Dystonia Neuro Movement Disorder

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Comment by greenie on September 23, 2009 at 12:50pm

I have recently found that accepting your new reality, who you are now, is easier for the person with DRD than it is for those around them. To have the response to my diagnosis by those who gave it to me, and those I gave it to (genetically) be "you're lying, you're a hypochondriac." is devastating. To have them say that my medical malpractice suit (my athletic shoe fitter knew what it was right away, but neurologists have never heard of it?) "two wrongs don't make a right," when I'm about to lose my house? Well, I didn't think there was any pain greater than a four year run with untreated DRD, but I just learned differently. Who knew? On an up note, I am making great headway on a business I have started. I think it will be successful, globally, I'm told. When it is, a free advertisement promoting understanding of movement disorders and dystonia will be included. That's been the blessing of the illness; I know that there is nothing, absolutely nothing, I can't survive or prevail upon. My greatest solace? A hug from God, which I allow myself every night. God knows it is true. My diagnosing neurologist knows it's true. And I do. That's all that matters.

Comment by Marie on September 22, 2009 at 10:59am

You may notice that content has been deleted from this area.

WEGO Health is a place for open, constructive interaction and we strive to maintain a positive community experience for all of our members, an experience focused on empowering one another as Health Activists, across all health conditions.

In response to recent comments within the Dystonia Group:

-We have banned members from the WEGO Health Community who posted content in violation of our Community Guidelines
-We have disabled Group Messaging functionality within the Dystonia Group
-We continue to monitor the group closely and will strictly enforce our Guidelines, particularly when it comes to content or conversation we feel does not respect the medically-minded tone of the WEGO Health Community, or distracts or disrupts from our mission of empowering Health Activists to help others.

We encourage all members to review WEGO Health’s Community Guidelines (http://www.wegohealth.com/community-guidelines) and
to continue sharing information, resources and support to empower one another.

Many thanks,
Marie

Marie Connelly
Community Manager, WEGO Health

Comment by Rogers Hartmann on September 22, 2009 at 10:26am

Regarding TED, they have been at full capacity for some time now. There is a 400 person waiting list, but it will be live online and it will air on television. You have to write four essays to be chosen as an audience member.

To get a feel for TED and why they have so many millions fans all over the world...go to www.TED.com

The LA Triathlon is coming up (Oct. 4th) and there are participants who are competing on behalf of Dystonia.

Comment by beka on September 22, 2009 at 10:02am

Information regarding the TED Conference : Go to http://www.tedxsmu.org/attend/ for more information being held in Dallas, Texas.

Comment by beka on September 20, 2009 at 12:41am

Enough about me - How are all of YOU DOING !

beka

Comment by Trudy on September 18, 2009 at 4:59pm

Beka,
Fearless...one of the many aspects of you that I admire and something you have fostered in me as well as so many others. Thank you for the tireless work you have done and continue to do for ALL of us living with Dystonia. I know I have said it to you before; you are our Foremother. In many ways it is because of what you have laid out before us; C4D, moderating WEGO Health, your writing, to name a few things...it is because of these things that many of us are able to find the strength within ourselves to keep moving on until we find the answers we need, the care we deserve and to never lose sight of the valuable person each and every one of us is. You are an invaluable asset and ally. I pray that with all you have endured this lawsuit will not drag on and will end in your favor.
Cheering you on from afar!
Trudy

Comment by Jenn on September 18, 2009 at 3:24pm

Beka.. awesome for taking on this battle!

I have friends who have told me their stories of being fired from work due to dystonia.. one sued her employer, but only won her job back.. she opted for disability and severence because the hostile work environment was not worth it... Another didnt even try.. because the symptoms were not worth the stress.

For someone of your stature in the dystonia world to take on this battle it will help those of us who arent able to fight against the discrimination that comes withy rare disorders. I wish you the greatest strength.. and thank you because even though this lawsuit is about you its for all of us!

Comment by Nancy Muller on September 18, 2009 at 4:08am

Talk about a mover and shaker, Beka, Way to go!!!!! Now that this has gone to press it's hard to say how much we can acoomplish thanks to you. I want to thank you for fighting for all of us. I've had similair issues in my field which is also medicine when I was working. Now this is AWARENESS!!!! We too often taken as not having problems and dytonia is just a word, but we all know that's not so. We suffer too in so many ways and we need to be recognized just as all the other more well know disorders are. My prayers are with you that you are able to make tremendous headway in the fight for ALL of us!!! Hey, I know your strength and I know a lot of other people do to. You have been an advocator forever and always for the people. I'm proud to be on your board and know I work with you for the right reasons. I too want to thank you for letting people know whats right and fair. Your a tough cookie Beka and we are all proud of you and all you've accomplished for our cause.

Comment by Lene on September 18, 2009 at 2:49am

Beka,
Hats off to you my friend for your courageous actions.I will pray that all goes well with this uphill battle. Please know you will be the victor!! It makes me proud to know you girl...Lene

Comment by Canary3 on September 18, 2009 at 2:13am

Dear Beka,WOW!!! Thankyou for representing me and for all Dystonians who cannot speak. May God be with you as you continue your battle. We will all be here praying for change and acknowledgment. Thankyou!

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