Talk Show Host Wendy Williams Has Grave's Disease

Kudos to talk show host Wendy Williams for sharing that she has Grave's Disease. Williams appeared on The Doctors, yesterday.

Theraband Exercises for Cervical Dystonia

Theraband Exercises for Cervical Dystonia:
http://www.livestrong.com/article/311839-theraband-exercises-for-cervical-dystonia/

Great Tips from the Dystonia Medical Research Foundation

Great tips from the Dystonia Medical Research Foundation:
http://dmrfenews.blogspot.com/2010/11/dmrf-enews-november-2010.html

How to Be a Friend When Your Friend is Chronically Ill...

I have written How to Be a Friend When Your Friend is Chronically Ill. View the article at:

http://vonneb.wordpress.com/2010/11/03/how-to-be-a-friend-when-your-friend-is-chronically-ill/

DMFR Member Educates Continental Employees About Dystonia

Education about Dystonia:

http://www.dystonia-foundation.org/pages/dmrf_member_educates_continental_airlines_employees/506.php

Teen Who Has Dystonia Raises $300,000.00 For The Cause!

View article about a teen who has raised money for Dystonia research:

http://www.courier-journal.com/article/20101027/ZONE04/310270022

Vote, Vote, Vote

Please get out and vote on Nov. 2. This is a very important election which could affect things like Healthcare Reform, etc. So, please let your voice be heard...

Movement Disorders: Cleveland Clinic Is Hosting An Online Chat

Cleveland Clinic Online Health Chat for Movement Disorders on Friday, October 29, 2010. For more information, visit:

http://www.clevelandclinic.org/health/chatreg/ChatPage.aspx?ChatId=1130

Michael J. Fox on Parkinson's and Life

Michael J. Fox on Parkinson's and Life with CNN's Dr. Sanjay Gupta:


http://pagingdrgupta.blogs.cnn.com/2010/09/29/michael-j-fox-on-parkisons-and-life/#comment-82766

Minneapolis Woman With Debilitating Movement Disorder To Compete In Twin Cities Marathon

Women with Dystonia Competes in Twin Cities Marathon:

http://www.i-newswire.com/minneapolis-woman-with-debilitating/62488

Jake's Ride

A child (Jake) has DBS surgery to treat Dystonia...

http://www.cbsnews.com/video/watch/?id=6901023n

(Note: The intro advertisement is a bit choppy, but it smooths out nicely...be patient)

National Geographic: A Man Afflicted With Dystonia

Correlation Between Dystonia and Parkinson's Disease

The DMRF launches two new fundraising programs.

The Dystonia Medical Research Foundation launches two new fundraising programs, Dogs4Dystonia and Dystance4Dystonia. For more details, view:

http://dmrfenews.blogspot.com/2010/08/dmrf-enews-july-2010.html

"Dystonia Stealing Career From Young Photographer"

See story, "Dystonia Stealing Career From Young Photographer" at:

http://www.webcastr.com/videos/news/rare-disease-dystonia-stealing-career-from-young-photographer.html

The Today Show discusses 20 years of ADA (Americans With Disabilities Act)

The Today Show discusses 20 years of ADA:


http://today.msnbc.msn.com/id/26184891/vp/38411331#38411331

Dystonia Survey

Share your experiences with Dystonia. The survey link can be found at:

http://www.surveymonkey.com/s/LZSJTVF

Any insight into The ST Recovery Clinic?

I believe that I have asked this question before. I'm not sure who is reading this blog (Hopefully, a few people...). But, my question is for anyone (with Cervical Dystonia) who has worked with The ST Recovery Clinic, under the guidance of Abby Brown.

I know the program does not claim to offer a cure for the disorder. But, I was wondering if anyone can attest to the program having worked to make the symptoms of CD easier to deal with. I would love to talk with someone who has tried the program.

As, it is expensive. But, I've gone through physical therapy which is also expensive. Due to no fault of the PTs, treatment is sort of a guessing game, to a large extent. My last PT apologized for not being able to help me more. He did his best. It's just the nature of the beast...

So, if anyone has been a "pateint" under The ST Recovery Clinic and has any feedback, please share with me. I think many of us who are suffering with the discomfort and pain of this disorder would appreciate it.

