Luba's book is finally out.

[Wise Young]

http://www.nap.edu/catalog/10124.html

Luba Vikhanski's book is finally out. For those of you who may not have known, Luba is a regular visitor to these forums. She wrote a book entitled "In Search of the Lost Cord: Solving the Mystery of Spinal Cord Regeneration". In the book, she covers Michal Schwartz and other scientists in the field.

The full text of the book can be read on the web: http://www.nap.edu/books/0309074371/html/

[giambjj]

This is an excellent book. Very well written, easy to read, and up-to-date with articles on Drs. Cheng, Young, Bunge, and Kao; Mellisa Holley, Miami Cure, etc.

[dw]

Great posting!

[Curt Leatherbee]

Yesterday from Amazon for $20.00. It sounds interesting.

"Life is about how you
respond to not only the
challenges you're dealt but
the challenges you seek...If
you have no goals, no
mountains to climb, your
soul dies".~Liz Fordred

[Wise Young]

Luba cites this web site for some of her information and the realization of the urgency of the need for cure. Wise.

[etexley]

"You know what my biggest fear is? That instead of recovery, we may produce pain!" Now what are the chances of that? Pain is a form of recovery, is it not? Wouldn't the chances of JUST PAIN CIRCUITS being generated be significantly less than ALL the circuits being regenerated? I would think it better the chances of being kidnapped by aliens.

Eric Texley

[Wise Young]

Eric, the likelihood of aberrant connections resulting from regenerative therapies is high. It is worrisome that a therapy may stimulate sprouting of small fibers that produce neuropathic pain instead of nociceptive sensation (painful sensation) or proprioceptive sensation (touch and position sensation).

I have heard many anecdotal studies from people developing painful hypersensitivity in parts of the bodies that are recovering. These can range from pins and needles to full-blown neuropathic pain.

Of course we must not let our worries stop the research but it is good to worry and also to let people know that regenerative therapies may be associated with pain.

Wise.

[Chris Chappell]

who haven't read this book you should. You may think you're up on the research but are you really?

This should be required reading by every patient, doctor, researcher, neuro-anything, PT, OT, caregiver, etc. associated with sci.

Spend the money or ask Santa for a copy but read this book. http://sci.rutgers.edu/forum/images/smilies/cool.gif

[hirar]

Many research scientists may agree that critical review of research literature and producing a final material in synthesis requires more efforts and knowledge thatn conducting a more focused research project. In the sense, I do agree that this book is well written. By the way, this is my first post, but I have been benefiting a lot from this website. This site has been very informative, and I feel very fortunate to be able to hear more "inside" stories of individual patients that we may not read in professional journals. Thank you all http://sci.rutgers.edu/forum/images/smilies/smile.gif

[Curt Leatherbee]

I ordered it through Amazon and just finished it the other day. Great book..

"Life is about how you
respond to not only the
challenges you're dealt but
the challenges you seek...If
you have no goals, no
mountains to climb, your
soul dies".~Liz Fordred

[Wise Young]

Just kicking this topic up to the top. Several people have asked about this book. You can read it on the web but this is a great Christmas stocking stuffer. Wise.

P.S. Please note that I don't get royalties on this book and, although I have read most of it in drafts, I am saving it for reading over the Holidays.

[Jeff]

for us forum posters. I loved the prologue where Dr. Young is mentioned, also SCIWire; and X-Racer is quoted. It shows some of the impact of our forum. I plan to order the book as Xmas gifts but am reading it online, for now.

~See you at the SCIWire-used-to-be-paralyzed Reunion http://www.stopstart.fsnet.co.uk/smilie/wavey.gif ~

[X-racer...]

I'm afraid to ask what I was quoted saying, looks like I'll have to read the book. (boy i hope i didnt make an ass out of myself)


LIVE IT UP AND LIVE IT LARGE!!!!

[Jeff]

Here's the page:

http://members.infomak.com/jlweeks01/xracer.gif

~See you at the SCIWire-used-to-be-paralyzed Reunion http://www.stopstart.fsnet.co.uk/smilie/wavey.gif ~

[X-racer...]

WOW I think i made that comment on the old spinewire just before it became CANT DO. Not a very up lifting comment but i think its a true and not to often protraded thought or feeling SCI people have. I'm glade she put it in, I wish she would have e-mailed me for my real name, but then again X-Racer tells you alot more about me than my real name.


LIVE IT UP AND LIVE IT LARGE!!!!

P.S. I've been thinking of using "SEX IS NOT THE ANSWER, SEX IS THE QUESTION, YES IS THE ANSWER" in stead of LIVE IT UP--- any comments????

[Jeff]

on the Relationships & Sex forum but might be a little conspicuous elsewhere, IMO. YMMV. http://sci.rutgers.edu/forum/images/smilies/smile.gif

~See you at the SCIWire-used-to-be-paralyzed Reunion http://www.stopstart.fsnet.co.uk/smilie/wavey.gif ~

[X-racer...]

Jeff,

YMMV???? http://sci.rutgers.edu/forum/images/smilies/confused.gif


LIVE IT UP AND LIVE IT LARGE!!!!

[Jeff]

Your Mileage May Vary. It's an automobile industry expression that has taken hold in many Internet circles. Kinda means, "it applies to me but maybe not to you."

~See you at the SCIWire-used-to-be-paralyzed Reunion http://www.stopstart.fsnet.co.uk/smilie/wavey.gif ~

[Wise Young]

A glowing review of Luba Vikhanski's book in Nature Medicine. The review was written by Jeffrey L. Goldberg of the Department of Neurobiology, Stanford University Medical School, Stanford, California, U.S.A.

http://www.nature.com/cgi-taf/DynaPage.taf?file=/nm/journal/v7/n12/full/nm1201-1275.html



"In Search of the Lost Cord: Solving the Mystery of Spinal Cord Regeneration".

by Luba Vikhanski
National Academy Press, 269 pp,
$27.95
ISBN: 0309074371, 2001

Here is a twist on scientific storytelling: take a major clinical problem that everyone recognizes, and tell a gripping tale of the race for a solution before the problem is solved! With no need to focus on the 'winning' scientist or therapy, all research seems rich with potential and every scientist is one step from gold. In Search of The Lost Cord exploits this method to detail the hunt for the secret of spinal cord regeneration. In writing it, Luba Vikhanski interviewed 150 scientists and clinicians working on spinal paralysis, and weaved their stories into a gripping 200-page cliffhanger that is enjoyable and informative for scientists, clinicians and the public alike.

Understanding why our brain and spinal cord fail to repair themselves after injury is a problem that has plagued physicians and scientists since pen was put to papyrus. An estimated two million people worldwide suffering from spinal cord injuries have permanent impairments in functions the rest of us take for granted-walking, bowel and bladder control, sensation and sexual activity, even breathing. But excitement is mounting that a cure will come, as over the past few decades scientists and clinicians have initiated hundreds of studies that suggest that regeneration research is not such a dead end after all.

Great history writes itself, and Part 1 vividly describes the history of spinal cord regeneration research in this past century. The first few players will be recognizable to those in the field as individuals who have played prominent roles by virtue of the questions they have posed. Will neurons re-extend their axons after injury in the brain or spinal cord? Vikhanski recounts Cajal's scientific scuffles with his "arch-enemy" Golgi cementing the neuron theory of the brain, and his fundamental subsequent observation that unlike peripheral nerves, spinal cord axons sprout a little but fail to regenerate beyond injured spinal cord tissue. Was this failure a problem with the neurons or with the environment? Cajal's student Tello performed peripheral nerve transplants into the brain that showed neurons would regenerate at least short distances if given a favorable environment. Short distances-but isn't the spinal cord rather long? Seventy years later Aguayo improved the transplant concept to demonstrate that a favorable environment actually allowed long-distance regeneration of a small percentage of spinal cord axons. The 70 years between Tello and Aguayo and those since are filled with lively characters-many of whom are still at it today-and with important advances that have kept regeneration research alive. Vikhanski paints their "struggle against the impossible" in colorful detail.

