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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

WIBC Interview for June 30th

ellen5e — Tue, 30 Jun 2009 19:24:27 +0000

Today’s interview with Terri Stacey and Big Joe Stayzniak on WIBC 93.1 FM can be heard at the following link. However, before you listen let me explain one thing. Earlier in the morning show, Joe and Terri were talking about a bit of a mystery that is happening at the radio station. Newsman Joe Ullery noted having found two french fries lying there at the station. Previously, there were found two fingernails (of the press-on variety) that had a FRENCH manicure. I found it funny that Joe Ullery has almost made a shrine of the fingernails because they make him feel happy. Why does Joe keep “noticing these things but not disturb the scene”? So it was my bright idea to mention a possible solution to the mystery. LOL

09-0630-WIBC-no.06-ed-sm

Summary: refer jokingly to the French Connection mystery at the radio station, excited to see neurologist tomorrow for EEG results, singing is fine but speaking is accented, different parts of the brain? Speech therapy scheduled to start in two weeks. When you dream do you speak with your accented voice? Working on words to make it better. Is the accent getting better or not? One step at a time. Happy July 4th everyone! Have a “Bangin’ Time”!

WIBC interview June 23rd

ellen5e — Thu, 25 Jun 2009 03:04:41 +0000

Here is the audio for the interview with WIBC 93.1 FM’s Big Joe and Terri Stacey for this week.

WIBC-09-0623-no.5-sm

Briefly: talk about whether they think my foreign accent is getting better? What is an EEG? What happened during the EEG? And the benefits of friending on FaceBook.

Weekly Report on WIBC

ellen5e — Thu, 18 Jun 2009 06:17:58 +0000

This weeks report at WIBC 93.1 FM sound file is at the following link:

WIBC 04 Sound File of Terri Stacey and Big Joe Staysniak of WIBC 93.1 FM interviewing me.

This episode is mostly about meeting another FAS person we’ve named Fishers Fran who has intermittent episodes of accented speech. There is a clip of the audio from the video that we took earlier in the week.

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.

Laughter is the Best Medicine, Right?

ellen5e — Tue, 26 May 2009 13:02:46 +0000

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

WHAT IT WAS VS. WHAT IT IS

ellen5e — Fri, 22 May 2009 15:48:00 +0000

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

ellen5e — Tue, 19 May 2009 20:52:00 +0000

I am now back from the hospital and am continuing to have speech problems.

Rather than write everything down… I went to Tokbox and created 4 little video mails that explains everything up to now.

I hope you will watch these so you can view how difficult it is to speak, how very different I sound right now, and because I think God is using this trial to teach many people how God uses the weak and unusual things of this world, if we let Him.

Just click on the links to view the videos:

What Is Going On? Part 1

What Is Going On? Part 2

What Is Going On? Part 3

What Is Going On? Part 4

Now that you have seen these clips you can rejoice with me someday, when God reveals how he using this trial for His glory.

LEARNING A LOT DURING THIS TIME:

1) God IS in control, therefore this is happening for a reason, AND not only for my benefit, but for the benefit of others, and ultimately His glory.

2) This speech problem may be God’s 2×4 across my head – way of getting my attention about being extra careful when choosing words and speaking.

3) A test for vanity: if I am so concerned about how I am sounding when I speak that I get so hung up on how I sound to the other person, then I would not speak at all for prideful fear of looking ridiculous. I am learning it is more important to show that I believe my message is more important to deliver DESPITE the way it makes me look. In this way I can communicate “I love you so very much that I will say it even if it makes me LOOK ridiculous”!

4) Interesting FACT: our dog Spirit obeys my verbal commands even better since I am having this speech problem. I am thinking that maybe it is like everything else; it is the “unusual” that gets our attention. Everyone else’s voices sound similar. But mine is now so unusual that she can easily separate it out of the crowd of other noises in the environment … it is much easier to filter out the racket and see what is really important. Hmmm. I think there is a good analogy there!