Thank you

The Dystonia Coalition

Information about The Dystonia Coalition:

http://www.movementdisorders.org/monthly_edition/2010/04/dystonia_coalition.php

The American Dystonia Society

The American Dystonia Society seems to be making a strong effort to educate people about Dystonia. Their efforts to raise funds for Dystonia research appear to be very impressive as well. View info about The American Dystonia Society at:


http://www.dystoniasociety.org/

Dawn Brinkley to Promote Dystonia Awareness at Mrs. United States Pageant

Dawn Brinkley to Promote Dystonia Awareness at Upcoming Mrs. United States Pageant:


http://www.i-newswire.com/dawn-brinkley-to-promote-dystonia/47375

Facts About Dystonia

The following is a fact sheet about Dystonia:

http://www.aans.org/en/Patient%20Information/Conditions%20and%20Treatments/Dystonia.aspx

Article About a Young Woman Who Has Dystonia

Through another blog that discusses living with Dystonia, I came across this interesting story about a young lady who has Dystonia:

http://newstranscript.gmnews.com/news/2006-06-07/Front_Page/Family_brings_awareness_to_struggle_with_dystonia.html

A Beauty Queen Who Has Cervical Dystonia

Mrs. Carolina is a patient advocate for those with Cervical Dystonia:

http://mrsnorthcarolinaunitedstates.com/Meet_Mrs.html

http://www.stdystonia.org/about/stories.cfm?id=61

National Geographic: Episode on Muscles discusses Dystonia as well as another disorder which affects muscles

http://channel.nationalgeographic.com/episode/muscles-4923/Overview#tab-Videos/08202_00

Article: Integrated functional network could explain some mysteries of parkinsons and dystonia

http://itisinteresting.me/2010/05/integrated-functional-network-could-explain-some-mysteries-of-parkinsons-and-dystonia/

Dystonia in the News: Dystonia on Good Morning America

Today is World Autism Day

Autism is one of those inexplicable neurological diseases--one day the afflicted child is fine and then it's like the lights go out on their personality, emotions, and overall functioning. This must be a devastating disorder to parents and families of children who have been stricken. My heart goes out to anyone and everyone who has been touched by Autism.

For more information, visit:

http://www.worldautismawarenessday.org/site/c.egLMI2ODKpF/b.3917065/

Lupus Advocacy Day

For information, visit the following blog:
http://www.lupusgirlgoesraw.com/2010/03/lupus-advocacy-day.html

Article: Coping With Ups and Downs of Thyroid Disease

http://www.dailynews.com/health/ci_14648718

Boy lost his mom due to lack of healthcare

http://

National Autoimmune Diseases Awareness Month

Senate Resolution 372 designates March "National Autoimmune Diseases Awareness Month." Hopefully this designation will bring much needed attention and awareness to these debilitating diseases.

For more information, read the following: http://www.medicalnewstoday.com/articles/181565.php

Story of a Young Man Who Has Dystonia

The following is an article that was published in the Mat-Su Valley Frontiersman about a young man who has Generalized Dystonia. View the article at:

http://www.frontiersman.com/articles/2010/02/22/valley_life/doc4b835a80199bb678637711.txt

Documentary: My Father, My Brother, and Me

In the latest edition of Neurology Now, there is an article featuring PBS Frontline's Dave Iverson. He discusses his struggle with Parkinson's Disease. He also discusses his documentary, My Father, My Brother, and Me. This documentary appeared on PBS last week. However I was able to watch the entire documentary at http://www.pbs.org/wgbh/pages/frontline/video/flv/generic.html?s=frol02p6c7&continuous=1.

Anyone who has Parkinson's Disease or knows anyone with the neurodegenerative disorder should view this documentary. In fact, anyone with any type of neurological and/or chronic disorder should view this documentary.

The documentary covers lots of territory in regards to Parkinson's Disease. The potential benefits of exercise in terms of possibly reducing the affects of Parkinson's are discussed in the film. In addition, stem cell research is also addressed.

All I can say is that this documentary is extremely informative as it sheds light on potential cures for this disease. It surely gives a sense of hope for patients who are suffering from Parkinson's Disease.

