Saturday, December 17, 2011

Exercise with neurological conditions

 
"Listen to your body and learn how it reacts to changes in your routine and lifestyle"
 
"it is best to learn relaxation and energy conservation to avoid flare-ups." Keep a record of the exercises you do and how your body responds to them."
 
"The society recommends yoga and tai chi as two forms of physical activity that focus on stretching, breathing, and relaxation.

"If you have access to a swimming pool through your community, YMCA, or health club, consider water-based exercises, such as water aerobics classes. Water removes the pressure of gravity and supports your body while providing a little bit of strengthening resistance. Immersion in water can also be very good for the circulatory system.

"And remember: The most important step of all is the very first one. Just get started, and you can modify your routine from there."

Vitamin D for flu

 6.  Vitamin D is better than any vaccine says Doctor

Germans found that Vitamin D increases the immune system by 3-5 times and is better than any vaccine at helping the immune system beat the h5n1 (bird flu) virus. Watch the video. The Canadian is a socially progressive and not-for-profit national newspaper, with an international readership. We provide an alternative to the for-profit commercial focused media, which often censors vital information and perspective of potential interest to the diverse Canadian public, and other peoples internationally.
The Canadian
Related Links:
*
New Report - Vitamin D Better Than Vaccines At Preventing Flu
Oliver Gillie, The Times
* * *
Dr. Oz the other day also recommended Vitamin D during flu season, at twice the RDA.
 

Friday, December 16, 2011

An offer that we hope inspires more such offers

PERMISSION TO FORWARD AND RE-POST ON OTHER FORUMS, SOCIAL NETWORKING
SITES AND USE IN NEWSLETTERS. PLEASE TWEET AND RE-TWEET ON TWITTER.

Whitehaven News Letters.

Following the publication of a letter about M.E. in the Whitehaven News
(8 December 2011), we have received a very kind offer of help, from a
reader, Joyce, to visit or shop for an M.E sufferer in the locality.
Since Joyce is herself an MCS (multiple chemical sensitivity) sufferer,
who remains well as long as she does not come into contact with
synthetic fragrances and especially VOCs (volatile organic compounds)
emitted from clothes treated by perfumed laundry products, she can only
be of assistance if the M.E. sufferer lives in a chemically free home,
Please contact drjohngreensmith@mecommunitytrust.org and we shall be
happy to introduce you.

We are publishing this internationally, especially in the M.E. Community
support groups, with permission to forward and re post, in order that
this good example may be followed to help reduce the social isolation
faced by so many people with this dreadfully disabling illness.

Best wishes
drjohngreensmith@mecommunitytrust. org
Dr John H Greensmith
ME Community Trust. org

Thursday, December 15, 2011

Gray Area: Thinking With a Damaged Brain by Floyd Skloot

Floyd Skloot writes about the 1988 onset of CFS in this essay, "Gray Area,"
reprinted in LOST magazine from his collection, "In the Shadow of Memory."
LOST will soon cease publication but is paying tribute to the 10 most
accessed pieces, including our friend Floyd's.
_http://www.lostmag.com/issue42/grayarea.php_ (http://www.lostmag.com/issue42/grayarea.php)


Gray Area: Thinking With a Damaged Brain
My entire brain, the organ by which my very consciousness is controlled,
was reorganized one day ten years ago. I went to sleep here and woke up
there; the place looked the same but nothing in it worked the way it used to

by Floyd Skloot

I used to be able to think. My brain's circuits were all connected and I
had spark, a quickness of mind that let me function well in the world. There
were no problems with numbers or abstract reasoning; I could find the right
word, could hold a thought in mind, match faces with names, converse
coherently in crowded hallways, learn new tasks. I had a memory and an intuition
that I could trust.

All that changed on December 7, 1988, when I contracted a virus that
targeted my brain. A decade later, my cane and odd gait are the most visible
evidence of damage. But most of the damage is hidden. My cerebral cortex, the
gray matter that M.I.T. neuroscientist Steven Pinker likens to "a large
sheet of two-dimensional tissue that has been wadded up to fit inside the
spherical skull," has been riddled with tiny perforations. This sheet and the
thinking it governs are now porous. Invisible to the naked eye, but readily
seen through brain imaging technology, are areas of scar tissue that
constrict blood flow. Anatomic holes, the lesions in my gray matter, appear as a
scatter of white spots like bubbles or a ghostly pattern of potshots. Their
effect is dramatic; I am like the brain-damaged patient described by
neuroscientist V.S. Ramachandran in his book Phantoms in the Brain: "parts of
her had forever vanished, lost in patches of permanently atrophied brain
tissue." More hidden still are lesions in my Self, fissures in the thought
process that result from this damage to my brain. When the brain changes, the
mind changes — these lesions have altered who I am.

