An Open Letter To BEKA

Beka,

Frist I want to say THANK YOU for all that you have done for all of us who suffer this dreaded condition. Of all the orgs and non profits out there c4d and YOU are truely without a doubt the one that have made the biggest impact in my life, YOU have taught me the most and have shown BY FAR the most compassion. YOU are friend to ALL and I've got to say; YOU WILL BE MISSED !!! Although I realize you will still be around :)

Secondly; KUDOS to you for doing this for YOURSELF and persueing other passions in your life. Trust me, it will do you and your dystonia a world of good. The happier and more fullfilled we are as people the more the beast remains dosil. I know this from frist hand experience.

During the past 7 - 8 months or so that I've been away, I can not begin to tell you what a difference it has made with my dystonia to not be living and breathing the beast everyday. I am doing so remarkedly well. I have taken all that I have learned about the nature of my dystonia and applied it to my life ... the first lesson being that of inner peace and happiness. I've always said that dystonia likes only that which is GOOD. We MUST follow our passions and dreams in life despite our dystonia's for if we do not we then give our dystonia's the power.


It's hard to believe that just over a year ago my legs had gotten so bad that I thought I was going to end up in a wheel chair ... Today I am out jogging short distances, walking up huge sand hills here in the desert with the greatest of ease, yes hills. Mind you a year ago it was a huge challenge just to get up even the smallest of an incline.

My dystonia is by means in remission or gone, infact I continue to progress and my storms are becoming so much more intense in nature. What has changed is that I now have the power, I have taken back my life and am out doing the things I ENJOY in life.

In closing I want to say to YOU and EVERYBODY that suffers this dreaded condition that: Life is worth LIVING, even with dystonia; not only do we all need to take control of our care but we also need to claim back our lifes. If lil' ole me, the one that is non~responsive to all meds and treatments and that continues to progress with the dystonia now consuming most of my body can do it then EVERYBODY CAN !!! Never give up and NEVER GIVE INTO YOUR dystonia.

I wish you all the best Beka. I am so happy for you.

Robin
aka Lil' One

NOTE: This letter is in responce to the following letter from Beka:

Stepping Aside From Dystonia

Greetings!

This year has been a time-consuming one for me, which is why I have come to the decision that I will be stepping aside from the dystonia community for the time being. As many of you know I have been involved since 1998, the inception of the non-profit Care4Dystonia, Inc.

I may first have come to your attention on the Dateline NBC show (on a major U.S. television station) that discussed the use of Botox for Cervical Dystonia in 1999.

However, other interests including law, political campaigns such as www.normansiegel.com, public advocacy, civil rights, and special 4-legged creatures are now taking more and more of my time along with my job responsibilities as an ICU RN.

As I leave for awhile, I urge the miscommunication among the various dystonia groups to stop. Alliances need to be strengthened. It is now up to you and to your families to "step up to the plate." It will work, if you all can contribute in a sensible, feasible and valuable manner. If the Breast Cancer non-profits can join hands, then by all means WE can do it too.

For now, I have done my job within the dystonia community. I have made many wonderful friends along the way and hope that will remain in close touch.

The C4D website will remain online and I will continue to MODERATE this Wego Forum and to serve as a consultant for the industry. However, the FB Fan Club will disappear as will the newsletters and monthly Email alerts due to time constraints.

And no longer will I respond to 3 a.m. Emails filled with questions while at work in the ICU setting. Each of you with dystonia must take charge of your OWN care; each of you has the ability to do so. It's time you did so; you have the power to do so.

In Closing, I quote Vince Lombardi : "Individual commitment to a group effort -- that is what makes a team work, a company work, a society work, a civilization work." ~~

Visit Dystonia Neuro Movement Disorder at: http://community.wegohealth.com/groups/group/show ?id=2028394%3AGroup%3A1015


Symposiums, Retreats and Runs Coming - Sept and October 2009

http://www.torticollis.org; http://www.spasmodictorticollis.org; http : //www.spiritedmovement.org http://www.pugetsounddystonia.com http://www.tylershope.org http://www.dystonia-parkinsons.org Jakes Ride


You can still follow me on http://twitter.com/care4dystonia now ! Latest Updates - Disability and Accomodation Requests.


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Thanks for your attention. See you on http://twitter.com and elsewhere online !
Best Regards to All,

beka serdans, RN, MS, NP
Care4Dystonia, Inc.