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
Weekly Check-In At WIBC 93.1 FM
Tuesday mornings at 7:45 a.m. has become a time to report in to the local Indianapolis radio station on what is happening with me and the Foreign Accent Syndrome. This is a time when I pray that God will use me to reach out to the community with what I am learning through this trial. It is a time to reflect and communicate on how people talk to one another. Since communication is one of my greatest passions, I see this as an opportunity and am thankful for the chance to bring some insight as I am going through it.
I do get a lot of compliments on my good attitude as I go through the frustration and predictable concerns of any person going through an unpredictable dilemma. Again, opportunity through the trial, as I am allowed to come back to the fact that even though I do know what is happening . . . God does!!! And there is the source of my peace. Not once is God surprised by what is happening.
Here are the two audiio files for you that can listen to them… the first one in particular is quite small as it is just a teaser.
Then Terri and Jaimie do the actual segment with me at the link below.
The general contents of this weeks report were about
What accent would you like to speak with if you could choose? How long has it been and what have they done for you? How do you react when people keep asking where you are from? What about speech therapy? It is very rare and research and hard to learn about. Will your original voice come back? How people can think or do to people with FAS that are so cruel. Are there any good things as a result of talking with an accent? Do people treat you differently? Mentioning of teaching 4-H dog club. Terri announced my website (this one) Ellen5e.com so that people can keep up and comment themselves.
Just before signing off of this broadcast the producer Dan recorded me saying the following sentence: “The rain in Spain falls mainly on the plain.” They are going to compare me saying this sentence from week to week to see if the accent starts to change back.
They ended the broadcast by playing the Swedish national anthem saying that they may use that in future when I am coming on. However, I do not think that is such a good idea. I do NOT want true Swedes to be offended and as I said in today’s broadcast… though much of my word pronunciations take on a Swedish strong “oo”s and “u”s; it is NOT a true Swedish dialect. So I will be thinking of a different theme song for the segment… do YOU have any good ideas?
As always I appreciate your reading this and sharing any information that YOU may have about this incredibly rare and troubling medical condition called Foreign Accent Syndrome.
Laughter is the Best Medicine, Right?
This morning I was interviewed by our local Indianapolis radio station WIBC. Big Joe and Terri Stacey have both seen and talked with me at radio events in the past, so they know that this new voice is not my regular voice. They are as facinated by this strange occurence as I am.
This foreign accent syndrome is so quite an interesting phenomena!! There are many different videos about it on YouTube even tho it is so rare as to have only 100 people in the world with it. Apparently, it is so rare that not many regular doctors have heard about it before either.
They asked if I would come on the morning show with them to discuss this recent verbal U-turn in my life and I was more than happy to. I can think of nothing better than to share this rare occurance with my friends and neighbors over the 50,000 watts (or however big an area it is now), so that more people are made aware.
Also, as it is happening to me, I totally trust these dear radio personalities, because I have seen the love in their hearts for the community expressed over and over again. So I trust them to ask me whatever they want and I will answer it! They both are witty as well, so we can also have fun and laugh a bit, so as not to get bogged down with some kind of gravity of the situation. It is out of my control. I do NOT know if I will get my regular voice back, or if I will be continuing to sound like a world traveler that has never really gone anywhere.
This interview was a very good one — balancing out the bizareness with the scientific wonder as well as keeping it light with humor. Way to go Terri and Joe click this link to listen>> .wibcinterview090526
Friends: Angels in the flesh
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- Angel Alex and his halo.
This is a good opportunity for me to express my thankfulness for really good friends of such calibur that they can best be described as angels in the flesh.
One such friend is Alex Conner. Just tonight he used a video conference call to help me set up my Ellen5e.com site that I’ve wanted to get going for over a year now. Alex is a very talented Indy Christian Geek who really knows all the bells and whistles of the computer programming and code world. But more than just an extremely technologically gifted young man, he is a guy who treats others with the convictions of a true Christ-follower. He makes the extremely above my head concepts of attempting to understand the workings of a computer much more understandable. He definitely is gifted with super-human patience and a unique ability to explain things in a way that a person can grasp the meaning without feeling talked down to.
I went from having a somewhat depressing day of rain and frustrations, to actually being able to get something very substantial done… or at least a lot further along in its development. This is because of sacrificing of time for my benefit by one of my personal angels. Thanks Alex!! You are my angel for the day… probably much more like a week or month.
WHAT IT WAS VS. WHAT IT IS
I have had quite a few brand new friends who I have met via newmedia and on the internet who have never heard me talk before the “ATTACK” so when they hear me speaking on the recent video clips they do not think anything about my heavy weird accent.
ASIDE: By the way the votes for “What kind of accent do you think it is?” is leaning very heavily toward French and Swedish/Norwegian. One good friend has accused me of being a Russian spy. And one of my 4H dog club kids thinks I sound British like Victoria Stillwell of dog training fame.
BEFORE: To help those people who have never heard my “regular talking voice” here is a clip of me conducting an interview of an intercity ministry. http://www.youtube.com/watch?v=1JQjncoi9jc You will notice some hesitation in my speech as I am thinking of the questions off the cuff, but even a very untrained ear can tell I do not sound like the same person.
AFTER: Now… compare this to my most recent little clip from last night
http://www.tokbox.com/vm/b6ae3opqguin
You hear a very noticeable difference don’t you??
Friends, students and family are helping me to laugh about it, because if I don’t stay light-hearted enough it will make me want to cry.
THIS IS NOT ME!!
My regular voice is gone! Instead I am having to hear these weird accents coming out of my mouth. STILL, I am extremely thankful to have any voice at all. Can you imagine it?
I have had friends call me on the phone, and then just about hang up as they say “I’m sorry, I have gotten the wrong number.” I go into a quick “wait a minute! it is me, Ellen, don’t hang up!” Then I must give them some kind of fact that a stranger wouldn’t know, to convince them it is ME!! It IS me!!
It has now been a week and a half since the first numbness showed up, and almost as long that I have been speaking with a foreign accent. I sometimes get a bit down about the situation. No doctor has an answer about what is going on — we just don’t see any obvious signs of stroke or any bad tumor or anything on CT or MRI.
The speech therapist I saw on Wednesday was thinking maybe Bells Palsy, but some of the symptoms do not jive. I have just started finding something called “Foreign Accent Syndrome” mentioned on the web. So I will continue to research as I await my neurologist appt. on the 29th.
I praise God that He never gives us more than we can handle. I am being forced to
(1) speak funny OR (2) shut-up. Those of you who know my passion for communication (talking with people and about the Gospel) know which option of those two that I am taking.
Here are some things running through my head a lot lately:
“Be still — and KNOW — that I AM GOD!” –
We are fearfully and wonderfully made; tho’ this is scarey it IS facinating!
I must laugh because if I take it too seriously I will cry.
How much faith do I really have?
I choose to believe that God IS in control of even this.
What do you think about this? I REALLY want to know.
I am seeking any advice, ideas or answers anyone might have.
STRENGTH FROM THE STRUGGLE
I am now back from the hospital and am continuing to have speech problems.
LEARNING A LOT DURING THIS TIME: