Here is information on Episodic Ataxia from CINCH (Consortium for the clinical investigations of Channelopathies) from UCLA and the Medical University of Rochester New York. Also Information on Episodic Ataxia from the National Ataxia Foundation. I have been the patient advocate for CINCH for the last several years. CINCH has been involved in the study of three rare disorders including episodic ataxia. Research is being conducted on Episodic Ataxia and currently a few locations are in the process of performing clinical trials.
I have travelled to Los Angeles once and New York twice to give the patient's perspective on Episodic Ataxia. I have translated the information in Spanish. The following is the English information with my Spanish translations.
Translations I have just finished for the National Ataxia Foundation.
Translations done for UCLA and the Medical University of Rochester, New York
Well, I decided to join in the fun and go to a New Year's Eve party with my brother. His wife is from Mexico, so we went to her side of the family. Relatives and siblings total a small city. The music was loud, and the food plenty.
We had eaten at a restaurant beforehand because we already had reservations. But that did not seem to matter. When we said we had already eaten, they ignored you, and proceeded to tell you the menu anyway. When you repeated the line that you had already eaten, they served you anyway. So after awhile, you just gave up and let them serve you, but you didn't touch the food.
But of course the highlight was when I started to get sick. I kept fighting it off to no avail. I looked at the clock ten minutes to midnight, the clock kept ticking down. Soon it was midnight. I could barely stand and throngs of people came to wish me happy new year. With each new hug and kiss, I lost a little more balance. Mexicans do not have little parties - they have big parties. Santiago, my brother's brother-in-law must have hugged me for five minutes, but that was not the nail in the coffin. It was a teenage boy whose name I do not know who came over to hug me shaking me like one of his comrades and I was down for the count.
My wife and brother had to carry me to the car, because I had a violent attack. Of course, one of the party goers stated the obvious, "He had a little too much." I thought to myself, "yes, but it is not what you think."
Today January 1st, I hope I recuperate, but these attacks are the worst.
At some point with a disorder like Episodic Ataxia, the eventual question one has to ask him/herself is - Is it time to go on disability? This is a question that eats at the very core of who we are when we have a disorder that so dramatically affects our quality of life.
The decision to go on disability was heart wrenching for me. I knew I was not carrying my weight at work, and I knew others were covering for me or at least that is how I felt. I had to go to the supply room several times a day to lie down because I always felt ataxic.
I earned two degrees. I loved the challenge of work. I liked the interaction with my coworkers, but my body was not cooperating. I first went on partial disability but then with time went on full time disability. I will never get used to not working. It’s not in my nature.
But at some point, I had to make the decision on what was better for my family. The questions that went through my mind was could I afford it? What would be the impact on my family?
For those who have Episodic Ataxia or any other disabling disorder, there are steps one could take before EA becomes too disabling to work: Make sure you are well educated so you can have a sit down job, That will allow you to be in the work force longer; Make sure your company offers 3rd party disability and if the option is they will pay for 50% or 66 2/3, but you have to pay for the extra premium if you take 66 2/3, choose the latter option; Make sure you are seeing your neurologist on a regular basis so you a medical track record for Social Security. I worked in the private sector, but government jobs are a good place to be for the disabled because these jobs cater to the disabled in many cases better than the private sector.
A couple of other items you might consider are staying out of debt, and save every penny you can, because the unknown of the disability is the scariest part. If you are out of debt, and you have savings you will be better able to handle the coming storms.
We have not been dealt a good hand, but there are things you can do now to prepare for any unforeseen eventuality.
I just posted my Christmas newsletter if you would like to read it. I do not talk about my ataxia. click here English version.
Acabo de subir mi carta navideña en mi blog. No hablo sobre mi ataxia. haga clic en versión en español.
December 24th, Dr Yoon-Hee Cha from UCLA will be visiting us for her annual follow-up since we are registered with the clinical trials. Clinical trials haven't gone very far yet because of governmental bureaucracy, but new funding is expected next year.
El 24 de diciembre, la doctora Yoon-Hee Cha de UCLA nos visitará para su seguimiento anual de las pruebas clínicas. Hay mucha burocracia con las pruebas clínicas por eso todavía no han hecho mucho, pero se espera que habrá suficiente fondos el año que viene para las pruebas clínicas
Hi I invite you to tell your story and make comments on your experiences with Episodic Ataxia.
Les invito a contar su historia o hacer comentarios sobre su experiencia con la ataxia episódica
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