Dystonia Educational Forum

This webpage is a  link up with an interactive online learning site about dystonia for patients and theirfamilies. It presently is located here. NEW POSTS UPDATED WEEKLY !

”Life has a habit of throwing us curve balls. It’s what you decide to do with those curve balls that make the difference.“

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Recognizing that many individuals with dystonia, their families and friends need a central clearinghouse for information, updates and news about this rare disorder.  C4D has taken the step to partner up with WEGOHealth to offer this unique online Educational Forum for dystonia. Moderators of the Forum are licensed healthcare practitioners educated in such topics as diagnosis, pain management, nutrition, botulinum toxin therapy, DBS and more. Our goal in creating this forum is to allow an open, uncensored but moderated BB that covers various topics pertaining to dystonia diagnosis, treatments and especially the aspects of care, education, and awareness of this rare disorder.

To maintain consistency, try to keep your post related to the main post (i.e. Research Updates, etc.) You will find an immense amount of information on this forum. It is NOT intended to be a social network, but one that promotes and delivers correct dystonia education to those  afflicted with the disorder. Do not be overwhelmed by all the information, you will learn new and old information. Some of the information you see cannot be overemphasized and will sound repetitious. Take time in reading the posts. As time goes on, C4D will obtain guest moderators to help answer your questions!

We hope you will join us, along with WegoHealth, in participating in this new dynamic Educational Forum that is meant to serve you, the patient, friend, colleague, and survivor of dystonia. We now have Noel Valeros, Founder and CEO of the American Dystonia Society, helping Ellen S. and myself in moderating the over 280+ members of the forum.

This Forum is dedicated to the following people:

Richard Duggan, Teresa Duffy, WendyRomano, Russ Badger

Deb Holton, Esq. who helped me, personally, to set the precedence and move forward with dystonia and Care4Dystonia, Inc. by telling me to “JUST DO IT!“


Dystonia 101

  • Brain Basics
    • Understand how your brain, nerves, and muscles work
    • Neurotransmitters and their role
    • Basic info about movement disorders

 

  •  What is Dystonia?
    • Dystonia defined
    • Redefining dystonia
    • Types of dystonias
      • Primary dystonias
      • MyoClonus
      • Myoclonic dystonia
      • Secondary dystonias
      • Genetic forms of dystonia ( DYT1 )
      • Rare dystonias
      • Other related dystonia disorders
        • Mitochondrial disorders
        • Dystonia storms
        • Cervical dystonia
        • OMD
        • Blepharospasm
        • Dopamine responsive dystonia

 

  •  Causes of Dystonia
    • Genetics
      • DYT1 genetics


    • Medications for dystonia
      • Avoidable meds

       

    • Idiopathic
    • Trauma
    • Your theories


  • Signs & Symptoms of Dystonia
    • Pain
    • Which is worse? Pain or twisting spasms?
    • Stress and stressors control
    • I’m new to….
    • Help - what do I do….
    • Hot tips and advice…
    • Advice to the newly-diagnosed
    • 15 year old asking for advice…
    • Dear dystonia letters
    • Ending it all - a tough conversation

 

  • Health Tests
    • Explore a widerange of what tests to expect during the diagnosis phase of
      dystonia
    • DRD and BH4 testing
    • To Rule in and Diagnose Dystonia

 

  • About ”Misdiagnosis”
    • Why does it occur? Redefining dystonia
    • Risk assessment tool for CD - Risk Factors
    • What Stage are you in?
    • Type A vs Type B personalities
    • Coping with dystonia
    • The emotional impact of dystonia
    • Your feelings about dystonia
    • Excessive sleeping
    • Eating disorders and dystonia
    • Weight control
    • Calorie burning
    • Thyroid disease and dystonia
    • The fibromyalgia connection

 

  • Treatment Phases
    • Overview
    • Massage
    • Rolfing
    • Teas - Salanga Ob.


  • Oral Medications


  • Botulinum Toxins
    • Botox
    • 1st time Botox questions


  • Surgical Interventions
    • Ablation
    • Selective denervation
    • Intrathecal baclofen

 

  • Deep
    Brain Stimulation

    • Beka’s story with DBS


  • Pain Management

 

  • Additional Adjunctive Therapies
    • Physical therapy
    • Alcohol use
    • Alternative options
      • Overview
      • Herbs and vitamin use

 

  • Your Treatment Team
    • Members of your team
    • Your role as a patient
    • Hospital experiences to dystonia
    • Physician reactions to dystonia
    • Dating, spouses and more
    • Childrens’ reactions to dystonia
    • How to tell others how to “get it” with dystonia
    • Physician time with you
    • What makes a good MDS physician?
    • DeStigmatizing Dystonia
    • Dear Dystonia Letters

 

  • Resources - Help
    • Employment issues
    • The disability process
    • ADA amendments


  • Research Updates
    • Your events, meetings, news
    • Dystonia research library - articles

 

  • Glossary

 

  • Other Hot Topics
    • What is awareness actually?
    • Collaboration among the dystonia nonprofits
    • What do we really want - a cure?
    • Hot tips to help you handle dystonia
    • Help….pain
    • Is a Cure being held back?
    • Orphan drugs and diseases
    • Off the cuff - election 2008 news
    • Gluten free diets
    • Dystonia tics
    • Emotional reactions to dystonia
    • Headaches and dystonia
    • Hand spasms
    • Focal hand tremors
    • Faith and spirutuality
    • Spinal cord stimulators
    • Burning toes
    • Reflex pain complex
    • In memory of others
    • Scalp pain
    • Mild dystonia - ST
    • Anyone taking Depakote?
    • Amantadine info
    • Question about dystonia
    • How does it start?


Dystonia 201

 

 

 

The above underlined topics are already being discussed, debated, and questioned on our Education Forum. Join the Forum and begin your own conversation today! We already have over 284 members. Become member ”285!” There are well over 45 pages of web discussion with many educational posts with article links containing more than 65 readable responses to read. So there is plenty for you to learn on this unique Forum. You just might find your question posted and answered on this unique dystonia forum! This is the only online forum that is moderated by an actively practicing healthcare provider along with other health activists.

Always Expect an Educated Answer from C4D !

Copyright C4D, 2009-10