Care4Dystonia, Inc.

Our new Educational Forum is up and running. Join and Learn from the Experts !! Please visit our Dr. Oz webpage to learn more about the Interview and CD Purchasing. The CDs cannot be duplicated or “dubbed”. Site Update :31.July.2008.

Dystonia meets

America’s Doctor : Dr. Mehmet Oz, M.D Nov 2, 2007 7am ESTOn Nov 2^nd 2007 “Oprah and Friends” XM Satellite Radio 156 featured Dr. Mehmet Oz, MD discussing the disorder, dystonia, with NYP’s own Critical Care nurse Beka Serdans, RN,MS, NP and Dr. Michael G. Kaplitt, M.D., PhD. The interview focused on one persons’ struggle with misdiagnosis, treatments and personal journey with dystonia.About Dystonia :Today there are over 40 million people in North America suffering from a movement disorder — one of them being the 3rd most common — DYSTONIA. Dystonia is a neurological disorder causing abnormal , involuntary postures, movements, tremors that remains cureless as well as disabling to many of its’ victims.Dr. Mehmet Oz, MD is the Professor and Vice Chairman of Surgery at Columbia

University in New York City, Director of the Cardiovascular Institute, and Founder and Director for the Complementary Medicine Program at

New York

Presbyterian

Hospital. He is a regular contributor to The Oprah Winfrey Show. Beka Serdans is a critical care nurse-NP within NYPs Critical Care Division and works with Dr. Oz. She has had dystonia for close to 20 years, underwent Deep Brain Stimulation (DBS ) at Weill Cornell for the control of her symptoms in 2004. She has published 2 books on her experiences with the disorder, and is a strong patient advocate working frequently with the media. Dr.Michael G. Kaplitt, MD, PhD, a pioneer in gene therapy, is Director of the Surgical Movement Disorder Program at Weill – Cornell as well as being Beka’s neurosurgeon. Useful Links :

• To access a free trial of XM Radio , visit http://www.xmtrial.com/oprahlp_free/learn.js.
• To view a Foto Essay of DBS, visit http://www.parasphotography/beka.html ( Shot at Weill-Cornell )
• To learn more about dystonia and its impact, visit www.care4dystonia.org today.

Note : Beka Serdans did not endorse any other specific dystonia related non-profits during the interview except for Care4Dystonia, Inc., which she founded in 2000. Dr. Kaplitt is the scientific advisor for this innovative patient-oriented organization

We’ve added excerpts from the Moving series online for visitor reading along with links on how to purchase both books.

Most recent blogs can be found on www.medscape.com/nurseshome webpage.

View our New Dr. Oz page today !

Copyright. c4d.2007

New blogs written by Beka about the current nursing shortage and Nurses’ Week can be found at http://medscapenursing.blogs.com/medscape_nursing/beka/index.html .

I just came home from Midtown. The city is crowded today with tourists spending plenty of Euros. The dollar exchange is in a sorry state.  I have to applaud www.parkinsonsappeal.com and their great work ( Martin , if you are reading this: I applaud you ! ). Their website has come along nicely with lots of good links and videos. Even this website is linked ! How cool! Word is getting around that a nurse can do much in the area of dystonia awareness, education and patient care referrals online. Still, I’m distressed that none of the dystonia groups in the US are talking or even attempting to collaborate with one another, even as Awareness week in June approaches in the US. I wonder if any of them read the Journal of Philanthropy ?They had a recent article on clashes between Foundations. I have resolved to not get involved in the political game of dystonia non-profits and to continue to do what I do best : Setting the PACE, which is our motto anyway. Why should one organization act as the only dystonia organization in the Western civilized hemisphere for patients and dystonia ?Each of us has something to give to the cause; it should be recognized and valued by all. I have heard that awareness of dystonia has reached a standstill. Awareness is not at a standstill. One has to reach out and motivate people. One does not need a “famous spokesperson” for the cause, one needs a good media story, a good pitch line and preserverance. No, I ain’t giving up- still writing to O-Magazine via omail@hearst.com . How about you ?

My fire escape is filled with thick books. It’s sunny and 80 degrees today. Simply delicious out here. The city is finally quiet with the Park Avenuites having gone to the Hamptons and elsewhere after a sorrow-filled  week echoed by a mad man on T.V. I’m studying and dreaming as always of where my next escape ( trip ) will take me. As I try to distinguish treatment modalities for stable ….

