ADD / ADHD, Dyslexia, Web/Tech

Dyslexia and ADHD Forums and Communities

If you are looking to chat to other people with dyslexia or ADHD then you can do worse than these sites.

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  1. QUEST FOR TRUTH

    I was diagnosed with dyslexia 20 years ago when I was 27 years old by a Doctor specializing in dyslexia in New York.
    – Today, dyslexia can also be referred to as ADHD.
    – 20 years ago, I used Cylert which was the most effective drug ever prescribed. Unfortunately, Cylert was taken off the market due to potential issues/problems to the liver. I never had any problems which were confirmed by the blood test taken every 6 months. Ralph Nader and his Public Citizen group claimed credit for petitioning the FDA for the drugs removal.
    – Conducting research to see if Cylert is used outside of the United States and if so, then I am sure that the countries that are using this drug have valuable research to prove its’ value in terms of how it helps people deal with specific disorders.

    – Then, I used the prescription Dexedrine (GlaxoSmithKline) Brand Name for 15 years and never had any problems. Took 20mg daily and never had to increase or decrease the dosage. Continued the blood tests every 6 months and never a problem, but it was also taken off the market. Cylert and Dexedrine provided clarity of thought, ability to process information/cognition/comprehension/analytical ability, clarity of vision, ability to organize and ability to articulate clearly what I was thinking or feeling.

    – Previous to putting a name to this disorder, I knew something was wrong because I am an intelligent human being, but was treated by others as if I was stupid. Friends said that when they looked into my eyes it seems that I was not there or not listening or acting brainless even though I was doing everything that I could to focus on what was going on at the time. I went to hundred’s of doctors and so-called specialists but they could not find anything wrong and had no suggestions on what steps to take to find out what was wrong and some suggested that nothing was wrong.

    – I overcompensated in every aspect of my life to make up for the areas where I was having issues/problems such as reading, writing, comprehension, ability to remember, ability to understand, thought processes, informational recall, all forms of cognitive functions/abilities, etc. It was not that I could not read, but learned how to speed read because it was difficult to focus on one word or several or groups of words. I overcompensated by outlining all information that I read, then I tape recorded it, then I listened to the tape recording over and over again until I knew the information frontwards, backwards and sideways. Overcompensating was extremely exhausting and I knew that I needed additional help and was bound and determined to find it. Unfortunately, my parents ignored by request for help, so I was on my own and in search for an answer.
    – I thank God for finding the doctor that put a name to the disorder and provide a prescription drug to help me deal with it. Now I pray to God to help me find ways to get people to stand up to the pharmaceutical companies and the FDA (Government) in regard to re-establishing the Brand Name drugs that actual work for a particular disorder such as Brand Name Dexedrine and Cylert.
    -The Millions and Millions of individuals with ADHD and dyslexia and/or similar disorders need to become very visible. We need to make noise about what we need and want because there is “Power in Numbers.” How many people in the Senate/Congress/Legislature/Supreme Court have this disorder and are afraid to stand up and be recognized? It is a known fact the majority of people suffering with this disorder are above average intelligence. So, I say let’s put our brains together to achieve something that all of us can benefit from while making the world a better place to live.

    – The original Brand Name Dexedrine was produced and sold until it was available to market in a Generic Form so GlaxoSmithKline stopped making it because they were not going to make all the Millions and Billions that they used to make on this drug. On the other side of this spectrum, millions of people requiring this “specific drug” are continuing to suffer as a result of GlaxoSmithKline’s financial decision.
    – The pharmaceutical companies have put in tons of so-called “fillers” into the generic form of drugs which seems to have destroyed the true and actual chemical composition of the drug. Generics provide a slightly lower priced drug that continues to bring in Millions and Billions of dollars in revenue to the pharmaceutical companies. Unfortunately, the generic does not work for millions of people, but they keep taking it in hopes that it might work, but it never does works.
    – In regard to generics, I tried every generic form of drug for ADHD and/or drugs for dyslexia on the market and NOT ONE of them worked. NOT ONE of them took away the feeling of living/functioning in a cloudy haze which made it difficult to think, understand, comprehend, analyze, organize, communicate, etc. Cylert and Dexedrine are the only drugs that help to correct my disorder.

    – It is also my understanding that the FDA also wanted the original Brand Name Dexedrine off the market due to drug abusers who were abusing the drug. Anyhow, GlaxoSmithKline created a time released form that was supposedly the same as the original name brand Dexedrine but in a time released form to make it difficult for the drug abuser to abuse it. Well excuse me, but the druggies so-to-speak are intelligent and desperate type of people and desperate people will find creative ways to take a time released capsule and recreate and formulate it into their favorite illegal drug of choice “Meth.” As a result, millions and millions of people who responded very well to the original Brand Name Dexedrine and quite willing to pay the extra price for a quality product that actually works are now forced to pay out additional money to purchase inferior ineffective products such as Dexedrine spansules and generic drugs that do not work.

