beka Female manhattan, United States: Share

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Dystonia

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Latest Activity

beka replied to the discussion Spinal Cord stimulators- PAIN CONTROL Oct 8

beka replied to the discussion Falls and Dystonia Oct 8

beka replied to the discussion Dystonia Research Library Oct 8

beka replied to the discussion Things I never did before Dystonia ... whoops Oct 8

beka replied to the discussion Botox - 1st time questions Oct 8

beka replied to the discussion Dystonia Research Library Oct 8

beka replied to the discussion Things you DID Before Dystonia ? Life and Emotions..?? Oct 8

beka replied to the discussion Your Type of Dystonia and Current Treatment.. Oct 8

Profile Information

Age: Over Age 40 !

City: New York, New York !!

State: New York

About me: Well, I'm not sure what I should say about myself. Too many of you know me, even though I'm one of those who likes to be behind the spotlight. This Forum has been a dream of mine for some time- providing correct education and information about dystonia. Too many other BBs are too social and chatty for me. I love silence. Not that we dont need social networks - we do- but I'm more of a loner doing things on my own- always moving forward...strongly believing that if all the dystonia nonprofits put aside their differences, arguements, conflicts etc. TOGETHER we could accomplish much. We really don't need a celebrity to sell dystonia. Each of YOU who have joined this Forum is a CELEBRITY ! You MATTER as does dystonia..but Life also has much to give...You just have to find it, no longer what it was before dystonia, but what it will be...That's key !

My motivations for joining WEGO Health: Help more people, Connect with other health activists (vigorous advocates health care specialists nonprofit leaders experienced community members), Expand my professional community, Increase my visibility online

My primary blog: http://www.medscape.com/nurseshome

My favorite message board/online group: WEGO Health - Dystonia Forum

Regarding the above board / group, I: manage the group

My podcasts: on YouTube

Podcast topic: Dystonia and C4D Advertisements

My articles / books: I'm Moving Two and I'm Moving On..Are U ?
Available thru www.xilibris.com

My primary personal website: http://www.care4dystonia.org

Second personal website: http://www.care4dystonia.org

Other places you can find me: Google, Yahoo, Fliker, etc. , OPrah and the Oz Radio Interview Feb 2008

Health care resource 1 I recommend: Medscape, eMedicine, PubMed, WebMD

Health care resource 2 I recommend: WegoHealth

Nonprofit or other organization 1 I recommend: Care4Dystonia, Inc., NSTA

Nonprofit or other organization 2 I recommend: Dystonia Association of Kentucky

Book I recommend the most: The Last Lecture by Randy Pausch

Second book I recommend: What Happened by T. McCollough about the Bush presidency

Beka's Blog

September:Dystonia Awareness Month

How aware are you of this rare neurological disorder ? Are you or a family member at risk for developing it ? Take our " Are You At Risk ? " quiz at http://www.youtube.com/watch?v=auTIZnbVJSY. Let us know about your events during September that brings attention to this rare , but common disorder. More common than you think ! Beka Moderator Dystonia Forum

Posted on September 8th, 2008 at 5:02pm —

Is the Nursing Shortage affecting your Care ?

As a actively practicing nurse, I am wondering if the current nursing shortage is affecting the care you receive from your doctor, within the hospital system, clinics etc. By 2010, most of us who are over the age of 45 will be seeking retirement and leaving the field. Experts assume that we will encounter a crisis or loss of over 250k nurses by 2010. No an easy number to swallow. Working in ICU has not become easier; families crowd the waiting rooms, all waiting for optimal results from test res… Continue

Posted on August 14th, 2008 at 5:18pm — 1 Comment

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Comment Wall (29 comments)

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At 9:32pm on October 5th, 2008, Cindyrella said…: Yes, Dystonia is what it is. I understand about the fundraise thing. I am thinking about you. And Thank you fo rall that you do to help and educate not just those that have Dystonia but thos ewho can help.

Real Soft Hug!!