To read more of this blog visit http://medscapenursing.blogs.com/medscape_nursing/beka/index.html

It’s been an awful day, first beginning with the rain and the weather. The daffodils out on Park Avenue droop under the constant rain, somewhat reflecting my mood today. I’ve been glued to CNN International viewing the latest reports on the Virginia Tech events. It’s just been awful; my heart feels heavy. The Middle East has arrived here in the U.S. No place seems safe, not even a University campus. What are we supposed to do as a society ? Reevaluate our morals ? Behaviors ? Needs ? Desires ? I can only now imagine this happening at my medical center where security is scarce at times. But then again shootings like these can happen anywhere, anytime…Dystonia doesn’t even compare to today’s events….Where do we go from here ? Begin a dialogue ? Form additional committees ? Reassess LIFE. No doubts about that at all.

For another viewpoint regarding this topic visit http://medscapenursing.blogs.com/medscape_nursing/beka/index.html

If you’re interested, you can find more nursing related blogs at the following link:

www.medscape.com/nurseshome

Welcome to a new look, a new style, new information and a new feel to dystonia. Spring has arrived along with our new website ! First, we would like to thank Megan and her team at www.virtualmagpie.com for designing and compiling our new website and logo. Our new website has been reformatted and restructured to allow for easier navigation and reading of information.

Site visitors now have access to education material, research and community news, newsletter archives, a “library forum “ that transcends media/ in print, and video venues, information and resources about pain, pain relief measures, nutrition, disability updates, patient stories, direct links to oral medication information along with botulinum toxin therapy and surgical interventions. You can now comment on Bekas blogs directly on our site as well.

An artistic forum, which was launched in November 2006, and a DBS
photogaphic gallery is now also open for viewing.
We have tried to make this website as visible as possible such site visitors don’t have to search long and hard for valuable information. A majority of the information now provided has been written and compiled by our Founder, a practicing clinician and nurse practitioner with a clinical care focus on dystonia.

As always, your feedback , comments and suggestions are welcomed. We hope that you all will begin an open dialogue about what you would like to see on the site in the future. Feel free to email us at any time via infoc4d@aol.com.

We received an immense of feedback, both positive and negative, about our Founders’ commentary: Are We doing everything We should be Doing in Dystonia? The commentary can be found in our February 2007 issue.

Dystonia, Inc. began Guest Editorial Blogs recently. Our Founder was chosen by the group to write their first editorial to help “ stir things up a bit “ and collaborate with them on a more consistent basis. Our Founder did so !
The upcoming April Newsletter issue contains fascinating info on Stiff Man Syndrome, a disorder that can resemble paroxysmal dyskinesia; a new “ Career Change “ section, patient experiences with OMD and much more. Happy Reading !
Happy Spring ! —beka

Like the rest of the nation, I’ve been entranced by the lost Mt. Hood climbing expedition, tuning into CNN’s Larry King Live most of last evening. Now, I’ve never climbed any mountains in the U.S, but have hiked up 2-6 km mountains in Southern Bavaria and the Swiss Alps. During the Summer months, Europeans by the hundreds flock to the Hills where the film “The Sound of Music” was made on so-called ‘wandering or hiking tours’ for weeks at a time. Well planned hikes along trails lead hikers to Summits of various heights. It is an incredible feeling to be wandering the green low lying hills that bloom with wildflowers. Their scent fills your senses making you forget your everyday troubles quite easily.

Now, how do the rescuers even begin knowing where to look among the heavy piles of snow and the hidden ice crevasses for signs of the living? One wrong step can land you into an un-climbable situation among the peaks, valleys and glaciers that form a mountain leading to avalanches. Three experienced climbers; 1 fatality and 2 others remain missing now.

Of course, the debates and questions are arising amongst the media venues already. How well prepared were the climbers ? Why participate in such an extreme sport ? Why venture out on the technically difficult Northeastt Ridge of Mt. Hood ? Why leave their snow caves ? Why not ride the weather out ? None of us can answer these questions other than we can assume that the climbers made decisions as best as they could taking into account their own circumstances. We may never know what those true circumstances were. We, as nurses , make life-saving assessments and decisions everyday we work, do we not ?

I can say that hiking up a mountain is a wondrous thing- it is only you, the elements, your soul, and the mountain. Upon reaching a peak, one is surrounded by a certain indescribable quietness, a peaceful-ness, a heaven. You can almost touch the sky, even create a castle in the sky with your own icy breath. There is degree of isolation, yet comfort as well. The natural untouched beauty of the earth resides miles away and can be seen visually as well as felt. No fog, no smog exists just a yearning to give it another go on another even higher mountain. And so it goes…But Beauty can lead to tragedy.
What do you think Jen ???