Â*

Â*

Â*

The book's subtitle should not mislead readers into thinking that science has arrived at a solution. There is no cure for spinal injury as yet, although human trials are now beginning for a handful of the current new strategies. Rather, it is the scientist's love of a good mystery that Vikhanski relates in Part 2. For example, how is the central nervous system different from the peripheral nervous system, which regenerates after injury? When our immune cells spill from the blood vessels into the site of a spinal cord injury, are they doing more harm than good? Why are axons guided in the right direction during development but not during adulthood? If our spinal cord 'learns' how to walk when we are babies, why does it not 're-learn' after an injury? These chapters whirl the reader through investigations arising from such questions: studies on coaxing the immune system into line; the science of reversing axon guidance mechanisms that may block regeneration in the adult; and research on novel therapies with stem cells and neural prostheses, which are neuro-silicon interfaces that bridge injured tissues electrically. The thread binding the chapters into a coherent whole is lost at times, and we could criticize this section for short-changing recent approaches stemming from genomics and proteomics that are exciting the scientific and clinical worlds. But there will always be one more line of attack as technology surges ahead, and these chapters do a good job of presenting how the mysteries drive the science forward in the hope of clinical benefit.

The Lost Cord is directed at the widest possible audience, and no one will waste an afternoon reading this book. Those in regeneration research will find the history in Part 1 most compelling but the ongoing research in Part 2 perhaps less so. Physicians and scientists in other fields who may be interested in the research and treatment strategies described in Part 2 will find the writing style slightly below their level of sophistication. Reference comments and sources are endnoted where they do not bog down the text, but they are not complete, and a number of unassigned quotations may bother the careful reader.

And for the general audience? The Lost Cord is characterized throughout by careful explanation without condescension. There is even an excellent appendix on spinal cord anatomy and function that is simple and clear for any reader. Indeed, Vikhanski should be recruited to interview 150 scientists in another developing field, as the scientific world is well served by such an easy to read communication of the scientific process. The book is a window into how scientists formulate questions and share results, assailing the problem of spinal paralysis from many directions. In this respect, The Lost Cord is both educational and captivating.

Ultimately, though, can you enjoy a story without a happy ending? Hollywood may say no, but I say yes. A 3,500-year old Egyptian papyrus referred to spinal cord injury as a "disease that cannot be treated," and in large part this holds true today. But tomorrow? We'll reserve one more chapter for Vikhanski to add when tomorrow finally comes.



[This message was edited by Wise Young on December 20, 2001 at 03:26 PM.]

[mk99]

I got my copy about 2 weeks ago and am almost done. It is a well-written book. I think it should be read by all Dr's & Surgeon's who have interaction with SCI patients.

Instead of "You will NEVER walk again" they may start saying "There is no solution RIGHT NOW but the future might be much brighter". Big difference for a patient to hear.

Then again many of these people have no bedside manner at all and their human sensitivity is so badly developed I would call it borderline retarded. How sad.

[Jeff]

I did my acute hospitalization at a teaching hospital in VT. Once, when the whole crew came through, the top dog asked a question of the lowliest med student which he couldn't answer. Soon the interns and residents also couldn't answer. Hating the pressure in my hospital room I answered the question. My answer must have been correct because the doc said, "Shut up!" and then turned on his heel and left. His entourage quickly followed him leaving me and my nurse to laugh our asses off.

It's a little off-topic but it's the first thing I thought of when you mentioned bedside manner.

This was the same doc that predicted I'd get use of my hands back. Half a year later, while hanging around for hours on a stretcher, waiting for an IVP, he came across me and stopped. He looked at my hands, which had not developed tightness and said, "Good looking paws." It was the first time I realized what he might have meant by getting use of my hands back. Even though I had extension and no flexion I was getting better at using my hands and literally WAS using them, again.