"When a disease process hits the brain," writes Dartmouth psychiatry
professor Michael Gazzaniga in Mind Matters, "the loss of nerve cells is easy to
detect." Neurologists have a host of clinical tests that let them observe
what a brain-damaged patient can and cannot do. They stroke his sole to test
for a spinal reflex known as Babinski's sign or have a him stand with feet
together and eyes closed to see if the ability to maintain posture is
compromised. They ask him to repeat a set of seven random digits forward and
four in reverse order, to spell "world" backwards, to remember three specific
words such as "barn" and "handsome" and "job" after a spell of unrelated
conversation. A new laboratory technique, positron emission tomography, uses
radioactively labeled oxygen or glucose that essentially lights up
specific and different areas of the brain being used when a person speaks words or
sees words or hears words, revealing the organic location for areas of
behavioral malfunction. Another new technique, functional magnetic resonance
imaging, allows increases in brain blood flow generated by certain actions
to be measured. The resulting computer-generated pictures, eerily colorful
relief maps of the brain's lunar topology, pinpoint hidden damage zones.

But I do not need a sophisticated and expensive high-tech test to know what
my damaged brain looks like. People living with such injuries know
intimately that things are awry. They see it in activities of daily living, in the
way simple tasks become unmanageable. This morning, preparing oatmeal for
my wife Beverly, I carefully measured out one-third cup of oats and poured
them onto the pan's lid rather than into the bowl. In its absence, a
reliably functioning brain is something I can almost feel viscerally. The zip of
connection, the shock of axon-to-axon information flow across a synapse, is
not simply a textbook affair for me. Sometimes I see my brain as a scalded
pudding, with fluky dark spots here and there through its dense layers and
small scoops missing. Sometimes I see it as an eviscerated old TV console,
wires all disconnected and misconnected, tubes blown, dust in the crevices.

Some of this personal, low-tech evidence is apparent in basic functions
like walking, which for me requires intense concentration, as does maintaining
balance and even breathing if I am tired. It is apparent in activities
requiring the processing of certain fundamental information. For example, no
matter how many times I have been shown how to do it, I cannot assemble our
vacuum cleaner or our poultry shears or the attachments for our
hand-cranked pasta maker. At my writing desk, I finish a note and place the pen in my
half-full mug of tea rather than in its holder, which quite obviously teems
with other pens. I struggle to figure out how a pillow goes into a
pillowcase. I cannot properly adjust Beverly's stereo receiver in order to listen
to the radio; it has been and remains useful to me only in its present
setting as a CD player. These are all public, easily discernible malfunctions.

However, it is in the utterly private sphere that I most acutely experience
how changed I am. Ramachandran compares this to harboring a zombie,
playing host to a completely nonconscious being somewhere inside yourself. For
me, being brain damaged also has a physical, conscious component. Alone with
my ideas and dreams and feelings, turned inward by the isolation and
timelessness of chronic illness, I face a kind of ongoing mental vertigo in which
thoughts teeter and topple into those fissures of cognition I mentioned
earlier. I lose my way. I spend a lot of time staring into space, probably
with my jaw drooping, as my concentration fragments and my focus dissolves.
Thought itself has become a gray area, a matter of blurred edges and lost
distinctions, with little that is sharp about it. This is not the way I used
to be.

In their fascinating study, Brain Repair, an international trio of
neuroscientists — Donald G. Stein from America, Simon Brailowsky from Mexico, and
Bruno Will from France — report that after injury "both cortical and
subcortical structures undergo dramatic changes in the pattern of blood flow and
neural activity, even those structures that do not appear to be directly
or primarily connected with the zone of injury." From this observation, they
conclude that "the entire brain — not just the region around the area of
damage — reorganizes in response to brain injury." The implications of this
are staggering; my entire brain, the organ by which my very consciousness is
controlled, was reorganized one day ten years ago. I went to sleep here
and woke up there; the place looked the same but nothing in it worked the
way it used to.

If Descartes was correct, and to Think is to Be, then what happens when I
cannot think, or at least cannot think as I did, cannot think well enough to
function in a job or in the world? Who am I?

You should hear me talk. I often come to a complete stop in mid-sentence,
unable to find a word I need, and this silence is an apt reflection of the
impulse blockage occurring in my brain. Sitting next to Beverly as she
drives our pickup truck through Portland traffic at 6:00 p.m., I say "We should
have gone for pizza to avoid this blood … " and cannot not go on. I hear
myself; I know I was about to say "blood tower traffic" instead of "rush hour
traffic." Or I manifest staggered speech patterns — which feels like
speaking with a limp — as I attempt to locate an elusive word. "I went to the …
hospital yesterday for some … tests because my head … hurt." Or I blunder
on, consumed by a feeling that something is going wrong, as when I put
fresh grounds into the empty carafe instead of the filter basket on my coffee
maker, put eye drops in my nose, or spray the cleaning mist into my face
instead of onto the shower walls. So at the dinner table I might say "Pass
the sawdust" instead of "pass the rice," knowing even as it happens that I am
saying something inappropriate. I might start a conversation about
"Winston Salem's new CD" instead of Wynton Marsalis's or announce that "the shore
is breaking" when I mean to say "the shower is leaking." There is nothing
smooth or unified any more about the process by which I communicate; it is
dis-integrated and unpredictably awkward. My brain has suddenly become like
an old man's. Neurologist David Goldblatt has developed a table that
correlates cognitive decline in age-associated memory impairment and traumatic
brain injury, and the parallels are remarkable. Not gradually, the way such
changes occur naturally, but overnight, I was geezered.

