First of all here is a list of books that Josiah Hincks posted on the MS List. I was very pleased to read this. McAlpine's Multiple Sclerosis was a particular book that I had kept hearing about and had never seen. To find out about a new edition as well as getting the ISBN number was excellent.

    My own answering post is more about Oliver Sacks and more general neurological books. Not medical, but books designed for the general reader. I comment on some connections that I see with MS symptoms and one of Dr Sack's stories. A new insight into Sacks is in an essay at  http://www.atf.org.au/papers/essays/o_sacks.asp#top  (The Making of Oliver Sacks  by Maureen McDermott)

From: lists.jrh@dial.pipex.com (josiah hincks)
Newsgroups: alt.support.mult-sclerosis
Subject: Re: knowledge & MS
Date: Tue, 27 Oct 1998 15:31:49 GMT

Trudy Ricker:
>Could you elaborate on the texts you have read?

the most important books, I guess, have been:

"Multiple Sclerosis." ed. J. Kesselring. 1997. Cambridge University
Press: Cambridge. ISBN 0521480183.

[Detailed about many facets of MS. Language not too difficult. A thorough synopsis of the state of knowledge as of last year.]

---

"Neuroscience for Rehabilitation." ed. Helen Cohen.
1993. J.B. Lippincott Company: Philadelphia. ISBN 039754930X

[Not MS specific but explains how damage in different areas of the brain effects function and possible implications for therapy. One of my favourites because, though detailed, it is possible to follow the presentation.]

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"Neurological Physiotherapy: A Problem Solving Approach." ed. Susan Edwards. 1996. Churchill Livingstone: New York. ISBN 0443048878

[Not specific to MS. Explains what those odd procedures are all about you do with a neurologically informed physio.]

---

"Principles of Neural Science." eds Kandel, Schwartz & Jessel. 1991.
3rd edition. Prentice-Hall International Inc: London. ISBN 0838580688.
 

[Brilliant but highly technical and huge at 1000+ pages. I’ve grown to love this book. what does it do? explains how the nervous system works. probably the most comprehensive account in one book. but it is not therapeutically orientated.]
 

also, just published is the latest edition of a standard work on MS:

"McAlpine's Multiple Sclerosis." Alastair Compston et al. 1998. 3rd edition. Churchill Livingstone: London. ISBN 0443050082.

[Very much in neurologist's lingo but packed with lots of interesting details. Weak on physical rehabilitation. Strong on appraisal of drug treatments, particularly the interferons. Would be good for quoting back at neurologists :-)]

---

There are other books I’ve read on physiotherapy - the work by the Bobath's I have found very helpful even though it focuses more on people cerebral palsy and those recovering from stroke than PwMS. if you have an interest in physical therapy for MS I suggest you start with the book by Susan Edwards reading the sections on MS and follow the references cited there.

The reading material is endless and I hope, one day, someone will produce a "user-manual" for people with MS so that they do not have to wade through turgid tomes like these to make sense of what is happening to them or what might be able to be done. best wishes, josiah.
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Hello Josiah and Trudy,

 Thanks for that list of books. Now I have to work at finding them over here! But I am back reading Oliver Sacks at the moment. I chose one of his for the book club to read, so I am re reading The Man Who Mistook his Wife for a Hat (1985, Gerald Duckworth and Co. Ltd.) (1986 Picador, Pan Books) London, ISBN 0 330 29491 1          .

      I hadn't picked it up for a couple of years. Oliver is a very human neurologist who really seems to listen to his patients and think about what is going on to the person and to the mind when things happen in the brain. I would love to see a similar work done by someone on people with MS. The lesions can be in such diverse areas that there are echoes of symptoms in quite a few of his descriptions, but not, I hope, with the same intensity. (But that may be my own denial too.)

