About two weeks ago, Posit Science was visited by a family who appeared to have greatly benefited from the use of our Brain Fitness Program. This family’s story began with a late-night boating accident involving a beloved young son, circa 20 years of age. The boat that Ryan was riding in was struck by a second speeding boat. He was thrown overboard in the accident, and his skull crushed between the two boats. Direct injury to his brain, and further damage from subsequent bleeding and from the shards of bone embedded within the flesh of the brain was extensive. In this live-or-die situation, significant sections of his damage frontal lobes were necessarily further compromised by the surgery that was required to remove multiple bone fragments from his brain.
Ryan was stiff and spastic. There was no indication that he heard or understood what was said to him. He was incapable of any voluntary response. He could not talk. His parents were told that he would never recover, that that he would have to be maintained in a hospital or nursing home environment or the rest of his life.
His parents rather quickly began to understand that rehabilitation therapy in the hospital setting that he was in (typical, for the US) was simply not going to help him very much, in large part because the professionals there saw no value for, and held out no real hope for his recovery. Ryan wasn’t the only Reitmeyer with grit and determination; his father and mother simply did not accept this situation. Doug Reitmeyer threw all of his energies into trying to understand his son’s neurological situation, and quickly came to understand that his medical team (as is typical, in the US) just didn’t have much understanding what rehabilitation strategies COULD succeed (if success was possible) for a patient like his son. Ryan’s father and mother spent every waking hour with their son, embarking on their own personal rehab program. Ryan’s father Doug scoured the literature and for new approaches that might help his son.
In the meantime, Ryan slowly regained his speech understanding and speech production, but had a very poor memory, limited cognitive abilities, and provided mom and dad with lots of evidence of disordered thought. His father had discovered Posit Science in an Internet search, and he contacted us, asking if I thought that our programs could be applied to his son. I told him that if he agreed to have the son evaluated before and after training, we would provide the program to his son, and believed that it would help him.
Ryan made dramatic improvements through the course of his Posit Science Brain Fitness Training program. I wish you could have talked with Ryan when he visited us late in September. Ryan looks a little unusual because a significant part of his frontal cortex has been lost, his skull has been through elaborate reconstruction to replace lost bone with metal and to repair hundreds of little fractures, and his hair patterns bear the scars of repeated surgeries. At the same time, Ryan now has a GOOD memory. He is clever, funny, a delight in conversation, and cognitively, completely in control. Ryan loves his mom and dad (as well he should!), and his social abilities are outstanding. Ryan takes care of himself. He has passed a driver’s license exam, and drives around on his own. He can remember the words and melodies of a hundred songs. In a phrase, Ryan is back with us! His situation was NOT hopeless. RYAN IS DOING JUST FINE.
There is little question that the Brain Fitness Program made a large contribution to Ryan Reitmeier’s rehabilitation (the therapist who was caring for him has ordered a bundle of these programs for other patients like Ryan). At the same time, it sure doesn’t hurt to have parents like his, and it was a very lucky thing that they ultimately led him to more informed doctors and to more effective therapeutic approaches!
One of OUR main goasl at Posit Science is to progressively improve our ability to help individuals like this very special young man.
autismspeaks.org”Neural Retraining Initiative”
One of the largest initiatives of the Autism Speaks organization.
http://www.autismspeaks.org/science/research/initiatives/neural_retraining_initiative.php
“One of the most exciting stories in neuroscience in the last decade is the idea of neuroplasticity – the concept that the brain continues to grow, add new cells and change throughout life. There have been amazing breakthroughs in the treatment of stroke and dyslexia through neural retraining. Using specialized education techniques, the brain may be able to rewire around damaged or undeveloped areas and re-regulate the way it deals with sensory input.
Cure Autism Now is interested in bringing these techniques to bear on autism to find non-pharmacological ways to retrain the brains of the very young and those most affected by autism that in many instances are not able to speak at all.
