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Six Months with Foreign Accent Syndrome and counting

ellen5e — Thu, 12 Nov 2009 20:46:55 +0000

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

ellen5e — Sat, 11 Jul 2009 00:37:51 +0000

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

Not the Report I Was Hoping to Hear

ellen5e — Fri, 03 Jul 2009 06:21:09 +0000

I was very excited about the EEG test that I had a couple of weeks ago. The technician had wired me up to the machine to record brainwaves as I performed the requested tasks. However, the lady surprised me by having me sing “You are my Sunshine” followed immediately by speaking the words. I was excited to learn that she did this because of my demonstration before the testing began.

It was with great anticipation that I went to see Dr. John Scott, my neurologist for my follow up appointment on Wednesday. I could hardly wait to hear what the EEG scribblings would show. I bet that there would be irrefutable evidence that my speech area was located in a different part of the brain than that which I used to sing. And since I can since in my “regular” voice, I thought that meant that I would be able to fully recover my normal, unaccented voice.

However, my excitement turned to disappointment when I didn’t get such a report. “Your EEG is normal,” came the report. Although that is good news in regard to connectivity of brainwaves and such, it didn’t help shed light on what is actually going on with me.

When I put the doctor on the spot with, “Well, if I just came to you with these symptoms and I had never even mentioned Foreign Accent Syndrome, what would you do with me?”

Dr. Scott told me that there simply isn’t an easy way to figure out what is going on with me. He said that in this local hospital network there simply aren’t specialists who deal with speech and how one might suddenly be stricken with a foreign accent. The closest related doctors that he could think of deal more with dementia than speech. There are also doctors who handle speech problems as it relates to psychologically based maladies, but I don’t really fit into that category either.

The bottom line of our follow up appointment is that Dr. Scott was entertaining the idea that it might be Foreign Accent Syndrome, but we are unsure of where to go from here. What testing or studies should be done. Dr. Jack Ryalls, of University of Central Florida is an expert on Foreign Accent Syndrome. My neurologist asked me to have Dr. Ryalls email him with suggestions for tests and then he will consider those recommendations and schedule them accordingly if possible. For example a functional MRI has been known to show which areas of the brain are affected, but there may not be the proper imaging tools located around here.

It is looking more and more like I am going to be dependent on some sort of a School of Medicine to launch an investigation, or include me in a study of some kind, because there doesn’t appear to be anything around here like me. Truly, I am feeling very foreign now, not just in accent, but in the idea that people just don’t know what to do with me or this problem.

There are very many people who say that I have a beautiful sounding accent. They all are intrigued by the very idea that I have this affliction. It truly is bizarre, however what to do about it? That is the question. All in all, I didn’t get the report that I was hoping for.

That is why I continue to scour the internet for more information on what may explain this. I am amassing quite a lot of documentation, but not getting to the answers yet. There is so little known about such a rarity. Still, I press on. . . there are others who are looking for the same answers out there. Still there are others who don’t know who to turn to for help. I, at least, have a group of doctors who are legitimately trying to get to the source of the problem.s

Video Greeting from Eastside Ellen

ellen5e — Tue, 23 Jun 2009 07:53:37 +0000

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


TokBox - Free Video Chat and Video Messaging

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

FAS Friends

ellen5e — Tue, 16 Jun 2009 05:33:01 +0000

I met with a new friend tonight who I call “Fishers Fran.” We both have Foreign Accent Syndrome, (an extremely rare

Eastside Ellen and Fishers Fran shake up a local Steak 'n' Shake. ---Photo by waitress Cloe.

medical condition that causes a person to speak with a foreign accent that is not their own) and live in the Indy area.

Fran had some friends tell her about hearing me on the WIBC 93.1 FM radio spots I’ve been doing over the last couple Tuesday mornings by invitation of the Morning Show personalities Terri Stacy and Big Joe Stayzniak. Her friends told her that she must listen. Then Fran took the initiative to call the radio station and they passed along my name and told her I was on FaceBook where she sent me a message.