 Josiah mentioned muscle tone and I didn't really know what he was talking about. Maybe there are clues in chapter 3: The disembodied lady (Christina), and even chapter 5: Hands (Madeleine J.). Especially Christina, who lost all sense of her body, and totally lost proprioception. There were some very real echoes here both of my own experience and of seeing a friend a few years ago.
 With inflammation of the cerebellum I had a few weeks of not being able to just reach out and pick up a cup. Of not knowing where my hands were and knocking things over. Sounds familiar? And one evening at a meeting being faced with a cup and saucer and not being able to lift the cup from the saucer! it was as good as glued on! (until I put it on the floor)   And my friend, a dancer, who met walked as if she was walking on egg shells. Very poised, balanced, careful and deliberate. Every move had to be thought. Nothing came naturally. (still MS)

 Sacks says of Christina: "There seemed to be a very profound, almost total, proprioceptive deficit, going from the tips of her toes to her head - the parietal lobes were working, *but had nothing to work with*."
 Sacks tells Christina that "The sense of the body, ... is given by three things: vision, balance organs, ... and proprioception." She had lost the latter. now vision and balance had to compensate or substitute. Like my friend the dancer, walking on egg shells.
 Christina described it herself: "It's like the body's blind. My body can't "see" itself it's lost its eyes, right? So *I* have to watch it - be its eyes."

 and again:
 "Thus, at the time of her catastrophe, and for about a month afterwards, Christina remained as floppy as a rag doll, unable even to sit up. But three months later, I was startled to see her sitting very finely — too finely, statuesquely, like a dancer in mid-pose. And soon I saw that her sitting was, indeed, a pose, consciously or automatically adopted and sustained, a sort of forced or wilful or histrionic posture, to make up for a continuing lack of any genuine, natural posture.”  And it was also the same with her voice.

 I wonder if rehabilitation (and patient willingness to work) is different with illnesses like Christina’s. A sudden onset of polyneuritis with dramatic and devastating effects that led to a year in a rehab ward and a lifetime of learned compensation. For Christina there was no remission, any movement of her body had to be learned and deliberate. Her compensation had to become a new part of her.
 Does a diagnosis of MS lead to an acceptance of disability and an unwillingness to adapt and compensate (on the part of the professionals if not the patient)?

    Reading this again in September 2000 (while the Olympics are on by the way) I am again encouraged to go to counselling to deal with the depression that I don't usually feel, but which does cause many of my own symptoms. Just how that will work I don't know, but the theory is that counselling is a helpful adjunct to pill taking. I love my pills, they are great and I doubt if I will stop them but if counselling will help as well then I should be doing it. It is like going to the gym and learning new ways of doing things.

 Back to books:   I started with Sacks’ “Awakenings” which is also the film starring Robin Williams, so it may be even more accessible. Another interesting read is Antonio R. Damasio “Descartes’ Error: Emotion, Reason and the Human Brain” (1994 Avon Books, New York ISBN 0 380 72647 5)
 I find that all of these books send me back to whatever medical dictionary or textbook I can lay my hands on. Second hand bookshops and remainder tables are useful sources.

**********************************

    A new (March 2000) idea has come from the idea of Patoms.  I think it fits in with Josiah's ideas on Rehabilitation. I wrote to the MS news group:

Subject:              Our Brain, the Patom Matcher. A new way of thinking
        Date:              Wed, 22 Mar 2000 04:30:39 GMT
       From:              lindafrd@pcug.org.au (Linda Anchell)
 Organization:              http://www.ozemail.com.au/~lindafrd/
 Newsgroups:              alt.support.mult-sclerosis
 
 
 

This commentary about how the brain works seems to fit into some of our
conversations here. It is interesting stuff. If you can't get to the web and want a copy
I could send you the text in a 16Kb mailing. (a bit big for the newsgroup I reckon.)

There is more in the article,  well worth thinking about,

                                        Linda

http://www.abc.net.au/rn/science/ockham/stories/s73842.htm

          Radio National           with Robyn Williams          on Sunday
16/01/00

          Our Brain, the Patom-matcher

          Summary:
          This talk explores the brain - what it does and how it does it.

