What I am seeing now is another wave of people learning of Foreign Accent Syndrome for the first time. It has been over sixteen months since my adventures into the world of a foreign sounding person started. I had so hoped that my speech would have returned as quickly and magically as it had changed. But No! I’m still having to think very hard when I speak to correct such things as “what you are looking for?” when I ask my husband what he is searching for. I make myself “fix” things, because I don’t won’t to have them get worse.

The word “people” still wants to come out “Pee-pools” and lately I’ve had a very difficult time saying “wolf”. The long “A” sound is always a tough one especially at the beginning of a word.  The word “yes-ter-day” was one of the very first words to give me repeated trouble in pronunciation as it sounds like I am slamming a stop in between each syllable…but I don’t seem to be able to smooth it out. Grr!  Then there’s probably one of the kid’s favorites… “Dar”….. as in “their dog” or “it’s over there” … only it comes out dahr.

Sorry for the side note of frustration, but as I see the Autumn leaves preparing for winter and hard times ahead, I am also in dread. My husband has been out of work from a job he had for 16 years and our income and benefits are drastically changing because of it. That means that I am even more likely to have to continue suffering on my own without any help to try and make things better.

You see it’s not just accented speech. It’s all the effort that goes into trying to correct the sounds and place the words in the proper order and put the stress and rhythm in the right place on TOP of the scrutiny I receive for sounding so profoundly different.

Here is  a link to a current article making the internet buz with comment on FAS   http://pagingdrgupta.blogs.cnn.com/2010/09/20/when-brain-damage-makes-you-sound-foreign/?hpt=T2

As I see these people commenting on articles that they’ve just seen about Foreign Accent Syndrome, some people are genuinely shocked or intrigued. However, there are so very many who comment cruelly on the misfortune of others, saying it’s fake or a ploy for attention, or they wish they could sound a certain way like that. Oh my!

I want so very much to connect with other scientists, sufferers, speech pathologists, but I am out of resources. I am relying on my writing, the internets reach, networking and the power of prayer to try to get something positive done before a long, cold, depressing winter sets in.

I invite you to look around on this website for other articles with the tag “fas”. In particular I posted one called “WHAT IT WAS VS. WHAT IT IS“.  Many of these posts have links In which you will hear for yourself what a profound change took place in my voice within two days time.

So the question remains; what can we do? I am one who would gladly subject myself to testing for the benefit of scientific understanding, but have no insurance, research or other monies to do so… even if a doctor or university jumped on the chance to study the phenomena. Being a formerly pre-medical and now freelance graphic artist communicator, I am a trained observer so I have tons of useful data, but what authority will gather and effectively use it for the greatest benefit?  What CAN we do?

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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

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Here is the interview: 09-0728-WIBC-no07-sm

Basically they recapped a bit for those who had never heard me speak on the radio before and also talked a bit about the brown recluse spider bite I received recently. The funniest part of the interview was the very beginnning before I was even put on live with them. Joe was frantically trying to put back together Terri’s microphone which had a missing screw. I was cracking up!! Terri had a screw loose. Imagine?!

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Electrodes were attached to my scalp with a special gel or paste. This made for a VERY BAD HAIR DAY… it took forever to get that goop out of my hair. These electrodes recorded my brain’s electrical activity and transmitted impulses to an electroencephalograph, which magnified them and recorded them as brain waves on moving strips of paper. I was asked to close my eyes and be still for most of the test, so it was a semi-rest period for me. However, it was hard to keep my eyes closed when I wanted to open them up to see what was going on.  A strobe light was used for a portion of the test, and it created interesting colors or spinning patterns while my eyes were closed.  Although most of the test was routine. Something of great note to me happened.

The young lady who was administering my EEG interviewed me about what kind of problems I have been having. When she asked me the inevitable “Where are you from” question, I let her try to guess and then asked her if she’d heard of Foreign Accent Syndrome. No, she had not heard of it. I further confounded her when I showed her that I could sing with my “real” voice.

When the test was almost done, this young lady who had so painstakingly wired me up to all these electrodes all over my scalp did something unique. She asked me to go ahead and sing a verse of “You Are My Sunshine” (the song I had sung to her before the test began) AND THEN to just speak the same words to that verse. As I heard myself singing and then saying the words my emotions got the better of me. Just as I said “please don’t take my sunshine away,” I began to bawl like a baby!!

I think part of the reason I was so emotional is that I really heard how drastic a difference there is between my real voice singing and then the foreign accented saying of the exact same words. However, I believe the biggest reason I cried was because I realized something.  This technician had really “heard” me. She noticed how much I believed that something could record the difference between the two modes and that I believed concretely that the singing and the speech are coming from two different places in my brain! I believe this may be the first time such a thing is recorded scientifically, in black and white, ink and paper, proven. Maybe history is being made.

This technician not only listened to what I had to say, but DID something about it. She recorded with the EEG the exact thing I had been talking about.  When I asked the lady if this was a normal part of the test she answered, “No, I just decided to do that because of what you had told and shown me.”  History — history was made.  Not only have I demonstrated via audio, or video, NOW they have EEG waves recorded of this interesting phenomena.

I can hardly wait to see my neurologist on July 1st to get the results. There is surely something recorded on that tape of brain waves to help us understand exactly what is going on in the brain. Now, we are getting somewhere, “making waves,”  and it feels good!