    – The dilemma continues because the intelligent, creative and desperate druggies have probably been able to take a non-stimulant drug used for ADHD and dyslexia and change something minor in the chemical makeup to create another meth drug. So, in effect, the non-stimulant drug market will also be shut down by the FDA and again Millions of people who might actually respond to the Generic “FILLERS” will also suffer by being forced into a non-functional type of behavior and the healthcare companies will be happy because their business will vastly increase from Millions to Billions of dollars in revenue just to take care of all the non-functional people all thanks to the druggies and FDA.

    – GlaxoSmithKline created a Dexedrine spansules that is supposed to be the same as the original Brand Name Dexedrine, but in a time released form. I called GlaxoSmithKline and explained to them that something was wrong because within six (6) months or less, I noticed that the drug stopped working. If it was the same as the original, then it should work and function as the original and I should be able to take it and not have to increase it or decrease it or stop taking it because it does not work. I took the original Dexedrine for 15 years and never had a problem and now I have a problem with GlaxoSmithKline and their inferior spansules product. GlaxoSmithKline suggested that I was the reason that it did not work and this infuriated me beyond infuriation because if it happened to me then I know that it is happening to many others also. To further my point about their inferior product, I went to the doctor’s to discuss Dexedrine Spansules inability to work and Lord and behold another patient came in to talk to the same doctor about the Dexedrine Spansules and how they are no longer working. She started to take them the same time that I started to take them and the drug stopped working around the same time/same month that they also stopped working for me. Then another person spoke up about the same situation. So, it seems that something was changed in the spansules because it is not the same. How many other people have used this drug and suddenly within the last six months it no longer works? How far down a dark hole can GlaxoSmithKline go to hide before they admit that they changed something in this drug?

    – I also asked GlaxoSmithKline how does anyone know about the process of filling a complaint about superior or inferior products if no one has ever been told about the process nor read about it nor able to read such small print nor informed in any way shape or form about the complaint process nor have I heard of any doctor reinforcing patients to contact pharmaceutical companies and how to contact them nor have I ever heard anything about such a process on TV nor News Reports, nor interviews with doctors nor with any healthcare providers nor read anything in any newspapers or magazines about a reporting process? Their response was that the information is in the pamphlet with the prescription. I then asked GlaxoSmithKline how they can keep accurate records on what products work and what products don’t work if no one really knows that there is a formal procedure to follow? Again, they suggested that the person should read the information provided with the prescription. Again, I ask them if they meant the information that was printed in the smallest of smallest font that no one could read. They continually repeated that that this information was the information provided with the medication and they can call to file a complaint.

    – I told GlaxoSmithKline that there are millions of people are out there suffering due to inferior products such as Dexedrine spansules and generics and as a result, they have no idea nor clue about how or where to file a formal complaint? And, because the medication is not working, they are most likely not able to function normally, unable to communication effectively, unable to think, unable to comprehend, unable to follow directions, unable to create action and unable to voice an opinion. So, I ask GlaxoSmithKline how are they going to collect this important and vital data and information that will reinforce that this product in ineffective and inferior? I also asked them how could they collect actual data if they have not established an effective global communication process and formal complaint process with systematic standard formal guidelines so that everyone is aware of the process in addition to and reinforcing the procedure so that everyone will know how to assist someone who needs help to communicate to the pharmaceutical companies that a drug does not work. Again, the so-called expert repeated that this information was the information provided with the medication and they can call to file a complaint. I then stated that if GlaxoSmithKline had the complete actual/data/results then they would still be manufacturing the original Brand Name Dexedrine and the millions of people who need it will pay for it rather than waste their money on a similar product or generic product that does not work. Their response suggested to me that they wash their hands of any responsibility.

    – This exhaustive process also makes me wonder why it seems like they do not want a standardized systematic formal process to obtain factual/actual data? How many other people have asked the same questions and received the same response from this or other pharmaceutical companies? What other steps have you taken to create awareness? What other potential steps can be taken to force the pharmaceutical companies to create “One Global United Process” to be used to collect actual vital data. And, wouldn’t you like to see what they did with the data, how the analyzed and presented the data to FDA? If I provide information, then I should have access to the results. We are all aware of HIPPA and I have no interest in seeing anyone’s personal information. I want to see how many calls came in on a specific drug and how many had successful results and how many believed it was an inferior ineffective drug. If there is not a large response about a drug then the pharmaceutical companies are not doing what they should be doing to obtain all the data. What information do they provide to the FDA? Understanding and how to work with and deal with the FDA is another complex situation in itself.

    – My conversation with the Pharmaceutical Company seems to suggest that they believe that they are not responsible for communicating information in numerous and various forms of communications/media other than in information provided in extremely small print. My impression is that they believe that are only responsible if someone figures out the process by enlarging the print on the extremely tiny font used to explain about the drug and complaint process or if someone takes responsibility, asks questions, makes phone calls to ask more questions and continues to ask questions to understand if a process is in place and then calls the company to file a complaint.