The initiative began with a Genius Award to Dr. Michael Merzenich from the University of California, San Francisco who is a leader in this field and the developer of Fast ForWord – a family of programs that has been very effective in helping those with dyslexia rapidly improve language, reading and learning skills.
As a result of his Genius Award, Dr. Merzenich is working on project titled, “Development of a New Generation of Computer-Implemented Training Tools Designed for Therapeutic Application in Children with Autism Spectrum Disorders.” The primary objective of this research and development project is to design, produce, and test the application of new training tools designed to ameliorate the expressions of Autism Spectrum disorders (ASDs).
Initial funding is supporting studies designed to provide crucial preliminary information that will help set up the accelerated development of these new treatment strategies. The outcome of this effort is hoped to be a combination of tools and techniques that could make a significant impact on those severely affected by autism.”
Dr. Merzenich:
The above article indicates that you are designing training tools to treat ASDs. I wonder how you design these training tools. Do you do so based on your theory about what you believe, could, provide benefits for those with autism? Or do you base your training tool design on experimentation with autistic persons, during which you find that certain things seem helpful, and other things not?
The above article states that you are designing training tools to “ameliorate the expressions of Autism Spectrum disorders (ASDs).” What is your basis to think this is possible?
To me, it seems that there is speculation at each stage indicated in the above article
I’ve also seen some testing of your Fast ForWord family of programs, and will speculate that they, as they are for the other conditions and states you treat (dementia, dyslexia, memory etc), are no more useful than other well known therapeutic approaches. I think they are novel treatments only in the sense of getting the computer involved, making it easier and more accessible in this way, more cost effective, and perhaps more motivating in this way. I also think there are grave limitations of your computer programs, as they are involve a level of mental engagement that is completely unlike what one encounters in the world of natural and social stimuli.
I will speculate that none of your programs will impact any of the basic features of autism significantly. That you will not “ameliorate the expressions of Autism Spectrum disorders”, and not do so in any significant way.
In reading your various success stories of your Fast ForWord programs on this blog of yours, I find that they often read like info-mercials. I find the commercial aspect of Posit Science to be unfortunate, and the advertising and marketing of your products to be unfortunate.
I’m impressed at how, at this speculative level, it is found there is warrant for your computer programs for other conditions to be designed more specifically for autism, and again, wonder how you know what to design, and how you are able to assert that the programs are being designed to “ameliorate the expressions of Autism Spectrum disorders.” Is there warrant for this assertion, or is it a hope with no autism related practical basis, and instead, a hope based on far reaching extensions from the results of your computer programs in treating other conditions unrelated to autism?
I’m amazed that this seems to be a major project of Autism Speaks, in light of the high speculation. Wouldn’t it seem indicated to first design your programs, and then do extensive testing with several ASD persons, and then, if there are any significantly positive results, to then move forward with creating this Autism Speaks initiative and the funding to support it?
Dr. Merzenich I have to say that I think you have been unfortunately cowardly with regard to the matters we have discussed. I find your unwillingness to do full inquiry to be surprising and unacceptable, and all I can think of is that this arose from cowardice. You had the opportunity – I provided it to you and requested a few times since May that you take more of an opportunity – and I thought that things would be thoroughly and exhaustively investigated. I find this to be the case with Bonneh as well.
I’ll confidently state that your computer programs will not be of any help in improving the core symptoms of autism in any significant way, and time will show this I believe, and it will be extremely unfortunate that all of the years will go by and all the money directed toward this. As has been the case with, every, other attempt to treat autism. I find your hopes to speculative at every level, that the business and money-making aspect of this to be very saddening.
I also think you have not taken advantage of acquiring a better understanding of certain foundational aspects of autism. And your current understanding is based on the high vagaries provided by Grandin, Williams, and Tito.
Your time and interests clearly seem to be centered around money and business. It is apparent in many ways, from your highly speculative initiatives, to your persistent infomercial-like advertising and marketing, to the creation of your company Posit Science. I find this astoundingly money-centered drive to be extremely unfortunate.