Stories of Others: "Walking My Path With Parkinson's"

I came across an interesting blog by a woman who has Parkinson's Disease. Her blog is called Walking My Path With Parkinson's.


http://marian-pathwalk.blogspot.com/2010/02/what-does-parkinsons-feel-likerevisited.html

The Dystonia Medical Research Foundation (DMRF) Updates

Updates from The Medical Research Foundation at:

http://dmrfenews.blogspot.com/2010/02/dmrf-enews-november-2009.html

Power of the Mind

Some words of wisdom from The Dalai Lama:

http://www.healyourlife.com/author-his-holiness-the-dalai-lama/2010/02/wisdom/inspiration/the-power-of-the-mind&utm_id=HYLFB

Mother's Fight to Help Her Son Who Has Dystonia

View story about a mother who fought to help her son who has Dystonia at:



http://www.wkyc.com/news/health/health_article.aspx?storyid=130193&catid=7

Dystonia Study: UAB to partner with Harvard Medical and Mt. Sinai on 5-year study

http://www.myfoxal.com/Global/story.asp?S=11902696

Let 'em Have it Janie!!!

Janie B., founder of Stop the Thyroid Madness, had a confrontation with a former Pharmaceutical Rep of Abbott Labs regarding Synthroid. Way to go Janie!



Read about it at :



http://www.stopthethyroidmadness.com/2010/01/24/guess-who-started-a-conversation-with-me/

What's Really in Our Food?

On a recent episode of The Oprah Winfrey Show, Oprah discussed the importance of eating "real food" with author Michael Pollan.

On the show, Pollan discussed how we are being harmed by the foods that are being sold in typical grocery stores. He also shed light on many horrifying practices that are taking place within the food industry. For example, animals are being given tons of antibiotics in order to make them bigger, not healthier. In turn, we [meat eaters] are eating the animals in the form of chicken and steak dinners. While the food often looks and tastes good, we are actually eating products that are helping to make people sick and/or fat.

Consumers have the power to help change the way that the food manufacturing industry is allowed to operate. As Pollan says, we have the power three times a day--breakfast, lunch, and dinner. Enough is enough. I agree that there needs to be a Food Revolution, because much of the stuff that we buy in the grocery store is junk filled crap (i.e. high fructose corn syrup).

At the end of the show, Oprah stated that the video, Food, Inc., can be ordered for $9.99 Friday--until midnight. Plus, there is also a free download of the movie if you order it. So, you can watch it immediately. In fact, I'm listening to the DVD as I am typing. It is very well done and so informative in that it exposes so much. I also ordered Food Rules: An Eater's Manual by Michael Pollan.

I am excited that conversations are being initiated in magazines, on T.V. shows, and amongst individuals about how we can improve our health by eating healthier, safer foods. We, as consumers, need to let it be known that we don't want harmful dyes or other harmful additives placed into our food any longer; research has shown that dyes can cause hyperactivity in children.

To order Food, Inc. visit https://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=Food+Inc.

To order Food Rules: An Eater's Manual by Michael Pollan, visit http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=Michael+Pollan

Update from the organization Care4dystonia

http://care4dystonia.org/

Blog repost from Livable Low Carb: Flour People Getting Twitchy

The following is a link to a blog post written by Dr. A at Livable Low Carb. Basically the article/blog is stating that just because the doctor TELLS you that you don't have Celiac Disease, it doesn't necessarily mean that you don't have a sensitivity or intolerance to foods that contain gluten. Regardless of the doctor's assessment, you know your body best. If after ingesting gluten, for example, you feel like crap, then your body just might have a problem when it comes to digesting gluten--regardless of a test or assessment by a doctor. The same applies to other foods as well. You may not have an allergy to a certain food, but you might have a food sensitivity which can also cause compounding health issues (i.e. bloating, swelling, constipation, etc.). View the blog post at:

http://comfort-eaters-diet.blogspot.com/2010/01/flour-people-getting-twitchy.html

The Second Beat Dystonia Advocacy Call Scheduled for Sunday, February 7, 2010

For more information, visit:

http://www.lifewithdystonia.com/2010/01/hello-tribe-another-call-scheduled.html

January is Thyroid Awareness Month

January is Thyroid Awareness Month. Visit the following link for more information about Thyroid Disease/Disorders:

http://www.thyroidawarenessmonth.com/

Thyroid Patient Community Call on Thursday, January 14, 2010

The following was taken directly from http://www.stopthethyroidmadness.com/2010/01/11/dr-lowe-wants-to-talk-to-you/ :



On the heels of an informative and wonderful THYROID PATIENT COMMUNITY CALL on Talkshoe last week with Dr. John C. Lowe (see posts below), we’re going to do it again this coming Thursday, January 14th. Join us for Part 2!