It is not just about words. I am also "dyscalculic," struggling with the
math required to halve a recipe or to figure out how many more pages are left
in a book I'm reading. If we are on E. 82nd and Third in Manhattan,
staying with my childhood friend Larry Salander for the week, it is very
difficult for me to compute how far away The Gotham Book Mart is over on W. 47th
between Fifth and Sixth, though I spent much of my childhood in the city.

Because it is a place where I still try to operate normally, the kitchen is
an ideal neurological observatory. After putting the leftover chicken in a
plastic bag, I stick it back in the oven instead of the refrigerator. I
put the freshly cleaned pan in the refrigerator, which is how I figure out
that I must have put the chicken someplace else because it's missing. I pick
up a chef's knife by its blade. I cut off an eighth of a giant white onion
and then try to stuff the remainder into a recycled 16-ounce yogurt
container that might just hold the small portion I set aside. I assemble
ingredients for a vinaigrette dressing, pouring the oil into an old olive jar,
adding balsamic vinegar, mustard, a touch of fresh lemon juice, and spices. Then
I screw the lid on upside-down and shake vigorously, spewing the contents
everywhere. I stack the newspaper in the wood stove for recycling. I walk
the garbage up our 200-yard long driveway and try to put it in the mailbox
instead of the trash container.

At home is one thing; when I perform these gaffes in public, the effect is
often humiliating. I can be a spectacle. In a music store last fall, I was
seeking an instruction book for Beverly, who wanted to relearn how to play
her old recorder. She informed me that there were several kinds of
recorders; it was important to buy exactly the right category of book since
instructions for a soprano recorder would do her no good while learning on an
alto. I made my way up to the counter and nodded when the saleswoman asked what
I wanted. Nothing came out of my mouth, but I did manage to gesture over
my right shoulder like an umpire signaling an out. I knew I was in trouble,
but forged ahead anyway, saying "Where are the books for sombrero
reporters?" Last summer in Manhattan, I routinely exited the subway stations and
led Beverly in the wrong direction, no matter which way we intended to go.
She kept saying things like "I think west is that way, sweetie," while I
confidently and mistakenly headed east, into the glare of the morning sun, or
"Isn't that the river?" as I led her away from our riverside destination.
Recently, in downtown Portland on a warm November morning, I stopped at the
corner of 10th and Burnside, one of the busiest crossings in the city,
carefully checked the traffic light (red) and the traffic lanes (bus coming),
and started to walk into the street. A muttering transient standing beside me
on his way to Powell's Books, where he was going to trade in his overnight
haul of tomes for cash, grabbed my shoulder just in time.

At home or not at home, it ultimately makes no difference. The sensation of
"dysfunctional mentation" is like being caught in a spiral of lostness.
Outside the house, I operate with sporadic success, often not knowing where I
am or where I'm going or what I'm doing. Inside the house, the same
feelings often apply and I find myself standing on the top of the staircase
wondering why I am going down. Even inside my head there is a feeling of being
lost, thoughts that go nowhere, emptiness where I expect to find words or
ideas, dreams I never remember.

Back in the fall, when it was Beverly's birthday, at least I did remember
to go to the music store. More often, I forget what I am after within
seconds of beginning the search. As she gets dressed for work, Beverly will tell
me what she wants packed for lunch and I will forget her menu by the time I
get up the 14 stairs. Now I write her order down like a waiter. Sometimes
I think I should carry a pen and paper at all times. In the midst of
preparing a salad, I stop to walk the four paces over to the little desk where we
keep our shopping list and forget "tomatoes" by the time I get there. So I
should also have paper handy everywhere. Between looking up a phone number
and dialing it, I forget the sequence. I need the whole phone book on my
speed dial system.

Though they appear without warning, these snafus are no longer strange to
me. I know where they come from. As Dr. Richard M. Restak notes in The
Modular Brain, "a common error frequently resulting from brain damage involves
producing a semantically related word instead of the correct response." But
these paraphasias and neologisms, my "expressive aphasias," and my
dyscalculas and my failures to process — the rapids of confusion through which I
feel myself flailing — though common for me and others with brain damage, are
more than Symptoms to me. They are also more than what neurologists like
to call "Deficits," the word of choice when describing impairment or
incapacity of neurological function, as Oliver Sacks explains in his introduction
to The Man Who Mistook His Wife for a Hat. These "deficits" have been
incorporated into my very being, my consciousness. They are now part of my
repertoire. Deficits imply losses; I have to know how to see them as gains.

*

Practitioners of neuroscience call the damage caused by trauma, stroke, or
disease an "insult to the brain." So pervasive is this language that the
states of Georgia, Kentucky, Minnesota and others incorporate the phrase
"insult to the brain" in their statutory definitions of traumatic brain injury
for disability determinations. Such insults, according to the Brain Injury
Association of Utah, "may produce a diminished or altered state of
consciousness, which results in an impairment of cognitive abilities or physical
functioning." The death of one Miles Dethmuffen, frontman and founding member
of the Boston rock band Dethmuffen, was attributed in news reports to "an
alcoholic insult to the brain." The language used is so cool. There is this
sentence from the website NeuroAdvance.com: "When there is an insult to
the brain, some of the cells die." Yes.