It was interesting meeting you and the others. My basic expectation was for the seriousness, thoroughness, and care of academics, and what I encountered was very far from this, and something I do not do in my own work, and something I’ve never encountered at Colgate or the U-Chicago.
You were provided the full details about various things, and I find your lack of curiosity, Bonneh’s poor conceptual abilities in understanding simple things, Bonneh’s extreme delays in completing simple test results (causing months and months to elapse with little if any work done), to be possible contrary to the well being of many people. Your actions, priorities, money-centeredness, lack of curiosity, lack of courage to do a full inquiry into what you and I spoke about, etc, to be very unfortunate.
I agree with Dan.
Yes, yes, ‘humanization’ is the key.
‘Computerization’ and technologies can lead to so called ‘claims’ of various successes. But still limits it. (Ask the cave-man. He knew it when he was inventing how to make fire!)
Let us therefore add the ‘human element’, and not profit from the promises of tech-graphic-education-training-whatever-we-are-selling.
HO-HO! Lacking in courage of the Cave-man,
Tito Rajarshi Mukhopadhyay
Dr. Merzenich:
Obviously I’ve changed my approach. Given that 5 months has elapsed since my visit to UC-San Francisco, and given that you and Dr. Bonneh have not done anything constructive in this extremely long period of time, and have outright failed to uphold several of your promises to me, I now approach you and he with the seriousness of the matter, and ask you to start taking steps, and ask you to uphold your promises, and ask you to understand the opportunity you have been provided, and ask you to be more humanistic and charitable with some of your time, and ask you to do a basic inquiry into things, and ask you to have the courage to make full pre-treatment observations and analyze the long and well documented medical history, and ask you to respond when you are written to out of basic respect, and ask you to respect the efforts that were made to travel to UCSF.
I’d advise you to have the courage to follow an option that arose from practice rather than theory.
I’d advise you to have your theory informed by this practice. Or, to adopt new theory in light of the practice.
With regard to autism, I think your theory gravely limits your conceptual and observational understanding of autism, and your approach to treating autism.
I’d advise you to consider that science (in general) has never and is not close to providing a treatment for autism that brings about even the most minimal improvements in the core symptoms of autism, namely the social deficits. Each scientist and organization thinks they will do so, and the years and decades go by with nothing that has done so. I will speculate, as is the case with a multitude of other medical conditions of a similar nature, that you will never succeed; and I don’t mean in developing a cure. I mean in simply developing a treatment that brings about even minimal improvements in the core symptoms of autism.
When Autism Speaks mentions in regard to your â€Neural Retraining Initiative†(see post #1 above) that your plasticity based family of computer brain training programs is being designed to “ameliorate the expressions of Autism Spectrum disordersâ€, what is hoped to be accomplished by this amelioration? This is a negative approach, that is, the removal of symptoms, or put another way, the removal of unwanted abilities. It says nothing about the development of abilities.
While of course I think it is valuable for you to continue with your efforts, I also maintain what I mentioned above.
I was astounded to encounter Dr. Bonneh’s work on his auditory program. How it is throughly speculative at all levels, and how he thinks it can be tested for preliminary efficacy in 30 second to 1 minute intervals, and while sitting in an essentially sensory deprived room and while focusing on the sounds themselves. I mentioned to him that it must be tested fully in a wide range of usual daily activities, and over many hours and many days. He was not interested in this. I told him that autism is a functional disorder, testing of any treatment must be done during functioning to assess it’s results. I was amazed at the excitement that he needs to be motivated by, and his need to search for a “cure”, even though he, you, and everyone else is so far from this that the suggestion of it should never be made. You should be searching for a minimally effective treatment to start, which you and others have never developed in my view: what therapeutic approaches there are do, to be sure, have some impact, but not the kind of impact I’m referring to. The first impact that is needed in order to be considered a minimally effective treatment is to begin the entry into the world of sustained exchange of eye gaze/expression and facial expression with both people, and, more unilaterally with the natural environment, the decrease of the highly chaotic mental content, and ability to appreciate and engage in a sustained way with sensory stimuli, etc. The most fundamental ability in my view is the first one mentioned above, from which the others will be entailed, in my view.