Amazing what you remember.

~See you at the SCIWire-used-to-be-paralyzed Reunion http://www.stopstart.fsnet.co.uk/smilie/wavey.gif ~

[calico]

Those of us who have most of our physical function but neuropathic pain couldn't agree with you more re: these concerns. It seems that those in the spinal cord research/patient community should focus equally on cord regeneration, understanding how pain operates and how it can be cured.

One more front that needs to be fought along with all the others. We are up to the task.

Calico

Originally posted by Wise Young:

Eric, the likelihood of aberrant connections resulting from regenerative therapies is high. It is worrisome that a therapy may stimulate sprouting of small fibers that produce neuropathic pain instead of nociceptive sensation (painful sensation) or proprioceptive sensation (touch and position sensation).

I have heard many anecdotal studies from people developing painful hypersensitivity in parts of the bodies that are recovering. These can range from pins and needles to full-blown neuropathic pain.

Of course we must not let our worries stop the research but it is good to worry and also to let people know that regenerative therapies may be associated with pain.

Wise.

[mk99]

Calico, what level of functioning do you have and how is your pain?

I wonder how many people choose walking with a lot of pain vs. very little pain and life in a wheelchair. I suspect I would go with the walking & pain option... it depends on just how bad the pain is & other issues such as bladder/bowel/sex, etc.

[calico]

I am not in a wheelchair and have a very mild spinal cord injury compared to most people here.
I've had intractable neuropathic pain for four years.

My hope for everyone here is that they will never have to make the choice between function and, as Dr. Wise noted, the unintended consequence of neuropathic or other chronic pain. I pray for there to be enough progress on the pain research/treatment side, as well as the function side, so that this devil's bargain will not need to be made.

I realize that many people, if faced with the here and now lack of function and the possible outcome of chronic or exacerbated pain would choose the function. I don't want them to have to make such a choice but realize many would welcome the opportunity to make it.

Support for pain research, in addition to and not in lieu of function research, strikes me as a desirable path.

Calico

[QUOTE]Originally posted by mkowalski99:

Calico, what level of functioning do you have and how is your pain?

I wonder how many people choose walking with a lot of pain vs. very little pain and life in a wheelchair. I suspect I would go with the walking & pain option... it depends on just how bad the pain is & other issues such as bladder/bowel/sex, etc.[/QUOTE

[Chris Chappell]

Having some neuropathic pain already I would trade it for function any day of the week.

I believe that if I (we) could get up and get moving the challenge of pain would be tolerated until that hurdle was also crossed.

Give me an inch and I'll take a mile.

[Chris Chappell]

a friendly reminder to those seeking "cure" related material.

Maybe some of those members of New Mobility should get a copy and read it, twice.

I think Luba's book says alot about the progress of research and more specifically the pace of it within the last five years.

I understand that we all want to be cured yesterday but putting into perspective I've think we've come a long way in a very short, concentrated time.

[Chris Chappell]

The price on this great book is under $20 new. $14 used through www.amazon.com (http://www.amazon.com).
For those who can afford it you may want to consider donating copies to your local sci hospitals, groups, patients, etc.

I am donating 10 copies per quarter (40/yr) to Craig Hospital. About $800 in write-offs.

It's made a big difference in patients, staff, administration's philosophy, attitudes, opinions, motivation towards understanding where we are in relation to a cure.

Onward and Upward!

[Chris Chappell]

Any new members out there. You should read this book. Hardcopy or online (free).
Jeff posted a link or read through the thread and you'll find the link.

Every once in a while I'll keep resurrecting this thread. I think its very important. Education.

Onward and Upward!

[Chris Chappell]

Just finished reading this for the second time.

Has everyone read this at least once? Meeker? Star? New members?

No excuses, REQUIRED READING.

And why not, its free to read online!

Onward and Upward!

[mk99]

No doubt about it, it's a great book and all of us here should read it as a primer.

I hope there is some kind of followup in a couple of years... actually I hope even more there will be something new worth following up on.