Insult is an exquisitely zany word for the catastrophic neurological event
it is meant to describe. In current usage, of course, "insult" generally
refers to an offensive remark or action, an affront, a violation of mannerly
conduct. To insult is to treat with gross insensitivity, insolence, or
contemptuous rudeness. The medical meaning, however, as with so many other
medical words and phrases, is different, older, linked to a sense of the word
that is some two or three centuries out of date. "Insult" comes from the
Latin compound verb insultare, which means "to jump on" and is also the root
word for "assault" and "assail." It's a word that connotes aggressive
physical abuse, an attack. Originally, it suggested leaping upon the prostrate
body of a foe, which may be how its link to contemptuous action was forged.

Though "an insult to the brain" (a blow to the head, a metal shard through
the skull, a stroke, a viral "attack") is a kind of assault, I am curious
about the way contempt has found its way into the matter. Contempt was
always part of the meaning of "insult" and now it is primary to the meaning.
Certainly a virus is not acting contemptuously when it targets the brain;
neither is the pavement nor steering wheel nor falling wrench nor clot of blood
nor most other agents of "insult." But I think society at large, medical
scientists, insurers, legislators, and the person-on-the-street do feel a
kind of contempt for the brain damaged with their comical way of walking,
their odd patterns of speech or ways in which neurological damage is
expressed, their apparent stupidity, their abnormality. The damage done to a brain
seems to evoke disdain in those who observe it and shame or disgrace in
those who experience it — I know I refer to a feeling of humiliation when I
expose my neurologically induced aberrant behaviors in public.

Poet Peter Davison has noticed the resonant irony of the phrase "an insult
to the brain" and made use of it in his poem, "The Obituary Writer."
Thinking about the suicide of John Berryman, the heavily-addicted poet whose
long-expected death in 1972 followed years of public behavior symptomatic of
brain damage, Davison writes that "his hullabaloos/of falling-down
drunkenness were an insult to the brain." In this poem, toying with the meaning of
the phrase, Davison suggests that Berryman's drinking may have been an insult
to his brain, technically speaking, but that watching him was, for a
friend, another kind of brain insult. He has grasped the fatuousness of the
phrase as a medical term, its inherent judgment of contempt, and made use of it
for its poetic ambiguity.

But I have become enamored of the idea that my brain has been insulted by a
virus. I used it as motivation. There is a long tradition of avenging
insults through duels or counter-insults, through litigation, through the
public humiliation of the original insult. So I write. I avenge myself on an
insult that was meant, it feels, to silence me by compromising my word-finding
capacity, my ability to concentrate and remember, to spell or
conceptualize, to express myself, to think.

The duel is fought over and over. I have developed certain habits that
enable me to work — a team of seconds, to elaborate this metaphor of a duel. I
must be willing to write slowly, to skip or leave blank spaces where I
cannot find words that I seek, compose in fragments and without an overall
ordering principle or imposed form. I explore and make discoveries in my
writing now, never quite sure where I am going but willing to let things ride and
discover later how they all fit together. Every time I finish an essay or
poem or piece of fiction, it feels as though I have faced down the insult.

*

In his book Creating Mind, Harvard neurobiologist John E. Dowling says "the
cerebral cortex of the human brain, the seat of higher neural function —
perception, memory, language, and intelligence — is far more developed than
is the cerebral cortex of any other vertebrate." Our gray matter is what
makes us human. Dowling goes on to say that "because of the added neural
cells and cortical development in the human brain, new facets of mind emerge."
Like the fractured facet of a gemstone or crystal, like a crack in the
facet of a bone, a chipped facet of mind corrupts the whole, and this is what
an insult to the brain does.

Though people long believed, with Aristotle, that the mind was located
within the heart, the link between brain and mind is by now a basic fact of
cognitive science. Like countless others, I am living proof of it. Indeed, it
is by studying the behavior of brain-damaged patients like me that medical
science first learned, for example, that the brain is modular, with
specific areas responsible for specific functions, or that functions on one side
of the body are controlled by areas on the opposite side of the brain. "The
odd behavior of these patients," says V.S. Ramachandran, speaking of the
brain-damaged, "can help us solve the mystery of how various parts of the
brain create a useful representation of the external world and generate the
illusion of 'self' that endures in space and time." Unfortunately, there is
ample opportunity for observation since, according to the Brain Injury
Association, more than two million Americans suffer traumatic brain injury every
year, a total that does not include damage by disease.

"Change the brain, change the person," says Richard Restak in The Modular
Brain. But how, exactly? No one has yet explained the way a brain produces
what we think of as consciousness. How does the firing of electrical impulse
across a synapse produce love, math, nightmare, theology, appetite? Stated
more traditionally, how do brain and mind interact? Bookstore shelves are
now filled with books, like Steven Pinker's brilliant 1997 study How the
Mind Works, which attempt to explain how a three and a half pound organ that
is the consistency of Jell-O makes us see, think, feel, choose, and act.
"The mind is not the brain," Pinker says, "but what the brain does."

And what the brain does, according to Pinker, "is information processing,
or computation." We think we think with our brain. But in doing its job of
creating consciousness, the brain actually relies upon a vast network of
systems and is connected to everything — eyes, ears, skin, limbs, nerves. As
Dowling so dourly puts it, our mental function, our mind — memory, feelings,
emotions, awareness, understanding, creativity — "is an emergent property
of brain function." In other words, "what we refer to as mind is a natural
consequence of complex and higher neural processing."