Yes as I said before somewhere-
‘Science is necessary
Scientists are accessories!’
So its good to watch the scientists at work and push the buttons of our own video games, so that they can do something like selling ‘whats-it-called’ for mankind who find them necessary.
But I stll lack the courage.
-
Tito Rajarshi Mukhopadhyay
Daniel, my son has autism. He enjoys playing with video games as PSP, XBox, etc. He is 22, lives in a group home, attends a work-school prgram, and reads a variety of books. He enjoys videos, drawing, and learning about history. I know that He can be helped with stem cell research. I believe that this is the key.
About Ryan (main story).
Had he tried any other therapies or interventions to target improving his memory? If so, which one’s, and how long did he try them?
Kim
Hmmm…..I don’t think anyone answers any questions here.
Well…maybe someone will some day
Or maybe a new blog is on its way.
Can’t say for sure!
Okay…let me check it out with a test question-
‘How many fingers are there in a neuro-typical person’s wrong hand?’
Will someone answer?
Maybe someone will some day.
Or maybe a new blog is on its way.
Can’t say for sure!
-
Tito Rajarshi Mukhopadhyay
OK…lets see if someone answers questions on brain…
1. Why is brain called a brain and not anything else?
2. Why is brain in the head and not on someone’s nose?
3. Why the hell does the brain think?
4. And can someone tell me what the brain thinks why the wrong hand is not the right hand?
(I am in a state of a coiled up question. HELP!)
-
Questioningly yours’
Tito Rajarshi Mukhopadhyay
New year comes every year on this spinning planet of wisdom, concerns, hunger, war, differences and what not with 1st of January as a ritual!
Every New Year I sit on the bright red spot of Jupiter and watch the spinning earth grow up another year in its endless purposeful spin. I call it purposeful because things happen for a purpose- so say the texts written by those wise men of the past whose words are read through all generations. I wish those wise men of yore in yonder past wrote something about disability other than some localized instances of miracles and healings.
If I was one of them, I would have included Autism.
Alas I am not.
Here in Jupiter, New Year on earth is just a position of the Blue planet called Earth (we call it something else in Jupiter) relative to the sun, Mars and other planets. And everything Einstein said is ‘relative’. So is the Earth’s position on January 1st.
But it still is a New Year! And so my wait is over, because my book ‘How Can I Talk if My Lips don’t Move?’ will be officially out on the 9th of this month. My publisher send me the copy. I am satisfied. But my satisfaction is not enough.
I wish you would read its words and let me know how well or not well I have written my words. I have dedicated it to ‘you to whom my words matter.’ It is more updated than the Mind Tree. I would sit on the red spot of Jupiter and wait for your words of reaction.
Till then I can watch the earth spin and wish there was a huge mirror in space so that the earth could watch itself spin through its reflection making a whole big optical confusion for an alien spaceship while I flapped my hands right here on Jupiter!
Happy New Year!
-
Tito Rajarshi Mukhopadhyay
I have a son aged 27 who has schizophrenia, have you a program for this yet and how much would it cost to buy. We have been told repeatedly that he cannot learn, he has however taught himself guitar and the mouth organ and regularly attends classes where for example his teacher says that his story writing is excellent. I have seen one of his essays and it was excellent. If there is any tool available suitable for him please let me know. If you want I could phone Dr Merzenich, if so please give me a number by email.
If I was him I would try and market my stories.
If I was him I would not bother about my social label.
If I was him I would e-mail someone called Tito Rajarshi Mukhopadhyay and exchange my thoughts with him.
But I happen not to be him.
And I happen to introduce my self as a humble offerer of friendship-
-to him-
-as he happens to be him.
-
Tito Rajarshi Mukhopadhyay
Who can tell how many kangaroos can secretly fly in the air when they are sure that no one is looking?
And who can tell whether or not there were invisible kangaroos flying in air around the bus, in which I was sitting, secretly? One of them could be right by my side in the bus staring at me cross-eyed!!!