5) Patience — I don’t know about you, but I want problems fixed and NOW!! So I have been increasingly hard on myself when it comes to this mess. I am looking at it as: “what did I do wrong?”; “when will this be over?”; ”how can I make it better and faster”. What can I DO??

Lesson I am learning: God is STILL in control (always has been) and if I would quit fighting Him I will be able to rest in the peace that comes with that understanding. It is NOT about what I can or cannot do — (all about ME syndrome) — rather it is again that God is showing me to “be still and know that HE is God”.

6) Faith — so this is another time of growing my faith. I do not like it; it is uncomfortable and an inconvenience not only to me but also to my loved ones.

CONSIDERING THE BUTTERFLY EMERGING FROM COCOON

Did you know that if you were to cut open a cocoon to help the struggling butterfly get out of it’s cocoon, you would actually be doing it harm?? You see that relatively ugly, slimy, can only crawl so far in two whole days little caterpillar gets to go into one of the greatest transformations that I can think of in nature. God transforms this worm into a beautiful flying testimony in the course of a few days. But it is in the struggling that the new butterfly does while in the midst of the cocoon that he builds up his wing strength.

It is during the struggling that the strength is developed! Did you get that!? If you were to feel sorry for this new butterfly and cut open it’s cocoon to ease it’s struggle, or allow it out sooner, even if the butterfly’s wings had fully developed, they would not be strong enough for him to fly upon!! You would only have a more beautiful worm, that LOOKS like a butterfly, but crawls around like a caterpillar. He would be freed from his temporary struggling only to be limited by his unreached potential. How very sad!

Therefore, I am looking at my current neurological and speech trial as just a temporary time of strengthening for me as well. God wishes to transform me into the likeness of His Son Jesus. Although, I do want to get better as soon as possible. I do NOT want let out of the cocoon one second too early. I don’t only want to look like Him, but also be able to have the required strength to act like Him.

If you were blessed by this posting I would love for you to leave a comment. Thanks and may God bless you!

Sensitivity and Numbness.

ellen5e — Tue, 12 May 2009 14:09:00 +0000

It is interesting that God seems to be using “numbness” to teach me “sensitivity”.
Sensitivity to His plans being more important than mine. Submission and asking for advise and help must be used when my own decisions are unpredictable.

My family and close friends know that I’ve been having greater word finding problems as well as poor decision making, memory, org. skills. Now it has escalated to include some other problems that I can’t ignore as being a flare up of Chronic Fatigue.

Yesterday, fatigue was horrible, severe headache and then 4:30ish numbness in lips and rt. side of face, stiffness in neck increased and went from just numbness/tingling thick feeling to sometimes burning.

This morning, I woke up to spreading of numbness down my rt arm.
RATS! God really wants my attention here I think.

I’ve just finished wrestling with myself to submit to God’s plan of not relying on my own understanding, which is clearly failing when decision making is so cruddy. I sought outside advise. It actually looks like I’m going to have to do the unthinkable and forego my fun plans for this glorious sunny day to plant and do gardening with my daughter. I was really looking forward to that more than you know. Instead wisdom says I need to go to ER.

I’m pretty bummed about that, but it is the “right” thing to do. I must be able to rule out stroke vs. just some kind of pinched or inflamed nerves. My family dr. said it’s up to me whether I go into ER or not! Thanks for no help there Doc. Seriously, he said he couldn’t diagnose over the phone, but nurse recommends that since its involving mental stuff, probably not just a pinched nerve. So she suggests I go ahead and go into the ER.

Other friend said better go in cuz no matter what, something is definitely wrong..

So I must forgo one of my favorite activities to go sit for hours in ER. Grrr!
Please pray for the situation. Tho’ I’m not happy about this, I can do nothing but what I believe to be right and trust that I am in God’s loving care no matter what.

My Title of this blog post is a great start off for a spiritual illustration that is brewing in my mind, but I am afraid that it will have to wait; I’m going to the ER now.

ellen5e.com » rare

Six Months with Foreign Accent Syndrome and counting

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