Last Tuesday evening when we first spoke by phone, Fran had her normal voice. Her foreign accent came on suddenly for her along with left side neuromuscular symptoms back in 2005. Unlike me, her regular voice has returned, but she does have episodes where the accent returns for a few days. In fact she recently was interviewed about her Foreign Accent Syndrome story in an article for the April Issue of a magazine that is popular with the Catholic faith. I am sorry that I do not have the publications name right now, but I will edit this post when I have it.

Today she called to say that her voice has “flipped” so that she has the accent again. Her voice does have strong similarities to my own, but is definitely different. She can say some long “A” sounds that I cannot, and I can pronounce the “SK” sound that she cannot. So it was very enlightening as we met at a northeast side Steak and Shake for a friendly supper. Many patrons stared as we spoke and laughed together. Our waitress asked the inevitable “where are you from” question. To which we both smiled and replied “where do you think?” “Think” was pronounced “Sink” by Fran and more like “Tink” by me. Our waitress took a while to understand the fact that we are not FROM Europe and now living in the Indiana. Rather, we are both Midwestern Americans who are speaking with very strong foreign accents. She guessed Fran as more Eastern European and me she placed as Irish. LOL. Anyway our waitress Cloe was kind enough to snap our photo with my camera.

Given that there have been reportedly less than one hundred cases of Foreign Accent Syndrome ever reported worldwide and that so very few people, including medical professionals, have even heard of the affliction, I believe our budding friendship is an answer to prayer! It was encouraging to talk to someone who understands what it feels like to not have the voice/accent you have had your whole life. I feel greatly blessed by meeting her, and especially since she is within short driving distance.

We may have discovered a new comedy team in the making as well. We thoroughly entertained Fran’s daughters and husband with our silliness as we each corrected the others accent. Though our accents have some similar qualities, Fran sounds more Eastern block European (more Russian), whereas my accent sounds more French mixed with Norwegian. Her husband said that we sound like we are from different parts of Europe, but European all the same. I think it was an encouragement to her family as well as we were able to lightheartedly share our stories. Her family was able to see another person with the same thing happening so that they could feel less alone in the peculiarity of it.

Below is the link to a video that her daughter Celia shot of us. Please be kind to us as this was totally impromptu shooting so I am not wearing any make up and am looking more unkempt than I would have liked. However, the spontaneity of the shoot makes it too good not to post.

Foreign Accent Syndrome Friends

Now, I really would like to hear what you think about this post so please leave a comment. Thanks.

Update: 2 Arrested in Car Crash

ellen5e — Wed, 15 Apr 2009 16:58:00 +0000

Local television stations are reporting more details about last night’s crash. James Hopkins, 21 of Indianapolis, and a female passenger were arrested for the incident. They reported that they had been carjacked. This is also what I had heard first from his mother when she spoke with me last night across from scene. WTHR news is reporting that the story they told appears to be not exactly true.

As it turns out, Mr. Hopkins should not have been out driving at all because he was under house arrest. Though I have yet to see the scene in the daylight, the reports are saying that a bush, a pine tree and a gas meter were the major damages done by the vehicle. The house was spared from major damage and no injuries were reported.

Car Crashes Into House

ellen5e — Wed, 15 Apr 2009 05:05:00 +0000

BREAKING NEWS — Indianapolis Eastside….
in the 7200 block of Pleasant Run Parkway. VERY near where I live. At about 10:30 p.m. I noticed some flashing lights of emergency vehicles in our backyard and apparently very near the front of a neighbor who has a child with health concerns. From the upstairs bathroom I had a better view as I noticed the two fire trucks, and rescue vehicle were moving slowly down the block. This didn’t make sense. They had appeared to be in front of one house for quite a while, but now they were moving! So it couldn’t be a fire or home rescue.