Dr. Lowe is a fibromyalgia, thyroid, and metabolism researcher who has always been such a champion for better diagnosis and treatment in thyroid patients. He is Editor-in-Chief of the open access journal http://www.thyroidscience.com/ as well as his own http://www.drlowe.com/.

Visit http://www.stopthethyroidmadness.com/2010/01/11/dr-lowe-wants-to-talk-to-you/ for more info on how to be a part of the community call.

Thyroid Disorders: why don't T4 only meds work for everyone?

I happened to stumble upon http://www.iwantmyt3.com/t3-test-questions.htm. On this site, Dr. Bouc discusses Thyroid disorders and why T4 only meds (i.e. Synthroid and Levoxyl) are not effective for everyone.

As a visual learner, I like that he uses repetition and drawings to relay the info. His diagram helped to further explain and help me to understand the reasons why T4 meds are not always effective.

I especially like the part where Dr. Bouc says, "Just telling someone that their Thyroid is normal based on a their TSH level being normal is insanity. You should tell that doctor to have some Prozac." I'd love to say that to quite a few of my doctors--past and present.

It was easier for docs to push antidepressants down my throat versus listening to my numerous complaints that it was possibly my medication (T4 only or Synthetic Thyroid Hormone) that was causing the problem. Gee, isn't it interesting that I can function without an antidepressant now that I'm taking Natural Thyroid Hormone instead of Synthetic Thyroid Hormone.

I just hope that those who have been suffering on T4 only meds will realize that there are alternative treatment options that might work for them. Searching the Internet and becoming a part of a knowledge based group is a great start.

Article: Ups and Downs of Thyroid Disease

View the article, Ups and Downs of Thyroid Disease at:

http://www.mercurynews.com/bay-area-living/ci_14150353

Unfair Treatment of Thyroid Patients; We Need Help!

I will be consistently reblogging this post, because it is important that feedback is received by as many resources as possible...

(Excuse the paragraph breaks;copy and paste aren't working so well for me)

Unfair Treatment of Thyroid Patients; We Need Help!

Out of frustration and concern:

I am trying to figure out how to help in exposing the unfair practices that are taking place in the treatment of patients who suffer from Thyroid disorders in hopes that these inadequate medical practices will change at some point.

Common complaints of patients who are receiving Thyroid Replacement Hormone due to a thyroid disorder are: not being adequately medicated, receiving very limited medication options although there are alternative methods for those who cannot tolerate the meds that are being pushed by a large pharmaceutical company, and being consistently ignored/dismissed by doctors when trying to receive help for lingering symptoms and complications.

Many people need Thyroid Replacement Hormone to stay alive. Current treatment is often unacceptable and must change on all levels including how doctors are being educated about Thyroid disorders and Autoimmune disorders that have led to Thyroid disorders.

I am a member of several well-run online groups which offer great advice and suggestions. We rely heavily on one another because of the lack of proper medical guidance by many doctors. Within these groups, ideas have been bounced around. I know that members have tirelessly written to Congress people, media outlets, The FDA, Endocrinological Organizations, etc. Also, there has been talk of marching in Washington and filing class action lawsuits.

However, this story has not received mainstream attention. No, this situation doesn't affect millions of people. But, there are many lives--at least thousands--that are being or have been negatively impacted by poor medical practices. More importantly, Big Pharma and politics in terms of health care affects everyone!

On the Internet, there are some wonderful groups including Stop the Thyroid Madness and Save Natural Thyroid. Both groups have a wide following. In addition, there are several other individuals and groups of people who are lost and searching for answers. All we want is to go into the doctor's office and have them take the time to see us as a patient and not a number.