The key word is "processing." We actually think with our whole body. The
brain, however, takes what is shipped to it, crunches the data, and sends
back instructions. It converts, it generates results. Or, when damaged, does
not. There is nothing wrong with my sensory receptors, for instance. I see
quite well. I can hear and smell, my speech mechanisms (tongue, lips,
nerves) are intact. My skin remains sensitive. But it's in putting things
together that I fail. Messages get garbled, blocked, missed. There is, it
sometimes seems, a lot of static when I try to think, and this is the gray area
where nothing is clear any longer.

Neurons, the brain's nerve cells, are designed to process information. They
"receive, integrate and transmit," as Dowling says, receiving input from
dendrites and transmitting output along axons, sending messages to one
another across chemical passages called synapses. When there are lesions like
the ones that riddle my gray matter, processing is compromised. Not only
that: certain cells have simply died and with them the receiving, integrating,
and transmitting functions they performed.

My mind does not make connections because, in essence, some of my brain's
connectors have been broken or frayed. I simply have less to work with and
it is no surprise that my IQ dropped measurably in the aftermath of my
illness. Failing to make connections, on both the physical and metaphysical
levels, is distressing. It is very difficult for me to "free-associate;" my
stream of consciousness does not absorb runoff or feeder streams well, but
rushes headlong instead. Mental activity that should follow a distinct pattern
does not, and, indeed, I experience my thought process as subject to
random misfirings. I do not feel in control of my intelligence. Saying "pass me
the tracks" when I intended to say "pass me the gravy" is a nifty example.
Was it because gravy sounds like grooves which led to tracks, or because my
tendency to spill gravy leaves tracks on my clothes? A misfire, a glitch
in the gray area that thought has become for me, and as a result my ability
to express myself is compromised. My very nature seems to have altered.

I am also easily overloaded. I cannot read the menu or converse in a
crowded, noisy restaurant. I get exhausted at Portland Trailblazers basketball
games, with all the visual and aural imagery, all the manufactured commotion,
so I stopped going nine years ago. My hands are scarred from burns and
cuts that occurred when I tried to cook and converse at the same time. I
cannot drive in traffic, especially in our standard transmission pickup truck. I
cannot talk about, say, the fiction of Thomas Hardy while I drive; I need
to be given directions in small doses rather than all at once, and need
those directions to be given precisely at the time I must make the required
turn. This is, as Richard Restak explains, because driving and talking about
Hardy, or driving and processing information about where to turn, are
handled by different parts of the brain and my brain's parts have trouble
working together.

I used to write accompanied by soft jazz, but now the least pattern of
noises distracts me and shatters concentration. My entire writing process, in
fact, has been transformed as I learned to work with my newly configured
brain and its strange snags. I have become an avid note taker, a jotter of
random thoughts that might or might not find their way together or amount to
anything, a writer of bursts instead of steady work. A slight interruption —
the movement of my cat across my window view, the call of a hawk, a spell
of coughing — will not just make me lose my train of thought, it will leave
me at the station for the rest of the day.

I have just finished reading a new book about Muhammad Ali, King of the
World, written by David Remnick. I anticipated identifying a bit with Ali, now
suffering from Parkinson's Disease, who shows so strikingly what brain
damage can do, stripped as he is of so many of the functions — speech,
movement, spontaneity — that once characterized him. But it was reading about
Floyd Patterson that got me.

Patterson was a childhood hero of mine. Not only did we share a rare first
name, we lived in neighboring towns — he was in Rockville Center, on Long
Island, while I was five minutes away in Long Beach, just across the bridge.
I was nine when he beat Archie Moore to take the heavyweight championship
belt, almost 12 when he lost it to Ingemar Johannson, and almost 13 when he
so memorably won it back. The image of Johannson's left leg quivering as
he lay unconscious on the mat is one of those vivid memories that endures
(because, apparently, it is stored in a different part of the brain than
other, less momentous memories). Floyd, like me, was small of stature in his
world, was shy and vulnerable, and I was powerfully drawn to him.

During his 64 professional fights, his long amateur career, his many rounds
of sparring to prepare for fights, Patterson absorbed a tremendous amount
of damage to his brain. Now in his sixties, his ability to think is
devastated. Testifying in court earlier this year in his capacity as head of the
New York State Athletic Commission, Patterson "generally seemed lost." He
could not remember the names of his fellow commissioners, his phone number or
secretary's name or lawyer's name. He could not remember the year of his
greatest fight, against Archie Moore, or "the most basic rules of boxing
(the size of the ring, the number of rounds in a championship fight)." He kept
responding to questions by saying "it's hard to think when I'm tired."

Finally, admitting "I'm lost," he said "sometimes I can't even remember my
wife's name, and I've been married 32, 33 years." He added again that it
was hard for him to think when he was tired. "Sometimes, I can't even
remember my own name."

*

People often ask if I will ever "get better." In part, I think what they
wonder about is whether the brain can heal itself. Will I be able, either
suddenly or gradually, to think as I once did? Will I toss aside the cane, be
free of symptoms, have all the functions governed by my brain restored to
smooth service, rejoin the world of work and long-distance running? The
question tends to catch me by surprise because I believe I have stopped asking
it myself.