I think I could accept my SCI if the science for a "cure" was nowhere on the horizon... then I'd have no choice. It makes it much harder when things seem so close but still unattainable. Frustration does not even begin to approach the feelings I have towards this goal. One day at a time right?

[kate]

I read it last winter and had to keep slowing myself down . . . that book is what convinced me that the cure is within the realm of possibility. Plus, I love the way she unraveled all the threads that are part of this damn puzzle, carefully introducing all the players (scientists, doctors, even a couple of patients). It's scary when you get to the part about how amazingly complex a critter the cord is.

Anyway, yep, required reading for all of us. And I can't wait for the revision she'll do with a final chapter telling how the last pieces fell into place.

[dogger]

Chris , i see you quoted a price of just under US$20.00 . i just priced this book in Australia , A$80.00 [about US$40.00] , think i might be reading it online .bit i have read so far is very interesting .

[Chris Chappell]

Arnie, Meeker, Have you read this book?

If you haven't you should.

Onward and Upward!

[Wise Young]

Dogger, on the same site that you are reading the book, you can look for the price. The hardcover version is $22.36 but there may be some shipping charges.

http://www.nap.edu/catalog/10124.html

[dogger]

i have just ordered this book , using information from this thread i found one at www.amazon.com (http://www.amazon.com) , US$22.80 [new and delivered] as compared to US$42.40 [plus delivery] from an Australian bookseller . this is another area in which our government rips us off , any books printed in the U.S. have to be reprinted in either the U.K. or Australia , work that one out ? maybe the U.S. has ''the farm bill'' and Australia has ''a book bill'' . http://sci.rutgers.edu/forum/images/smilies/confused.gif
thank you again Dr. Wise Young .
dogger

[Chris Chappell]

I noticed that we've got 165 new members to the forums this month so I'm bumping up this thread for anyone who hasn't read "In Search Of The Lost Cord".

Go to www.amazon.com (http://www.amazon.com) to order. About $20. A steal considering that the information, imo, is priceless.

I consider it a must read for every sci patient, family, doctor, therapist, etc.

Go and get it. You won't be disappointed.

Onward and Upward!

[sinbad]

Process approach

This International Standard promotes the adoption of a process approach when developing, implementing and improving the effectiveness of a quality management system, to enhance customer satisfaction by meeting customer requirements.

For an organization to function effectively, it has to identify and manage numerous linked activities. An activity using resources, and managed in order to enable the transformation of inputs into outputs, can be considered as a process. Often the output from one process directly forms the input to the next.

The application of a system of processes within an organization, together with the identification and interactions of these processes, and their management, can be referred to as the "process approach".

An advantage of the process approach is the ongoing control that it provides over the linkage between the individual processes within the system of processes, as well as over their combination and interaction.

When used within a quality management system, such an approach emphasizes the importance of

a) understanding and fulfilling requirements,

b) the need to consider processes in terms of added value,

c) obtaining results of process performance and effectiveness, and
d) continual improvement of processes based on objective measurement.

The model of a process-based quality management system shown in Figure 1 illustrates the process linkages presented in clauses 4 to 8. This illustration shows that customers play a significant role in defining requirements as inputs. Monitoring of customer satisfaction requires the evaluation of information relating to customer perception as to whether the organization has met the customer requirements. The model shown in Figure 1 covers all the requirements of this International Standard, but does not show processes at a detailed level.

NOTE lnaddition, the methodology known as "Plan-Do-Check-Act" (PDCA) can be applied to all processes. PDCA can be briefly described as follows.

Plan: establish the objectives and processes necessary to deliver results in accordance with customer requirements and the organization's policies.

Do: implement the processes.

Check: monitor and measure processes and product against policies, objectives and requirements for the product and report the results.

Act: take actions to continually improve process performance.