Unfortunately, a routine office visit for a Thyroid patient usually goes like this: "Your TSH levels (numbers from a routine blood tests to measure Thyroid Stimulating Hormone) are fine." Then, a prescription for more pills--that make you feel lousy--are written and the doctor tells you they'll see you in a year. If you're lucky, they might listen while you complain about how poorly you're feeling. The "routine" is bitterly sad and it needs to stop. The treatment is unfair and unethical. I've written to a number of media outlets and haven't received a response.

Also, I just emailed an inquiry to 20/20 but the response mentioned that they only accept solicited ideas and items that have not been solicitited will be sent to the legal department. I'm not clear on what this means. I tried to find another contact address/email but can't find one. Does this mean that this particular show does not accept story ideas from outside sources? It doesn't make sense to me. But, if anyone knows what this means, please let me know.

Bottom line--we need help. We are not trying to cause problems. We just want to enjoy our lives. But when you're consistently being under medicated, over medicated, dismissed, and given inadequate treatment, it's a bit hard to enjoy life to its fullest.

So, if anyone has ideas, can offer services, or just wants to vent, please feel free to leave a comment. That includes everyone (lawyers, doctors, advocacy organizations, newspaper reporters, or anyone). All feedback will be greatly appreciated.

Thank you

My most current Tweets on Twitter

Simple Reflection: http://wp.me/pGoUb-3b 27 minutes ago
Worry, Frustration, and Gratitude: http://wp.me/pGoUb-31 about 18 hours ago
Unfair treatment of Thyroid Patients; We Need Help! Tell me what you think at http://chyvonneb.blogspot.com/ 1 day ago
A youngster with Grave's Disease: http://wp.me/pGoUb-2U 2 days ago
Appointment with the cardiologist: http://wp.me/pGoUb-2R 2 days ago

Unfair Treatment of Thyroid Patients; We Need Help!

Out of frustration and concern:

I am trying to figure out how to help in exposing the unfair practices that are taking place in the treatment of patients who suffer from Thyroid disorders in hopes that these inadequate medical practices will change at some point.

Common complaints of patients who are receiving Thyroid Replacement Hormone due to a thyroid disorder are: not being adequately medicated, receiving very limited medication options although there are alternative methods for those who cannot tolerate the meds that are being pushed by a large pharmaceutical company, and being consistently ignored/dismissed by doctors when trying to receive help for lingering symptoms and complications.

Many people need Thyroid Replacement Hormone to stay alive. Current treatment is often unacceptable and must change on all levels including how doctors are being educated about Thyroid disorders and Autoimmune disorders that have led to Thyroid disorders.

I am a member of several well-run online groups which offer great advice and suggestions. We rely heavily on one another because of the lack of proper medical guidance by many doctors.

Within these groups, ideas have been bounced around. I know that members have tirelessly written to Congress people, media outlets, The FDA, Endocrinological Organizations, etc. Also, there has been talk of marching in Washington and filing class action lawsuits.


However, this story has not received mainstream attention. No, this situation doesn't affect millions of people. But, there are many lives--at least thousands--that are being or have been negatively impacted by poor medical practices. More importantly, Big Pharma and politics in terms of health care affects everyone!

On the Internet, there are some wonderful groups including Stop the Thyroid Madness and Save Natural Thyroid. Both groups have a wide following. In addition, there are several other individuals and groups of people who are lost and searching for answers. All we want is to go into the doctor's office and have them take the time to see us as a patient and not a number.

Unfortunately, a routine office visit for a Thyroid patient usually goes like this: "Your TSH levels (numbers from a routine blood tests to measure Thyroid Stimulating Hormone) are fine." Then, a prescription for more pills--that make you feel lousy--are written and the doctor tells you they'll see you in a year. If you're lucky, they might listen while you complain about how poorly you're feeling. The "routine" is bitterly sad and it needs to stop. The treatment is unfair and unethical.



I've written to a number of media outlets and haven't received a response. Also, I just emailed an inquiry to 20/20 but the response mentioned that they only accept solicited ideas and items that have not been solicitited will be sent to the legal department. I'm not clear on what this means. I tried to find another contact address/email but can't find one. Does this mean that this particular show does not accept story ideas from outside sources? It doesn't make sense to me. But, if anyone knows what this means, please let me know.