The conventional wisdom has long been that brains do not repair themselves.
Other body tissue, other kinds of cells, are replaced after damage, but
"when brain cells are lost because of injury or disease," John Dowling wrote
as recently as 1998, "they are not replaced." We have, he says, as many
brain cells at age one as we will ever have. This has been a fundamental tenet
of neuroscience, yet it has also long been clear that people do recover —
fully or in part — from brain injury. Some stroke victims relearn to walk
and talk, feeling returns in once-numbed limbs. Children, especially
children, recover and show no lasting ill effects from catastrophic injuries or
coma-inducing bouts of meningitis.

So brain cells do not get replaced or repaired, but brain-damaged people
occasionally do regain function. In a sense, then, the brain heals, but its
cells do not.

In Confronting Traumatic Brain Injury, Texas bioethicist William J.
Winslade says "Scientists still don't understand how the brain heals itself." He
adds that although "until recently, neuroscientists thought that much of the
loss of capabilities due to brain damage was irreversible," patients
recover spontaneously and rehabilitation programs "can restore cognitive and
functional skills and emotional and experiential capacity, at least in part."

There are in general five theories about the way people might recover
function lost to brain damage. One suggests that we do not need all our brain
because we only use a small part of it to function. Another is that some
brain tissue can be made to take over functions lost to damage elsewhere.
Connected is the idea that the brain has a backup mechanism in place allowing
cells to take over like understudies. Rehabilitation can teach people new
ways to perform some old tasks, bypassing the whole damaged area altogether.
And finally, there is the theory that in time, and after the chemical shock
of the original injury, things return to normal and we just get better.

It is probably true that, for me, a few of these healing phenomena have
taken place. I have, for instance, gotten more adept at tying my shoes, taking
a shower, driving for short periods. With careful preparation, I can
appear in public to read from my work or attend a party. I have developed
techniques to slow my interactions with people down or to incorporate my mistakes
into a longer-term process of communications or composition. I may not be
very good in spontaneous situations, but given time to craft my responses I
can sometimes do well. But I still can't think.

A recent development promises to up the ante in the game of recovery from
brain damage. The New York Times reported in October of 1998 that "adult
humans can generate new brain cells." A team at the Salk Institute for
Biological Studies in La Jolla, California, observed new growth in cells of the
hippocampus, which controls learning and memory in the brain. The team's
leader. Dr. Fred Gage, expressed the usual cautions; more time is needed to
"learn whether new cell creation can be put to work" and under what
conditions. But the findings were deemed both "interesting" and "important."

There is only one sensible response to news like this. It has no personal
meaning to me. Clinical use of the finding lies so far in the future as to
be useless, even if regenerating cells could restore my lost functions. Best
not to think about this sort of thing.

Because, in fact, the question of whether I will ever get better is
meaningless. To continue looking outside for a cure, a "magic bullet," some
combination of therapies and treatments and chemicals to restore what I have
lost is to miss the point altogether. Certainly if a safe, effective way
existed to resurrect dead cells, or generate replacements, and if this somehow
guaranteed that I would flash back or flash forward to "be the person I was,"
it would be tempting to try.

But how would that be? Would the memories that have vanished reappear? Not
likely. Would I be like the man, blind for decades, who had sight restored
and could not handle the experience of vision, could not make sense of a
world he could see? I am, in fact, who I am now. I have changed. I have
learned to live and live richly as I am now. Slowed down, softer, more heedful
of all that I see and hear and feel, more removed from the hubbub, more
internal. I have made certain decisions, such as moving from the city to a
remote rural hilltop in the middle of acres of forest, that have turned out to
be good for my health and even my soul. I have gained the love of a woman
who knew me before I got sick and likes me much better now. Certainly I want
to be well. I miss being able to think clearly and sharply, to function in
the world, to move with grace. I miss the feeling of coherence or
integrity that comes with a functional brain. I feel old before my time.

In many important respects, then, I have already gotten better. I continue
to learn new ways of living with a damaged brain. I continue to make
progress, to avenge the insult, to see my way around the gray area. But no, I am
not going to be the man I was. In this, I am hardly alone.


Reprinted from In the Shadow of Memory (University of Nebraska Press, 2003)

Original art courtesy Rob Grom.

This article originally appeared in Issue 3, February 2006.

A Conversation with Dr. Ian Lipkin | Chronic Fatigue Syndrome

 

"Drs. Judy Mikovits and Frank Ruscetti continue to be part of the Lipkin study.

... He instead has worked with Mikovits and Ruscetti to find a lab where they would be `comfortable' working, he said. That lab has been found and their work has resumed, he said."

 

* * *

Best Christmas gift?  :)

 

 

Wednesday, December 14, 2011

10 Things NOT to Say to a Person with Migraines

CFS - ME Conundrum


PERMISSION TO FORWARD AND RE-POST ON OTHER FORUMS, SOCIAL NETWORKING
SITES AND USE IN NEWSLETTERS. PLEASE TWEET AND RE-TWEET ON TWITTER.