A chest was to be opened by the bedside. We quickly converted the ICU room into an operating room. The 56-year-old CABG x 4 had been bleeding from her chest tubes profusely, almost like water running from a faucet. She had not stopped her Plavix in time, before her unexpected surgery. Our CT Fellow wrapped himself in a sterile blue gown. An Anesthesia Fellow was standing by the head of the bed administering drugs. I was scrambling, hanging blood and FFP as fast as I could while Aimee began titrating drips as the monitor showed a dropping, cascading downward spiral. Scott was managing the crash cart, staying one step ahead with calcium gluconate syringes.

The patient wasn’t mine, or Aimee’s or Scott’s. She belonged to a new grad who had just completed her orientation to the CTICU — a young, unseasoned nurse in critical care. She had stepped out of the room overwhelmed by the adrenalin rush that we seasoned nurses felt during events like these. The surgical blade sliced through the patients’ sternal incision. Bright red blood sprayed out of the patient’s chest towards the Fellows’ face masks. Retractors were set in place. The rush was on to find the “bleeder.”

As we worked together, I saw the new grad cringe at what she observed. To lighten the seriousness of the situation, Scott set into motion a few laughable “Greys’ Anatomy” scenarios. We all chuckled and laughed as the bleeder was finally sutured with 3-0 silk ties. The patient’s blood pressure returned to normal and we decided to pack the chest and leave it open for the night in case more bleeding began later. I hung more FFP to correct the patient’s coags. Soon we were cleaning up the room, converting it back to a typical patient room.
Later on in the shift we seasoned nurses (combined years in critical care 13+10 + 20 = 43 years), began discussing whether we thought new grads should be working in an ICU such as ours. Our unit has a high acuity and requires constant problem solving abilities. We had noticed that many of the new grads who are orienting in our ICU have no critical care experience. They are fresh out of school and perhaps lack critical thinking skills, something that we believe comes with years of experience.

I just looked at a stack of emails related to my work with dystonia. I had many from patients who were seeking help or asking for awareness magnets for distribution. One message caught my eye. It was from Solstice Neurosciences, manufacturers of botulinum toxin B — MyoBloc. Di had written a set of questions for a presentation that I was to do in January for their sales reps in Houston. One question — Please share with us how this condition physically and emotionally impacts you and what is it like to live with dystonia — was a tough one, a question that I had not thought about although I had lived with the disorder for close to 20 years.

I could only think of the email that I had first received when I had begun to get involved as a patient advocate for patients with dystonia. That email had arrived unexpectedly and described the impact of dystonia so well. Jack had written:

I’m a 41 year old male who was diagnosed with cervical dystonia recently and I think its now spreading to my left arm. I have a knot in below my left shoulder blade that hurts a lot. My major symptoms are a constant yes/yes head tremor, muscle stiffness, and tightness on the left side of my neck extending down my left arm. I can’t hold my left arm up over my head for a long time. It begins to get weak, tight, and painful.

“Dystonia has destroyed me. I am an angry and bitter person, unable to cope. I am extremely depressed. I shower maybe three or four times a month. I sleep a lot to escape. I rarely brush my teeth and I don’t eat meals anymore. I just snack and drink diet Pepsi. I’ve had only three haircuts this year. Going to the barber is a nightmare. I don’t work. My 78-year-old mother supports me. I can’t do anything. I rarely leave the house anymore. I haven’t done anything socially since the dystonia began. If I need anything from a store I drive my mother there and have her go in for me.

“I never thought I’d become like this. Medication only helps for a short while. My neurologist can’t do anything more for me as I have no money. I cry a lot. I yell a lot. Dystonia is the most horrible condition. I hate it. I hate what it’s done to me. I’m jealous and contemptuous of people who have no muscle problems. They haven’t got a clue how sickening this disorder is…All I know is that I’m not going to grow into old age with it. I went to a support group once, but didn’t get anything out of it. I’m not being critical of them because I know they suffer too. But they were mostly women, married, and older than me. I can’t relate. I cannot stand the constant head shaking. I’m a weirdo. How do you cope with this hideous, crappy disorder?”

I thought reading this email would make a great impact. I never heard from Jack again. But his email described dystonia all too well. I could relate to it. However, living with a chronic disease involves making a choice: to live life to the fullest or to do nothing, and not live at all.