!!!
I wished that this invisible cross-eyed kangaroo and other invisible flying kangaroos would reveal themselves to me at some point or the other, although they were bounded by a solemn oath of secrecy taken under a full moon in their kangaroo blood- a part of kangaroo-ism.
There were eight passengers including me sitting in the bus. Could one of those seven other passengers be a kangaroo in the disguise of a man? Or was the driver who controlled the movement of the bus was one of them, heading us straight towards his kangaroo paradise?
The world surely could be uninteresting without invisible kangaroos flying around or disguised around mankind’s domain.
The invisible cross-eyed kangaroo continued to sit by my side probably wanting to know how much I already know about kangaroo-ism.
The disguised kangaroo driver continued through, heading towards the kangaroo paradise. Perhaps we were already there!!!
!!!
-
Tito Rajarshi Mukhopadhyay
To Whom It May Concern,
I am writing to you because I have written a book on a heart-felt topic – brain injury. I am trying to let more people know about my book. I amwondering if you would be willing to put my book and link to my website in your library/on your website or put an article in your newsletter. Enclosed is a media kit regarding my book, Gray Matters; it is unique in that I give my readers the feel of what it is like to walk in the shoes of a brain injury survivor (as I, myself, am a survivor). My point of view of course comes from the experiential perspective and it also presents a professional understanding as to what brain injury entails.
People need a clue as to what such an injury is about, because there is an overriding lack of awareness on the topic of brain injury. This needs to be rectified. The International Brain Injury Association says that it is the leading cause of death and disability worldwide. More than 2% of the US population has sustained a traumatic brain injury (TBI) and 1.4 million people sustain a TBI each year. Twenty to thirty percent of soldiers returning from Iraq have sustained a Traumatic Brain Injury! Truth is, on top of these statistics, many have been undiagnosed – “Oh, I just got my head rattled up”; I believe it is time that the public come to be aware of what brain injury entails, for many may be walking around with symptoms and not even be conscious of the cause.
Seventeen years ago I sustained a severe TBI. Years after my injury, I went back to school, pursued and acquired my Masters in Special Education specifically for brain injury rehab. I have now published a book that offers the opportunity for my readers to understand brain injury from the inside perspective. It helps survivors to be more aware of their injury and aids them in coping with their trauma and newly acquired challenges. At the same time, my intent is to increase public awareness. I present my subjective, experiential view and I also present a professional understanding about brain injury, hence leaving the reader with a non-clinical, personal awareness of brain injury.
You can link to my web page at http://www.graymatters4u.com to get a feel for my poetry and my brain injury services. My site is a great site for survivors as well as interested community members, as it includes various articles I’ve written about different aspects of rehabilitation, my research thesis – on the role of personal motivation in the rehabilitation from brain injury, support groups and more.
I am interested in networking about my book. I would like to get an article printed in your newsletter/magazine (if you have one) and perhaps have a link to my website. The last article in this email I wrote for the purpose of going in magazines or newsletters.
Thank you for considering the value of brain injury awareness,
Gray Matters!
Heidi Lerner M.A. Special Education
760 579 3895
heidi@graymatters4u.com
ebissociety.orgniagara.comtbi.pmr.vcu.eduHi Dr. Merzenich,
I am happy to hear that Ryan is doing well. He is a walking talking miracle indeed. I thank God for people like you who are willing to think outside the box. Let me tell you a little about myself.
