Dystonia Neuro Movement Disorder

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Comment by Rogers Hartmann on September 11, 2009 at 1:17am

This info is for those who want to know about more exposure for Dystonia.

I was asked to speak at TED. TED has a larger following than Oprah. A small sampling of TED speakers is Bono, Bill Clinton, Bill Gates, Steve Jobs, Jane Goodall, etc...if you want more information go to www.lifewithdystonia.com or email beatdystonia@me.com

TED is well known around the world, but if you do not know of it, I can fill you in.

VERY good for all of those who want to stick together and fight together as a team for more awareness.

Comment by Marie on September 8, 2009 at 11:20am

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

Many of you recently received a message from Beka Serdans, the Group Leader of this Dystonia Group detailing her decision to refocus her efforts within the Dystonia Community online and offline. We support her decision and appreciate that she has chosen to continue participating here on WEGO Health.

As you all know, 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. We reserve the right to remove any content that we believe distracts from that goal, and have taken down the recent posts relating to this topic for that reason.

We encourage everyone to review WEGO Health’s 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 beka on September 6, 2009 at 1:30pm

Many would like to hear about your media press contributions.
Thanks.
beka

Comment by noelv on September 5, 2009 at 1:02pm

Artane had 2 horrendous physical side effects for me: dry mouth which was alleviated a little by an Rx toothpaste designed for dry mouth. The worst was the inability to perspire, which could be life threatening if you are outside in hot humid weather. I told my neuro and he let me off Artane because the side effects outweighed any minimal benefits that I got. BTW, you can't just stop taking Artane cold turkey. It builds a dependency and withdrawal symptoms sufferred by addicts can make your Dystonia a lot worse. I had to reduce the dosase by 1/3 each week over 3 weeks and I avoided the withdrawal symptoms.

Comment by Rogers Hartmann on September 5, 2009 at 11:23am

I had the dry mouth thing, too -- not fun, but I decided to chew sugar free gum for a while and that helped quite a bit. It was of major concern to me when doing some of the TV stuff...Sounds overly simple, but it did alleviate that particular symptom. My understanding from my doctor at USC Med. Center is that Artane helps with the misfirings coming from our lovely brains. (again, the most simple of explanations, but it is very easy to see online what Artane is for, if you have questions about it) Re: memory, at first, I noticed some memory issues, but those have dissipated over time. I know we are all different, but for what it's worth that is my experience with Artane. Finally, the scary side effects did not scare me b/c Dr. Lew said I could just stop taking it if anything weird happened and the side effect would stop.

Comment by Karen on September 5, 2009 at 4:51am

I'm taking 5 mg of Artane three times a day. I'm ashamed to admit that after awhile, between many med changes and memory and concentration issues, I forget what drug is supposed to do what. I believe it has helped with walking. I have a lot of trouble with dryness--cotton mouth way worse than any hangover! I actually have torn tissue inside my mouth, because it sticks to my teeth, and when I pull it away, the skin comes too. It also contributes to the ongoing constipation we all know and love. However, I know it makes a difference. I was sick for a week, and wasn't keeping a lot of anything down, so I essentially was without many of my meds, including Artane. Walking quickly worsened in terms of weakness/fatigue in my legs. So for what it's worth, there's my experience!

Karen

Comment by Rogers Hartmann on September 5, 2009 at 1:28am

Regarding, the most recent question about Anticholerginics -- TOTALLY from personal experience, the minute I started taking Artane I no longer needed my wheelchair, but I know everyone is different, so that is a convo with your doctor. I know the side effects scare many, but Artane got me walking again and out in the world. Just a patient's view. Also, I was told by my doctor that if I had side effects I could stop taking it immediately without any issues.

Comment by Rogers Hartmann on September 5, 2009 at 12:17am

Hello Wego Health Dystonia Folk,

I thought I should post after the mass email that went out to everyone. I am more than happy to help with doctor referrals and support. Many interesting and international media is moving forward and I truly believe it will help all of us.

My main website at this moment is www.lifewithdystonia.com

Doctors are my resource. I only write about my own experience or share my personal experiences -- anything beyond that I refer to great doctors. Anyone I have helped will tell you this.

Oprah just re-ran a number of times and there are other high profile media events that are about to happen that involve Dystonia. I will announce them as they are confirmed.

Anyway, happy to help. www.lifewithdystonia.com

Rogers
Ms. Rogers Hartmann
BEAT DYSTONIA (501)(C)(3)
beatdystonia@mac.com
xo

Comment by beka on August 31, 2009 at 5:50pm

Oprah is repeating the show about Parkinsons and Dystonia on Sept 1 2009. Check your local listings.

Comment by beka on August 30, 2009 at 8:31am

RFK, Jr. Quote:
Each time a man stands up for an ideal, or acts to improve the lot of others, or strikes out against injustice, he sends forth a tiny ripple of hope, and crossing each other from a million different centers of energy and daring, those ripples build a current which can sweep down the mightiest walls of oppression and resistance.

Words to ponder after this weekends events in DC.

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