It is often said that the illness M.E. (Myalgic Encephalomyelitis) is
"also known as" Chronic Fatigue Syndrome" (CFS). Further, that CFS is
preferred by doctors, while patients would rather have M.E, because they
believe it implies a more serious illness, though this is not borne out
by the number of patients who do use CFS.

The terms are commonly written as the hybrid CFS/ME and, in this order
rather than ME/CFS. This produces a conundrum, which is worth trying to
unravel, in order to see why there has been so little progress in
understanding M.E. If CFS and M.E. are identical, synonymous and
interchangeable and CFS is preferred, why not drop M.E. altogether,
since nothing would be lost? "M.E." never passes the lips of some
influential doctors and researchers, such as Dr Esther Crawley and
Professor Simon Wessely; even when asked about M.E., they reply with
CFS. One theory is that, if ever an indisputable diagnostic test were
discovered for M.E., they would have to admit to having backed the wrong
horse.

As long as M.E. is retained, either independently or as part of CFS/ME,
there is a separate identity, or perhaps identities, if either or both
are plural terms. If CFS is a plural term and M.E. is one of its
syndromes, which are the others? I have never heard of another condition
being obliquely attached to CFS/. Again, if CFS is plural and CFS and
M.E. are the same, then M.E. must also be plural but, if it is, I have
not heard of any subsets - not degrees of severity, subsets - said to be
subsumed under M.E. unless one reverses the terms to ME/CFS - but then
are we not faced with the same dilemmas as with CFS/ME? So, of the
choices of definitions and singularity or plurality, which do
researchers and representatives choose? We can find evidence of all of
them: CFS/ME ("the chronic fatigue syndrome - ME" - Sussex&   Kent ME/CFS
Society); CFS, singular, ("This illness ..." Dr Esther Crawley "cost of
CFS to UK economy" study and elsewhere); synonymous, ('When we use the
words, CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome), what we
mean is Myalgic Encephalomyelitis (ME).", Gail Kansky, National CFIDS
Foundation) and any (An earlier version on Phil Parker's website that
they called all illnesses such as CFS, PVFS and Fibromyalgia the same
name M.E. has now been amended to that they get similar results when
given the Lightning Process, whatever they are called).

In the absence of an agreed diagnostic test, such as a blood test or
scan, there are different diagnostic criteria that have been suggested,
including Fukuda, Oxford, London, Canadian Consensus, Nightingale and
NICE Guidelines. To compound the problems of experimental design
further, all of these have been used in different studies, sometimes
more than one in the same study, making comparisons impossible.

With such lack of experimental controls, including bias in the subjects
sampled as severely affected people cannot travel to take part, the
statistics are bound to be distorted, since there are likely to be many
more with CFS than M.E.; conclusions deduced from CFS, cannot be applied
to people with M.E., since there may have been few, if any, in the
sample studied and recommendations for treatment, which may be
beneficial to some with CFS, may be ineffective or even harmful for M.E.
sufferers.

This Research Psychologist, diagnosed with Myalgic Encephalomyelitis in
1988, believes that it is possible to identify a more "pure" group of
M.E. sufferers, without the variables "fatigue" - which even its
advocates admit is "heterogeneous", "ubiquitous" and "nebulous" - and
its bookends "chronic" and "syndrome". Until these contaminating
variables are eliminated we shall make no progress with a discrete
illness which has a physiological cause and underlying disease process
that continues to devastate the lives of millions of people worldwide.

Yours sincerely
John
M.E. Community Trust. org
* * *
My initial diagnosis was "Post Viral Syndrome", and a few months later CDC required that set of symptoms to be called CFS.  I've never had the ME diagnosis, and unless I see a new doctor, I never will, even though it's obvious that what I have is ME and not merely some vague fatiguing condition.

Tuesday, December 13, 2011

Death probe for Multiple Sclerosis pill

Death probe for Multiple Sclerosis pill

One year after Novartis won FDA approval for a new type of drug to treat relapsing forms of multiple sclerosis and delay the progression of physical disabilities, the drugmaker is now investigating a death tied to its pill, which is called Gilenya. The disclosure, which was made by a Wall Street analyst, has the potential to cast a pall over a drug that has been expected to generate blockbuster sales. Specifically, this is the first death of a patient within 24 hours of taking a first dose.
Ed Silverman, Pharmalot
* * *
An example of anti-prescription hysteria.  No matter what it is -- even natural substances like peanuts -- there will be someone out there who is so severely allergic that ingesting it even once will be enough to kill them.  Those of us who would derive benefit from something should not be deprived access to medication because a small number of people had an allergic reaction.
 
I will note that a very dear friend of mine died of an allergy to aspirin.  I have heard no demands that aspirin be pulled from the market because of people like her.
 

The problem with "CFS" research....

PERMISSION TO FORWARD AND RE-POST ON OTHER FORUMS, SOCIAL NETWORKING
SITES AND USE IN NEWSLETTERS. PLEASE RE-TWEET ON TWITTER.

