Video Greeting from Eastside Ellen

Just a quick heavily accented video greeting for you… THANKS FOR VISITING MY SITE.

Video – Eastside Ellen Speaks About Life with Foreign Accent Syndrome.

 

I hope you will continue to pray for productive research in regard to striving to understand what causes Foreign Accent Syndrome and how it may be treated.A speech related Bible quote for you:  “Dear children, let us not love with words or tongue but with actions and in truth.” —1 John 3:18/NIV

 

Six Months with Foreign Accent Syndrome and counting

It has now been six months since I first contracted Foreign Accent Syndrome.  Here is a fascinating video where I discovered that there was another person in a nearby area who had a similar manifestation in which her normal speech was replaced with a strongly accented way of speaking.

Next, let me say, that the video below is NOT staged. In fact it is extremely impromptu as evidenced by our lack of fine attire and makeup. Nonetheless, I think it is important to show this video to people in order to bring to light an extremely rare medical condition.

Fran found me via a local radio station who had interviewed me from time to time. “Fisher Fran” as we affectionately refer to her has  episodes of a few days with it. Her case, waxes and wanes with a good deal of normalness in between. She has other body weaknesses that resemble multiple sclerosis whereas I do not.

My foreign accent has continued for over six months now without relenting. Although, I have noticed improvement in some words as I apply tricks that I have developed through speech therapy. Another difference in our two cases is that I am able to sing in my “normal” voice, whereas, Fran cannot sing at all when she becomes accented (even though, she to sings for audiences).

Here is a video taken of me (Eastside Ellen) and Fisher Fran back in June 2009. At that point I had been speaking with foreign accented speech for a month and Fran was in day two of an exasperation of her symptoms.

This video was captured by Fran’s daughter and so is not exactly framed as well as a more experienced photographer would have done. PLUS… she and I were both in our grubbier clothes as we rushed to meet with one another without the benefit of clothing changes or make-up. We were just so happy to discover that we were not the only one with this problem that we couldn’t wait another moment. As you see in this video we are quite happy to have found one another and are enjoying our ability to joke about our situation in a unique way.

However, let me stress this. Foreign Accent Syndrome is NOT a joking matter. Rather it is an extremely rare medical malady involving the Broches'(speech) area of the brain. It is reported that only 39 medically documented cases have been reported…ever…in the whole world.  Because it is so rare, there are not many doctors who even know about it. Therein lies the problem. If they are unsure what causes it, how to fix it and it is so rare. There is not much help for a person who has it.

In fact that is the main purpose of me documenting as much as I can about it. Researchers could learn a lot about this if they applied themselves. Because it is such a rare occurrence the argument may be made that there is not much point in researching it from a cost benefit analysis standpoint. However, since it involves the study of the brain and speech/accent production, I think that this is a pioneering area that some university or speech pathology school would want to investigate more.

As one who has now endured it for six months, I am learning that I am teaching my speech pathologist at the same time she is teaching me. This is unchartered territory here. So it is going to take the willingness of all involved to recognize that we do not have all the answers. In fact, we must admit that we have far more questions than answers. Yet, since I am the one living with Foreign Accent Syndrome,  I am a self-made researcher trying to document for the benefit of medical knowledge and hopefully to bring a sense of understanding to both the sufferers and their loved ones.

I am going to try to get another video with Fran and me together within the next few days. This time I WILL at least look better for the camera : P

No Interview on 7-7

I was asked by several different people why I didn’t talk on WIBC radio this week. I told them that there was just too much happening in the world for me to even fit in the normal Tuesday morning time slot. Blessed boss of WIBC Tom Sevarino lost his battle with cancer. The “gloved one” Michael Jackson’s memorial service planned in California had all of the police and media in a tizzy. How could a small town gal with a rare disorder that is unknown by even much of the medical community compete with that? LOL. Nah, the radio producer even was kind enough to call to apologize, but I totally understand. News was happening.

It was funny, because one of my friends tweeted me fearing that she had missed the time slot of the report. She usually is driving into work at that time and finds the topics we discuss interesting. It has been eye-opening to see how very many people are familiar with Eastside Ellen’s foreign accent syndrome story. They all tell me that it is fascinating, which it is. I’ve run into people at the grocery store, church, the bank and recently the hospital who ask if I am Eastide Ellen. All of them smile!! Yes! They are also so kind as to show true empathy. These people are not just listening into a report, but are identifying with it. What would they do if this happened to them? That’s part of what I love about growing up and living in central Indiana; people really care about their neighbors.

At this point I am unsure as to whether I will continue to report at WIBC on Tuesday mornings. Perhaps the story is no longer newsworthy. I don’t know how programming decisions are made. All I do know is that I am going through something that is so very rare that even mainstream medical doctors don’t know how to handle it. There is an opportunity for pioneering medical research to be made, and I am the kind of person that will share it all. I totally believe that God remains in control of every detail. I trust that there is an ultimate good that will be realized as a result of this trial and the events that are happening even now. I derive great joy in knowing that there are people who are standing beside me in both “good thoughts” and prayers, who are as perplexed as I am. and who are as fascinated and dumbfounded as even the local medical community.  We may not know the answers yet, but it is comforting to know that Hoosiers join together in an attempt to help each other.

It is for just such a reason that being on WIBC 93.1 FM “the News and Talk of Indiana” has been a great source of comfort, inspiration, intrigue and humor in a time that otherwise could threaten to undo a person. I am so very proud to call myself a Hoosier — albeit one that sounds like some kind of foreigner.  I am still a farmer’s daughter, even though my voice may stand out a bit more when calling in the cows : D