Tuesday, November 23, 2010
Sunday, November 21, 2010
Wednesday, November 10, 2010
Wednesday, November 3, 2010
Friday, October 29, 2010
Wednesday, October 27, 2010
Saturday, October 23, 2010
Friday, October 22, 2010
Saturday, October 2, 2010
Tuesday, September 28, 2010
Monday, September 27, 2010
Saturday, August 7, 2010
Tuesday, August 3, 2010
See story, "Dystonia Stealing Career From Young Photographer" at:
Tuesday, July 27, 2010
Thursday, July 22, 2010
Thursday, July 15, 2010
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.
Wednesday, July 14, 2010
Information about The Dystonia Coalition:
Tuesday, July 13, 2010
Friday, July 9, 2010
Friday, July 2, 2010
The following is a fact sheet about Dystonia:
Thursday, July 1, 2010
Thursday, June 10, 2010
Friday, May 28, 2010
Friday, April 9, 2010
Thursday, April 1, 2010
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:
Saturday, March 13, 2010
Friday, March 12, 2010
Tuesday, March 9, 2010
For more information, read the following: http://www.medicalnewstoday.com/articles/181565.php
Tuesday, February 23, 2010
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:
Wednesday, February 10, 2010
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.
Sunday, February 7, 2010
Some words of wisdom from The Dalai Lama:
Friday, February 5, 2010
Sunday, January 31, 2010
Friday, January 29, 2010
Read about it at :
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
Saturday, January 23, 2010
Friday, January 22, 2010
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:
Thursday, January 14, 2010
Tuesday, January 12, 2010
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.
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.
Monday, January 11, 2010
Sunday, January 10, 2010
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
Saturday, January 9, 2010
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.
Thursday, January 7, 2010
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:
(link to past episodes)
Wednesday, January 6, 2010
Tuesday, January 5, 2010
Sunday, January 3, 2010
Friday, January 1, 2010