My name is Craig J. Phillips. I am an alumnus of Oral Robert’s University Class of 1985, an alumnus of the University of Kentucky, graduate program in Rehabilitation Counseling Class of 1990, and a traumatic brain injury survivor. I sustained an open skull fracture with right frontal lobe damage and remained in a coma for 3 weeks at the age of 10 in August of 1967. I underwent brain and skull surgery after waking from the coma. Follow-up cognitive and psyche / social testing revealed that I would not be able to succeed academically beyond high school. In 1967 Neurological Rehabilitation was not available to me, so I had to teach myself how to walk, talk, read, write and speak in complete sentences. I completed high school on time and went on to obtain both my undergraduate and graduate degrees. For an in depth view of my process please read my post, http://secondchancetolive.wordpress.com/2007/02/18/my-journey-thus-far/
Through out my lifetime I developed strategies to overcome many obstacles and in so doing I have achieved far beyond all reasonable expectations. On February 6, 2007 at the encouragement of a friend I created Second Chance to Live. Second Chance to Live, which is located at http://secondchancetolive.wordpress.com presents topics in such a way to encourage, motivate and empower the reader to live life on life’s terms. I believe our circumstances are not meant to keep us down, but to build us up. As a traumatic brain injury survivor, I speak from my experience, strength and hope. As a professional, I provide information on a wide array of topics to encourage, motivate and empower both disabled and non-disabled individuals to not give up on their process. Please read my post, http://secondchancetolive.wordpress.com/2007/04/18/the-power-of-identification/ Second Chance to Live address’s a wide array of topics with practical and inspirational messages.
My interest is to provide hope to survivors and their families. Please encourage your readers to visit Second Chance to Live at http://secondchancetolive.wordpress.com and consider adding Second Chance to Live to your web site as a helpful resource.
Thank you for your time and kindness.
Have a simply phenomenal day!
Craig J. Phillips MRC, BA
Second Chance to LiveOur circumstances are not meant to keep us down, but to build us up!
Publications
Growth Point, social and therapeutic journal, Summer Edition 2007, Thrive, The Geoffrey Udall Centre, Beech Hill Reading RG7 2AT email info@thrive.org.uk
Brain Injury Association of Texas newsletter, Summer Edition 2007, Austin, Texas email info@biatx.org
In Touch, newsletter, Summer Edition 2007, Westminster, Colorado, email Elaine@ImAlreadyHome.com
The Brain Injury Handbook, Rehab UK, September 2007, 62a, Peach Street Wokingham Berkshire, RG40 1XH email ninahillier@rehabuk.org
Transformation Times, October and November issues. Transformation Times is a mini-magazine, serving men and women of the armed services and their families and is published by Operation Life Transformed. My articles are listed under, Traumatic Brain Injury and Activities of Daily Living with in the mini-magazine. You can access the mini-magazine through http://lifetransformed.org/Documents/Oct_T_times_final_(3)1.pdf . Operation Life Transformed can be contacted through contactus@lifetransformed.org
European Brain Injury Society E.B.I.S. with in their Autumn 2007 Newsletter http://www.ebissociety.org/automn/newsletter-angl.htm in both French and English. Specifically, My Journey thus Far has been printed with in the newsletter.
Brain Injury Association of Niagara My article, Traumatic Brain Injury and Displaced Energy has been published by the, Newsletter January 2008 http://www.niagara.com/bian/
Virginia Commonwealth University’s Department of Physical Medicine & Rehabilitation Neuropsychology http://www.tbi.pmr.vcu.edu/ My Journey thus Far, TBI Today Volume 6 Issue I — winter 2008 issue News, Ideas and Resources from the Virginia TBI Model System
As of February 21 Second Chance to Live started being visited and read by the Department of Veteran’s Administration from locations through out the United States.
I am available for speaking engagements, conferences and seminars. My message is to motivate, encourage and empower people with and with out disabilities to consider the possibilities. My diverse background in nursing, emergency medicine, physical education, theology, counseling and with in both the funeral and cemetery industries equip my ability to speak to a wide range of topics as they relate to living life on life’s terms. Second Chance to Live incorporates my experience, strength and hope.
As a traumatic brain injury survivor and a master’s level rehabilitation counselor who has lived with an invisible disability for over 40 years I bring a fresh and unique perspective to any audience.
I believe that our circumstances are not meant to keep us down, but they are meant to build us up. I believe our circumstances provide the learning environment that teaches you and I lessons. As we learn from those lessons we gain experience. Our experiences prepare you and I to take advantage of the opportunities that become available to us. I believe those opportunities point us in the direction of our destinies.