The other odd thing, along with the policemen who were arriving, there must have been a dozen or so neighbors milling about. Standing at the edges of their lawns, sidewalks or drives and looking up and down the street. There were several people shining flashlights along the side of the road, sidewalk and into some lawn edges. From where I stood, I could see one neighbor and he son paying quite a bit of attention to something large lying in the road near the far curb. But it was too dark to see very well, I could just make out it’s size from the flashlights beams dancing across it. Several different people acknowledged this thing lying in the street but kept a respectful distance from it. What was it? Was that a body?

Since the neighbor and his son were going over to the house of my newer neighbor friends, I decided that a real investigation was in order. I put on my shoes and headed to David and Ann’s house (not their real names).

This is what I discovered:
David and Ann had been watching T.V. in their living room when they heard a racing car and a very loud “BOOM”. Ann said that it sounded like a blowing transformer only multiple times louder like an explosion. They both jumped up out of their chairs and ran through their front door that was only about 10 feet from the couch. As they emerged out onto their front yard they could see the car it had come to crash into a house at the other end of the block!!

See the satellite photo with markers:

Neighborhood Crash Map
Originally uploaded by Ellen5e

This is what is surmised at this time: (see the photo with numbers)

[1] The boulder rock at the edge of David and Ann’s front yard was struck by the speeding car which was reportedly driven by a young man with a young woman. Although David and Ann did not see the young people, someone reportedly saw them run from the scene.

Left in the Lawn
Originally uploaded by Ellen5e

[2] There was a piece of the car at the edge of their yard (it looks like a piece of bumper or undercarriage). David and Ann’s boulder rock was yards east and across the road near the far curb [3]. It was this boulder that I had seen from the distance lying in the road.

As I walked with my camera along the north sidewalk, I noticed a good deal of wire that appeared to be either telephone wiring or some kind of cable broken and lying along almost the entire walkway as I went down to where the police activity was happening at the far end of the block. There was a teal colored car [4] with its passenger front end crashed into the brick of a house where a state trouper lives!

I stayed on the far side of the road and took a few photos though it was dark and rainy and my camera is not of professional quality. I did my best to hopefully document some neighborhood news. As I was taking photos Channel 13 local TV news trucks were arriving and setting up. I could smell the faint odor of gas and there was a gas utility truck in the area, but there appeared to be no real danger.

As I was body-tripodding my camera shots, another car drove up and the gray headed woman started talking with me. She said that this crashed car was her son’s. He was at his apartment right now and told her that he had been hit on the head and someone took off with his car. She asked me if it would be able to be driven away. I told her, that it looked too smashed into the house to be able to drive. She got a cell phone call and started to get into her car, so I ran to the group of officers saying “officer, quickly, that lady over there says she is the driver’s mother and she’s getting ready to take off.” Two officers went straight to her, and another listened to what I had to report. He chuckled when I repeated the part about the son claiming to be hit over the head. “I am sure that’s not the first time you’ve heard that one,” I said to him, as he laughed and nodded.

I then asked that officer if I might get some closer photos. He then asked if I were a reporter. I said that I do some neighborhood reporting with IndyChristian.com but that I live nearby and just want to get a few pictures. He told me that since any photo I took may be evidence he didn’t want me taking any more photos. I told him that I would gladly hand over anything I took, but sadly I would comply.

Luckily, I had already taken some photos, though the darkness and all the lights reflecting off the rain hindered my photographic abilities. At least I have a couple of shots to prove that I was there. Maybe I’ll even scoop the Indianapolis Star. LOL

These unusual events in our neighborhood brought to mind how very important it is to stay in touch with your neighbors. God tells us to love our neighbors as ourselves. I was truly concerned for the safety of not just my own family, but many of the others who live around me. It was refreshing to see, that even as people were settling down for sleep, they came out of their homes and checked on one another. At a time when many news venues report on the selfishness and hardness of so many people, it was heartening to witness people in my neighborhood who haven’t forgot how to be neighborly.

ellen5e.com » eastside

Six Months with Foreign Accent Syndrome and counting

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