          Transcript:

          Robyn Williams: John Ball is in business, the business of thinking. He has set up an outfit called Thinking Solutions, and has a large picture of a naked brain on his letterhead.

          His subject today is machines with brains, and what they can do; and what they can't do, very well. John Ball continued by saying:

          Today, the problems created by incorrect models and assumptions are even greater as the information explosion sees more people than ever publish. This creates the need for more selective and sceptical reading. My talk today will explore one of the last great human mysteries: our brain, what it does and how it does it. I will introduce the building block for the brain, the patom, in order to convince you that old models are holding back our progress in robotics, philosophy and psychology.

          Typically when I ask people how the brain works, they respond by telling me that the brain processes information and that this processing is very complex. This processing approach is holding back our understanding of the brain in the same way that the fixed concept of time held back physicists' progress at the end of the 19th century.

          Let's begin with a definition of the brain. We all know that the brain is like a computer, a collection of brain cells called neurons, acting like little computers within a 1.4 kilogram mass of sponge that is our brain. These brain cells process information in parallel, using unbelievably
complex techniques we are too stupid to understand. Right! Wrong!

          The brain does not process. I'll repeat that. The brain does not process.
          The brain is not a computer. The brain is a pattern-matching machine, not a  processing machine. The brain creates order out of chaos by learning patterns, and then by using these patterns in novel ways.

        ----------

          In other words, while sitting in your brain as the sensory patterns are received, you need only record the order and timing of the signals. Later, if you want to repeat those same movements, simply 'play-back' the pattern using the motor neurons that control the arm muscles. This is
pattern matching, not processing. The brain learns by doing. As children, we spend lots of time moving both ourselves and the objects around us. This teaches our brain key muscular, visual and auditory sequences used for the rest of our lives. I call this pattern matching, 'learning'.

          I need to request that Scientific American rewrite their article. They need to write that ballistic arm motion is so fast, the brain must select the appropriate stored memory to trigger the corresponding rapid muscle movements. It cannot do this with a calculation, as the brain is
too slow. Ballistic arm motion is not a mystery, it is the recall of a stored pattern.

          Let's call the group of neurons that monitor the arm a patom (which stands for Pattern-matching atom). Remember that the great scientist John Dalton said that the smallest chemical component is an atom. I am saying the smallest brain element is the patom, a collection of pattern-matching neurons. A patom is an easy way to simplify the description of the main parts of our brain, no more, no less. And I like the word, patom, as it reminds me of pattern, you know, pattern, patom, pattern, patom, pattern, patom.

         ----------snipped------------

          The key to the model is which patoms to connect where. Fortunately for us, the human brain is a great starting point!

          The brain is a collection of patoms. The emotion, fear, is a specific pattern in the brain. When the brain's patoms link to fear, part of the brain called the amygdala kicks off a precise set of actions. A cocktail of chemicals is added to the bloodstream. Other patoms in the brain, such as in the hypothalamus, medulla, cingulate nucleus and brainstem, affect muscles in the body. The reaction is complex, but specific. The fear pattern is a marvel of nature that many mammals possess.

          What of language, perhaps the most complex pattern-matching task in existence? To be creative in language, all previous experience must be available, not just words, but also the memory from vision, hearing, and emotion. The patom theory makes understanding language easy. How
else could you start to understand my comment that 'Jumbo hated it when he couldn't fit through the aeroplane's door'?

          On the radio, it is a challenge to draw the more complicated pictures of interconnections of patoms such as those that control language, but I think you get the point. Patterns are everywhere. Patoms are an easy way for the brain to capture them and for us to talk about it.
----snippety---------------------
          Remember, the brain does not process, compute, or scan. It is a pattern-matcher and user. The brain does not process.

-------------------snip-----------
          Guests on this program:

             John Ball
             Thinking Solutions,
             16 Coronga Crescent
             Killara NSW 2071
 

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