MY COMMENT :IF WE ANALYZE EACH SCI PROCESS(REHABILITATION,URINATION,BOWEL ,BLADDER,PAIN ETC) WE CAN SEE THAT THERE IS VERY LIMED THING IS DONE TO IMPROVE PROCESS PERFORMANCE

EXAMPLE :IF YOU COMPARE THE PROCESS PERFORMANCE OF THE REHABILITATION WHICH IS DONE 1945 AND THE REHABILITATION PERFORMANCE WHICH IS DONE 2005 YOU CAN SEE THAT VERY VERY MINOR CHANGE.

WHERAS BEGINNING FROM 1945 TO 2005 USA GOVERMENT SPENT 500 TIMES MORE FINANCIAL BURDEN.


BUT IN THE CASE OF TUBE BABY PROCESS YOU CAN SEE THAT PERFORMANCE OF THE 2005 IS 1000 TIMES HIGER THAN THE PERFORMANE OF THE 1980.


SCI CARE IS THE LOWEST OUTCOME PROCESS AND PRODUCE NO "VALUE ADDED VALEU"

[Chris Chappell]

Sinbad, huh?

This is a thread about a very good / important book.

Let's keep on topic for all those who may benefit from it.

Thank you.

Onward and Upward!

[Schmeky]

Just ordered it, look forward to reding it.

[dogger]

i have just finished reading this book for the fourth time in less than 2 months . i have learnt a lot from it and feel a copy should be given to every SCI while they are in hospital .

thank you
dogger

[Chris Chappell]

As is customary I'm bumping this up for the new members and anyone else who hasn't read:

"In Search Of The Lost Cord"

It's well worth the $20.

[Misa1]

its a good one, read it all in one day

[Schmeky]

Yes, I have read it also. I found the history of SCI research interesting, but it also pointed out how far research has yet to go. I think Luba did a credible job of amassing the info she had privey to, but to claim history may have to be rewritten in the near future is hopelessly optimistic. I guess it depends on how you define "near future".

Government regs, lack of funding, scarcity of resources, lack of research collaberation, and the low percentage ratio status of the SCI community (compared to AIDS for example) conspires to make her book less than accurate as far as an applicable real world cure is concerned.

She spent no time discussing funding, politics, religious, and subsequent moral issues associated with SCI research. Don't get me wrong, this book is relatively well written and well organized, I just think it may give the SCI sufferer an overly optimistic outlook. We still have a long way to go.

[Morgan]

Yes, i read it , too, last November and got angry afterward. Not because its not right on, but because we are so many years away. Angers a bitch.

Live for today, look to tomorrow

[Chris Chappell]

bump for newer members.

A great book and a great way to educate yourself concerning sci cure related research.

[dogger]

i'm bumping this up so new members can get access to this book [it can be read online ] . it is very informative about the progress of SCI research .
thank you ,
dogger

every day i wake up is a good one .

[Chris Chappell]

bump.

Echoing dogger,

I strongly encourage everyone associated with sci to read this book - twice. http://sci.rutgers.edu/forum/images/smilies/smile.gif

[john smith]

BTW, I read this book last fall. I strongly recommend it as a primer on the development of SCI research. It is exciting to read and the Science is easy to understand. It reads more like a novel than a Science text.

John

"Hope is like a road in the country; there was never a road, but when many people walk on it, the road comes into existence." Lin Yutang

[Myc0]

I was just checking out the book forum, which for some reason I hadn't noticed before, and saw this thread. I have not read this book but plan on reading part of it online, and if I like I'll buy a copy and finish it. I just wanted to give it a bump since so many people here liked it and I think it's always positive to encourage literacy. If I could just put down the Stephen King books that tie in to my Dark Tower obsession. I'm also curious what the quote taken from X-Racer, a guy on this board was?

[lynnifer]

Myc0 - I'm a big Dark Tower fan myself. Always thought if I had a son, I'd name him Roland - lol.

[christopher]

I loved The Dark Tower! Those, Misery and the Bachman books are my favourite Stephen King books. Clive Barker's good too, for that 'parallel universe' kind of thing.

[Summer985]

its a good one, read it all in one day


Cool! ~ Summer