At 6:08pm on September 27th, 2008, Thorns said…: Beka, sorry to hear about your battery I know your life will be miserable until you get the battery replaced. Here in Canada it is covered by the hospital that my brother had it done in, universal healthcare. In Canada we have a trilliam fund also that covers people's med's that can't afford them it set up to be geared to a person's income plus if a person is not working but on assistance they get their med's covered though social assistance. I wonder if you got in touch with the people from medtronic to see if they have any type of assistance with the batteries or know a organization that can help. I don't know why there is no safe guard's in place before they would do this operation on someone. Wishing you luck Thorns

At 10:22pm on September 25th, 2008, beka said…: Thank you for the HUG.. Only problem is that I'm a bad fundraiser .. It's never been one of my strengths... But all will be well... Dystonia is what it is...yes ?
beka

At 8:08pm on September 25th, 2008, Cindyrella said…: Beka:

I read your message on yoru battery life. I am so sorry. I have an idea though.... Robin will probaly knwo more about this than I do do...

Anyway, Shakey Amy from myspce held a huge fundraiser in Dallas , TX ( I live in Fort Worth) anyway they raised tons of money gave some to a Dystonia Foundation and have used the rest for their bills and medical trips. What about something like for you.

I don't knwo much about that stuff, but I vaule you as a person and your work. I will do what I can to help if you decide to do something.

Anyway Robin will know all the links to her page and such...

here's a hug ....

CindyLyn

At 1:10pm on September 11th, 2008, Rosemary said…: Hi Bekka: Wow, disc fractures- I am not alone! They think that the Dystonia- in addition to creating the mess to begin with-- actually twisted my surgeries apart-- breaking the screws on the first, second surgeries, and ending with the malposition of the plate on the third surgery. At least it made it easy for me to qualify for SS disability (joke :)?)

I will look at post you mention. Interestingly-- at least for now-- other than omega-3's, calcium + D, and a multi every other day, I am not sure how big I am on supplements. My position- again, based on what I know now-- is that it is better to try to get nutrients from food, mostly because of growing concern about potential toxicities from supplements. Still, I know not everyone is able to, has access to, or wants to make good choices, and supplements have there place, for this reason I keep an open mind.

If I can make it through a Master's in Nutrition (one class at a time given disability. It will take a long time), my goal is to help special needs populations like those with dystonia, ms, spinal cord injury, and others.

Thanks again for this community. It has made my day on more than one occasion.

At 12:28pm on September 11th, 2008, Rosemary said…: Hi Bekka: I am a decent writer/editor ( not the best, but solid). If I can help in some way with powerpoint you mentioned in recent announcment I would be honored.
Do you know Neal Hermanowicz at UCI? He is my Dystonia doctor, although I see a pain doctor more regularly because of all the complications I had because of such a late diagnosis (disc damage, stenosis, failed surgeries, etc..). Is it common for Dystonia types to have vertebral/disc damage?

At 11:03am on August 21st, 2008, ImBlessed said…: Thank you Beka for your comments. I've never heard of hemidystonia before, but you can bet i'm going to do some research on it. Can you enlighten me, briefly, on what it is. Thank you. Sincerely, I'm Blessed.

At 4:14pm on July 25th, 2008, GGMel said…: Thanks, beka for the get well wishes. I'm doing my best to get back to the norm. I am improving, but knowing me, I want it to happen "right now." Not everything works that way:( If my new meds help, I should be ready to run the first women's track race:) I have noticed somewhat of a change in my cervical dystonia...it seems to be more aggrevated. I recently had botox, therefore I didn't expect this to happen. I wonder if some other disorders in your system might trigger this to happen. If anyone has any answers, please contact me. Many thanks to all of my friends:)

Mel

At 7:58pm on July 17th, 2008, Audrey Aldous said…: How do I get to the disability line Beka?

At 6:22pm on July 17th, 2008, Audrey Aldous said…: Hi Beka, still haven't got any news for my hearing with the adl judge about my disability, but still suffering with stress and depression, and this as we all know only adds to the severity of the spasms. I'm hanging in there tho and trying hard to remain positive, but wonder how long I can keep this up??? Sure does change your life and world when you have this desease I now know as Dystonia. Hope all is well with you and all the others that suffer from this. I am so glad to see the responses and know that I am not alone in this. Thanks for being there for me. Audrey