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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.

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The last few days have been really tough. I always have chronic pain, so I usually have a pretty high pain threshold. However, this latest surgery has ground me down more than any previous. Since I have had extra time awake in the middle of the night, I have used the time for closer examination of this phenomena. Why is this time so different?

Almost all of the other 39 surgeries have involved my LEFT ankle, foot, leg, knee. As a result I have gotten very good at making left-favoring body accommodations. While favoring my left side, I balance and make micro adjustments with my right side of my body, where there are no fusions or limitations to keep me from doing so.

Here is the crux of the problem. Now, that the RIGHT foot had to be operated on due to biomechanical changes resulting from all that unnatural gaiting and balancing, the LEFT foot simply cannot offer the same kind of support to the right, as the right has done for the left. It doesn’t seem fair, does it?

I can hear my right foot now. “Oh sure, I’m there standing right beside you for all those dozens of surgeries, picking up your slack; supporting you. Then, the ONE time I need a little help, you wimp out on me! What’s up with that?!” lol

It is by trying to play peacemaker to these two feet of mine that I learn that I have been just as guilty of not understanding the true nature of the problem. It is so easy to “blame” someone else, or to take on false guilt myself. I “should” be doing more. I “must’ve” done something wrong. Nope, I must examine what is really “true.” What is that?

These are the facts: 21 years ago I was struck by a car which changed the direction of my physical capabilities forever. There are things that I will NEVER be able to do again on this earth. There are things that I dreamed of doing, that I will never get to do, period. The sooner I face those facts, the better.

Because I am allergic to all the pain meds that most people can take for relief, I am not able to receive the relief from Chronic pain that many people have come to expect from modern medicine. Though I feel entitled, the fact is, I am not. This “thorn in my flesh” is mine. God only knows why. But, whatever the reason, I do trust Him. In a sick kind of way, I am honored. For God’s Word says that He will never give us more than we can endure. He has a whole lot more faith in my abilities than I do.

I’ve just returned from the follow-up appointment with the surgeon. Dr. Karl Raynor explained to my husband and I exactly what he did in there. He also showed us the x-rays. There is a bunch of swelling and bruising, but no infection. YEAH!

Recovery is underway. It will take some time, but I will get through it and be stronger on the other side. But, for now, it’s just one step at a time on this journey of life.

If you click HERE you will see more photos of the foot up close and they are not for weak stomachs.

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This was the easiest surgery I’ve ever had on my leg. Dr. Karl Raynor went in and removed 2″ from my left distal fibula (smaller lower leg bone) and the internal bone stimulator that was placed in there when my ankle was totally fused in May of 2006.

You can see the wires sticking out of where the devise had been. See that sharp bone sticking out of the back of the leg? That is the place to which my fibula was cut this time (where some tendon attach). It was about 2″ longer but had grown toward the tibia to try to make a pseudo-joint which was causing unbearable bone pain for me.

The wires from the bone stim were wrapped around the ankle area along with some bone removed from my fibula to help attain a solid fusion. Though the bone stim is supposed to stimulate bone growth in the area where the wires are located, apparently some EMFs encouraged some bone growth at the end of my fibula that we didn’t want.

You can see that I have a metal rod and a couple of long screws that bind things together. It looks rather robotic on xray, but kind of nasty in real life. I have a crookedy lower left leg with no outer ankle protrusion at all. It’s flat and majorly scarred.

Still . . . I have my own leg and foot. I even have most of my sensory nerve functions so that I feel thing with that foot which is amazing given all that it’s been through.

I joke with people who can’t believe how many surgeries I’ve survived by saying, ” When God does finally take me home, it will probably be from an infection from a paper cut or something small like that.”

Seriously, the prayers of my friends have helped sustain me through everything. It is especially important since I am allergic to all the main pain medications.

I went into surgery at about 11 a.m.. My nurse’s name was also Ellen (43 y.o.) and she also likes to long distance run. Therefore she understood when I said I take the pain and push it aside like when you are waiting for your “second wind”. Still the different people including the anesthesiologist found it hard to believe that I was not taking anything for the intense pain.

I came out of surgery in record time and was very talkative even before I could open my eyes. I heard Dr. Summers (the anesthesiologist) check on me before he left. I asked him to please give us some “Summer” weather. It was a bad joke, but he laughed anyway.

At 1 p.m. I was home in my own bed! The nerve block that they gave me in surgery worked so well that I felt no bone pain, just sharp cut of the incision. The On-Q Pain med ball was in place to drip Marcaine right into the surgical site, and was a godsend for the three days it worked!

With my leg elevated in the wheelchair, I am finally able to get back to my computer to catch up (if that’s EVEN possible) with all the things I need to attend to. [Yes, I ended that sentence with a preposition because that's how I would speak naturally].

Currently, I am using lydocaine pain patches next to the incision for 12 hours a day to help with the pain. I am to be non-weightbearing until at least Monday when I get the stitches out.

The most frustrating thing is that I can’t do housework that I want, cook supper, or be much help around here. AND I am lonely, since I am unable to go out just yet. Thank God for phone calls and book reading, cause there’s hardly anything worth watching on TV.

Well, I’m gonna call it quits for this post. I’ll just be “kickin’ back” and recovering for a bit.

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