The continued assertion of a relatively small but very influential
school of researchers, practitioners and government advisers, including
Dr Esther Crawley (BBC Radio 4, "Today" programme, 13 December 2011)
that M.E. (Myalgic Encephalomyelitis) and CFS (Chronic Fatigue Syndrome)
are the same is impeding progress not only for M.E. sufferers but
patients with all other conditions bundled within this indiscriminate
diagnostic term, which was created in, and has muddied the waters since
1988 (Holmes et al.). Researchers should be continually refining the
sample they are studying and eliminating contaminating variables. In
this field, they have been driving in the opposite direction.

An analogy may help those not so familiar with experimental design and
terminology: Champagne is a sparkling wine that comes ONLY from that
region of France. If you were a wine expert, whether grower, taster, or
enthusiastic amateur, you may genuinely contest whether the Champagne
drink is the best, defined by taste, cost or some other criteria.
Indeed, Champagne aficionados may concede that yours is both a better
drink and value for money but, by definition, it is NOT Champagne
(unless you start moving the goalposts). If you now decide to call it
Bubbly/Champagne, you can include other bubbly or fizzy drinks, perhaps
some that are non alcoholic, which takes us further away from true
Champagne, e.g. Champagne/Cava, cola, lemonade, soda pop, fizzy water;
perhaps some relax the definition of what is fizzy and that lets even
more beverages into the sample. Now, you do your test(s) and apply your
conclusions to Champagne, when there wasn't a single sample in your test
cases.
Incidentally, if M.E. is only one Chronic Fatigue Syndrome
represented by CFS/ME what are the others? I have never seen another
condition attached obliquely to CFS. Treating them the same also
distorts the statistics. There will obviously be many more people with
CFS than M.E., so any figures given about M.E. deduced from CFS, will be
unreliable (Study warns of higher ME rates among pupils, Guardian, 12
December 2011). This is what CFS/ME researchers are doing and not only
preferring it but monopolising it.

Fortunately, there are independent researchers in all parts of the world
who hold this different view, that M.E. is a discrete illness of
physiological origin, which should be considered quite separately from
CFS: research commissioned by NHS Scotland, leads the way in the UK and
a paper co-authored by 26 International specialists (Carruthers et al.
August 2011), which this Research Psychologist and veteran M.E. sufferer
believes not only renders obsolete all previous criteria, including the
NICE guidelines 2007 that are still being used by the CFS/ME School but
may be even further refined in future research (just as in our analogy,
we may examine samples only from one geographical area of Champagne, or
from particular vineyards). Unfortunately, they are not getting the same
publicity or funding for work which is more likely to bring a better
understanding of this illness and perhaps one day, effective treatment.
Things will not change until M.E. researchers remove the CFS pollution.

Yours sincerely
drjohngreensmith@mecommunitytrust.org
Dr John H Greensmith
ME Community Trust.org
* * *
Dr. John is referring to the innumerable studies in which the patient selection criteria allows inclusion of those with depression and other psychiatric problems.  Studies on True CFS (i.e., ME) show that anti-depressants are useless, yet innumerable studies on polluted patient pools report cures with anti-depressants or pills+counseling.  I can tell you that a long talk with a good friend who is a psych professional certainly cheers me up, but it doesn't bring down the fever, heal the rash, or do anything for any of those other objective symptoms that are present in ME/CFS but not in depression.
 
If someone tells you (as one of my quacks did) that there are no objective symptoms of CFS, refer them to this list: Life as we know it: CFS/Fibro Symptom Checklist  There are plenty of objective symptoms, if you know what to look for, but most doctors, sadly, don't know what to look for other than fatigue.
 
 

Monday, December 12, 2011

Social Media Warning

 
Online data has also been used to dispute claims. There are numerous cases reported where someone has claimed to be disabled (a back injury suffered on the job, for example), but a social media posting contains pictures of them dancing or engaging in other strenuous, recreational activity," says Fitzgerald.

The reverse is also true. "I have been involved in claims where information I found on Facebook or online message boards have confirmed the validity of a claim," says Packer.

Sunday, December 11, 2011

A caregiver tells his side of the story, Part 1

 
"Diseases have their stories, of course.  They only have two, though, and both are written by those who do not have them.  In the first story, our heroine contracts The Disease, but The Disease never has a chance because our heroine is full of spunk or gumption or has an old soul (every folk tale has its regional variations) that The Disease cannot overcome.  Our heroine has her dark night of the soul. The Disease is a formidable opponent and looks like it might snatch her from us, but our heroine outlasts, outsmarts, out-hustles The Disease.  And we all feel better for having cheered her on.  The end.  In the second story, our heroine contracts The Disease, but despite her strength, spunk and gumption, The Disease is mightier and they march together towards her Noble Demise.  Everybody loves a good Noble Demise, one where you cry and your crying for our heroine redeems her, you and anyone who might be standing nearby." 
 
* * *
 
Unfortunately for PWCs, no one sees CFS as "The Disease is mightier".  They urge you to dig deeper and find more strength, spunk and gumption, even though you've already given it all you have.  The fact is, with most of us, we are doing everything the heroine of the first story did, and then some, but the body fails anyway ... because what we really need to do is rest, not push ourselves to overcome.  This is so counter-intuitive to most people that even when I say "the experts recommend rest", they argue with me that I need to exercise my way back to health.  Following doctors' orders to do less is considered proof that I've given up and taken to my bed in defeat, not that I'm falling back to regroup and recuperate.