for tax deductions for air conditioners, for example.]
Back to Adelaide. 20 people with MS and 20 people without MS had
their body temperature raised by one degree. (Centigrade) The people with
MS heated faster than the 'controls' and they had reduced sweating, especially
in the lower leg, during heating.
This study was supported by a research grant of $20,000 from the
National Multiple Sclerosis Society. All of the other research projects
carried out with the help of these grants (last year) were about myelin
and autoimmunity. [One was on the break down of the blood-brain barrier;
is that about immunity?] Are MS Societies mesmerised by demyelination and
auto-immunity? [I've asked that question before. Now I'm also hearing it
on the Internet and at public lectures at JCSMR even...]
This work is being done by Drs. Tonkin, Hallpike, Waddy and Faunt in the Department of Clinical and Experimental Pharmacology. It is on "Thermoregulation and autonomic dysfunction in multiple sclerosis." Dr A J McDougall at the University of Sydney is also studying "Autonomic Function in MS." [I wonder if he is working with Professor Jim McLeod who is also interested in the autonomic system and is in Sydney.]
And, well you may ask "what is it that I am talking about? Is it a spelling mistake?" The word is AUTONOMIC.
It comes from the Greek; auto meaning self and nomos meaning law. It's a law unto itself. It keeps your heart pumping, your lungs breathing and your body sweating. It regulates your responses to temperature; your thermoregulation. It makes sure that you go to the toilet, that you sleep and that you wake up. Unless we do yoga, we don't usually try to change these things, they just happen.
There are two parts to the autonomic system, like breathing out, and breathing in, or sleeping and waking; two sides of a coin. one is called the Sympathetic system and the other (parallel to it) is the parasympathetic.
The Sympathetic system is what wakes us up, and especially what operates when a lion comes around the corner. It's your get-up-and-go, and especially, your "fight or flight" responses.
Bladder and bowels and sleep and rest are more under the control of the other part of the autonomic system; called the parasympathetic.
Getting particularly technical, we can say which neurotransmitters are involved with these systems. Adrenaline (yes, it can be a neurotransmitter), Noradrenaline and Serotonin are the important neurotransmitters in the Sympathetic System. [All three might be called something else in different literature. Adrenaline is a copyright (?) word in USA, so it's called epinephrine. Then there's also norepinephrine (noradrenaline). Serotonin is also known as 5HT.
Another way to tackle this is for to be really personal and to talk about my own reaction to a "sympathomimetic" drug. This was a drug which enhanced my own sympathetic system. I knew that some things were not quite right, but as my body changed, I started to "add things up" and as I found out about the sympathetic system these things really made sense.
The drug is an anti-depressant, and its effects are supposed to take some weeks to show themselves. But that is the effects against depression, not the physical effects.
The morning after taking my first dose, I wanted to get up. It was a totally new feeling. Never before had I wanted to get up.
Thirst, hunger, decision making, pupil size, all changed. I was warmer in bed and bladder problems improved. Best of all, when a door slammed, I jumped. My adrenaline is back. I had lost it eight years before. It is very good to have this friend back! I really missed it.
Disclaimer: The writer of this column., [Linda Anchell] has neither medical nor scientific training. I do have enough boldness to use Uni libraries and question the way we think about things.
MS affects us in many different ways. For me a particular medication hit a particular deficiency right on the head (or the nail). But I still think that there is a more general question to ask here. Fatigue and the effects of heat and bladder problems are commonly associated with MS. This is autonomic stuff. Let's say it and ask people like the Adelaide and Sydney groups to keep on keeping on. Who knows where it might lead?
Correspondence will be entered into. Email me at lindafrd AT pcug.org.au (please take out the spaces and change AT to @
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Let me boast a little. This is a comment I received from Chanoch Weil at Haifa Uni. in response to a letter I had written (on the dreaded, addicting internet):
"Thank you for a wonderfully wise message!"
Maybe you won't agree with him, but here is what I had said responding to yet another statement about MS purporting to understand it and give a cure: (Joan had asked some pointed questions of that writer.)
"Thanks for asking these questions Joan. My comment on a cursory reading of James Howard's posting is about the Sandyk and Awerbuch work.
I have a big file of photocopies of stuff from the International Journal of Neuroscience. I was very taken with Reuven Sandyk's comment that demyelination is an epiphenomenon of MS. At the time (1995) I was looking for research about neurotransmitters and MS, knowing that mine were somewhat out of order. Maybe, just maybe, I thought something goes wrong in the chemical area before the demyelination and all the symptoms that then come with that.
One of our support workers at the time was doing a neuroscience project on melatonin, so with Gail's help I found Sandyk.
Then, a local neuroscience researcher got interested and looked for more of this neurologist's work. There is lots. Too much(?) and it is published in a journal of which he is the neuroscience editor. This is not good.
I think that the mavericks may be showing us something. I think that we need them as well as the painstaking work which does go on in our Universities. But, we need to keep asking questions and know the difference. (As well as knowing about the profit motive of drug companies etc. etc.)
PS I just read the history of MS file again. On this issue of mavericks, did you know that sweat suppression was thought to cause MS in the 1890's? OK, it isn't a cause, but it is often a symptom, if the sympathetic system is hit.
Cause and effect, chicken and egg. The questions need to be in the right order. By the way, I'm a PwMS, not a doctor, scientist or neurologist. I've got a geography degree and recently a theology degree. So I'm used to reading stuff that I don't understand. again and again until I do understand it (in part). And in 1995 I did lots of that.
Asking the right questions is more important than knowing all the answers!
luv, Linda
(and is next month history? Psychoneuroimmunology [I dare you to say
that ten times fast] or Asprin as a Neuroprotective? Lots of big words
coming up!)
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And I should add an extra bit on the sweat suppression
and the sympathetic system from May 1999. There is a condition known
as hyperhydrosis where people have excessive sweating from hands and scalp
and other odd parts of the body. A New Zealand surgeon, Murray McCormick
is treating it by key hole surgery doing sympathectomies. These slit the
sympathetic nerves on either side of the backbone.
Mr McCormick is clinical director of surgery at
Auckland Hospital and was addressing the annual Scientific Congress of
the Royal Australasian College of Surgeons in Auckland.
(reported in The Canberra Times, Saturday, May 15, 1999 page 8)
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© Linda Anchell 1999
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The site was first published in 1999, but it is being revamped in July 2004
This web site is designed and maintained by Linda Anchell. Write to:lindafrd@pcug.org.au