    – My discussion with GlaxoSmithKline continued to go downhill because they suggested that if anyone calls to file a complaint, then an expert records the information which will be sent to the FDA and the FDA will keep a record of the complaint. GlaxoSmithKline could not explain what the FDA does with the information. From the sounds of it, one could assume that the FDA stores this information in a big black hole for all eternity just sitting there rotting. If the FDA could conduct an analysis of everyone and I mean everyone treated with actual Brand Name Cylert and Dexedrine (not the time released capsules and not generic), then the FDA would re-activate the prescription medication/drug for use resulting in millions and millions of productive tax paying citizens who would have even greater potential to make the world a better place to live.
    Unfortunately, they cannot do so because they are only provided bits and pieces of parse data collected from a minor portion of the population which is provided by the pharmaceutical companies who do not have any type of standardized systematic formal process to collect data nor do they have an effective and efficient communication process to let everyone know about their process nor do they create awareness that something does exist.

    – Has anyone thought about or tried to implement one (1) global process that would be communicated throughout all forms of media throughout the whole world whereby every human being would be trained on a standardized systematic formal process so that all actual data can be collected and analyzed in order to determined actual/factual successes and/or failures of any drug or medical procedure. Information can be communicated to everyone on a global basis via all forms of media which includes but not limited to: Reports in medical magazines and/or in any magazine and/or ads in medical or in all types magazines explaining and reinforcing the formal process, brochures, Internet WEB Sites, Television news reports, Local, Regional, National, International Newspapers, billboards, flyers, reinforcement by all doctors to call the pharmaceutical company, someone at the doctors office to ask each patient and for the doctors office to immediately send the information to a specific pharmaceutical web site or pharmaceutical email address to communication the drugs effectiveness or ineffectiveness for each prescription used by a patient.

    Instead, we have some type of a system that is not unknown to millions. How can Pharmaceutical Companies provide any type of valid data and/or analysis when only bits and pieces of parse data is collected from a minor portion of the population.

    END RESULT
    • As a result of reading this information, you can no longer say that you did not know what was going on, You can no longer say that you were unaware that there was some type of method available to make your voice heard and to identify if a particular prescription drug(s) works or does not work.
    • You are now aware that there is some type of process available to file a complaint about inferior/ineffective drugs. It is not the best process or method, but it is better than nothing for the time being.
    • Make your voice heard and make your voice count and call in about every successful and every ineffective/inferior prescription drug.
    • If you want a certain brand name drug reinstated then speak up and tell them what you want reinstated. I had my response written out before my conversation with them because I figured that they would ask for it. I was direct and to the point and they know that I meant was I said. I told them that I wanted the original Name Brand Dexedrine Drug reinstated and how the other drugs were inferior and ineffective.
    • Ask the pharmaceutical so-called expert every question that I asked as noted above and ask them additional questions. Highlight the questions before hand so you will have them ready.
    • Do not let them suggest that it is your fault the drug is not working. Tell them that they are wrong. If they challenge you, then challenge them right back.

    • Every pharmaceutical company has a toll free phone number listed on their web site.
    o or call 1-800-555-1212 and ask for the company’s toll free phone number or go to the library and ask for assistance to find the information
    o or call the library and ask for assistance to provide you with the phone number
    o or call your doctor and ask for the particular pharmaceutical company’s toll free phone number.
    o If you send the pharmaceutical company an email, then make a copy and date it and go to the sent file and print out the email so that you will have information on the day and time the email was sent to use for future reference.
    o If you do not hear anything as a result of the email then email them again and again and again and call them also.
    o Keep asking questions until you get a clear concise answer and then ask them more questions. toll free number and do not stop asking until you get the phone number and make the call.
    ________________________________________________________________________

  2. Joseph J. Patrizzi

    I was wondering if anyone knows if there are any Government aid programs or financial assistance for people with Dyslexia? Any info would be much ablijed.

  3. Three sensory-cognitive processing factors underlie language and literacy skills. Concept Imagery-the ability to image gestalts-is critical to cognition. Phonemic Awareness-the ability to perceive the number, order and identity of sounds within words-is critical for reading and spelling. Symbol Imagery-the ability to visualise letters within sight words-is critical for phonemic awareness, spelling and contextual reading fluency. Comprehension and critical thinking require ability to “dual code” information-in mental images and language. Some individuals have weakness in concept imagery and do not image “gestalts” for language.

    They retain only details or parts of information and struggle with higher order thinking skills. These individuals are often diagnosed as Hyperlexic, mildly Autistic or with Asperger’s Syndrome. In addition, inaccurate reading prevents or disrupts imagery. Accurate decoding requires phonemic awareness, which is implicated as the most pervasive cause of decoding and spelling problems, including those severe enough to be labelled “dyslexia”.

    For decoding and spelling skills to become fluid, phonemic awareness must cross a threshold to visual imagery for letters and sight words-symbol imagery. When this function is weak, individuals spell phonetically and have low reading rates and word recognition skills. Diagnosing and stimulating these three sensory-cognitive functions is critical to language and literacy development. Lindamood-Bell®programs are made up of a series of specific practices, each targeting these essential skills that are critical to the reading process.

    For more information visit : http://www.lindamoodbell.com/

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