Bottom line--we need help. We are not trying to cause problems. We just want to enjoy our lives. But when you're consistently being under medicated, over medicated, dismissed, and given inadequate treatment, it's a bit hard to enjoy life to its fullest.

So, if anyone has ideas, can offer services, or just wants to vent, please feel free to leave a comment. That includes everyone (lawyers, doctors, advocacy organizations, newspaper reporters, or anyone). All feedback will be greatly appreciated.

Thank you

Tips from Prevention Magazine: seven foods that shouldn't be eaten

http://www.aolhealth.com/healthy-living/longevity/foods-not-to-eat?icid=mainsearch4dl4link1http%3A%2F%2Fwww.aolhealth.com%2Fhealthy-living%2Flongevity%2Ffoods-not-to-eat

Stop The Thyroid Madness Live Chat Session

I am lovin' technology. If there was ever a time to be sick (bad joke, I know)...Let's just say I feel blessed to be living during the internet era. The internet has truly been beneficial in allowing me to connect with people who are in a similar boat.


Anyway, I was just on a phone/chat session--it lasted at least an hour and a half-- with Janie of Stop the Thyroid Madness and many other callers/listeners who have thyroid related issues (i.e. Hypothyroidism, etc.). Dr. Lowe was the featured guest. He is very knowledgable about the treatment of thyroid disorders. He acknowledged how big pharma is "in bed" with the doctors who are prescribing T4 only meds and how that plays into why patients with Thyroid disorders are often being inadequately treated and medicated. He also gave a wealth of information including info regarding hormones, nutrition, and supplements in relation to thyroid disorders.



Now, I just need to get connected to a group that talks about Grave's Disease, specifically. I have some resources but am not connected with any particular group which has a clear organizer/leader. If anyone has any suggestions, please let me know.



For more info about the above session, please visit:



http://www.stopthethyroidmadness.com/2010/01/04/dr-lowe-is-coming-to-our-party-listen-directly-or-ask-him-questions-one-on-one/

http://www.talkshoe.com/talkshoe/web/talkCast.jsp?masterId=62603&cmd=tc
(link to past episodes)

Winterizing the Thyroid

Mary Shomon's tips for "Winterizing the Thyroid":



http://thyroid.about.com/od/relatedconditions1/a/winterize.htm

Bauchmann-Strauss Dystonia Center of Excellence

New York City's Beth Israel Medical Center is the site of the nation's first ever Bachmann-Strauss Dystonia Center of Excellence:
http://www.dystonia-parkinson.org/index.cfm?fuseaction=home.viewPage&page_ID=5B99D3C4-7E90-9BD4-C155BF235DA7D7A3

An Autoimmune Disorder: Rheumatoid Arthritis

View a woman's story of living with Rheumatoid Arthritis:

http://www.aolhealth.com/condition-center/arthritis/rheumatoid-arthritis-erica-vorhauer?icid=mainsearch4dl3link3http%3A%2F%2Fwww.aolhealth.com%2Fcondition-center%2Farthritis%2Frheumatoid-arthritis-erica-vorhauer

Resources for Neurological Movement Disorders

Resources for people who have Neurological Movement Disorders:

http://www.spiritedmovement.org/images/1_min_guide_to_movement_disorders.pdf
(from: The Spirited Movement Foundation)

Putting a Face on Dystonia

Putting a face on Dystonia...Rogers Hartmann at TEDxSMU.



http://www.pegasusnews.com/news/2009/dec/17/tedxsmu-talk-rogers-hartmann/

The Beat Dystonia Advocacy Call-in

A big thanks to Rogers Hartmann and Renee Leverrier for hosting The Beat Dystonia Advocacy call-in session! It was very nice to talk with fellow Dystonians. I will discuss some of what we talked about in a later post.

Dystonia Conference Session

Dystonia advocate Rogers Hartmann has posted information about a call-in conference, hosted by Beat Dystonia, which will take place on January 3, 2009. For more information, please visit:
http://www.lifewithdystonia.com/2009/12/advocacy-conference-call.html.