How Do You Say It?

The weekend was full of activities, and a lot of it was spent with family and friends of family that I had not seen in years. All these relatives and friends were at two different big celebrations held over in both Michigan and Northern Indiana.

All but one set of relatives have never heard me speaking with the foreign accent that had suddenly came upon me on May 12th.
So imagine for a moment if you were me; how would you handle the attempted explanation of the inevitable questions “what happened to your voice?” “Why are you talking that way,” and from the less familiar relatives and friends “where are you from?”

There is no easy way to explain it. There is a rare disorder called Foreign Accent Syndrome and it causes me to speak with a foreign accent. I did manage to tell groups at a time while we sat together after eating. Although that helped cut down on the number of repeated explanations, I still became very tired of explaining something that is so hard to explain.

It all boils down to the fact that we don’t know exactly why it happened, or if I will get my regular voice back. However, in the meantime we are pressing on with investigations and tests to try to gain a better scientific understanding of how the brain works in relation to speech.

Still, it is fascinating and the listeners dropped their jaws when I sang a little bit for them in my regular voice. Then we had a good conversation about our bodies being fearfully and wonderfully made. What about attitude? We talked about how we don’t gain anything by worrying or fretting about something that we do not have any control over. Then I was able to talk about my faith in knowing that God remains in control of it all. That is how I truthfully am able to do as well emotionally as I have been.

I explained that I can have “joy” even in the midst of a trial. While I may not be “happy” about it, I can have times of laughter with others as we note the funny pronunciations of American English. Some mispronunciations make a normal saying sound even more funny. We can laugh together! I have been told by many people that it is the laughter that allows them to ask me more questions without feeling uncomfortable about it.

That brings me back to the conversation with them about what to say when I am asked so many times a day, “Where are you from?” I always answer, “where do you think? I seriously would like to know, because we are taking a poll.” Most people then apologize and express they are afraid to guess wrong. I tell them they cannot guess wrong, and that I will explain it after they guess. Then the people are more at ease and will play the game.

Here is how the poll is going this week:
1) English/Australian
2) Swedish
3) French
4) Some form of Slovick
5) And this week I have been getting repeated “South African” and even a specific “Rhodesia” and 6) one Portuguese.

Although there hasn’t been a clear winner as to which accent I am speaking, it is clear that it is a foreign one. The easiest way to describe it is the sound of a foreign born European coming to the United States and trying to speak English.

Making Waves with an EEG

I recently underwent another medical test known as an electroencephalogram (EEG) which is a noninvasive test used to evaluate brain function or disorders.

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!

FAS Friends

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.

A Bird in the Hand Not Worth the Fall!

I am going to tell you the tale of yet another unfortunate event in my life. I think you will agree that I have more lives than a herd of cats.

The chicken was almost done in the oven when Steve arrived home from work. I glanced behind him standing at the sliding glass patio door into our backyard. There I saw a threatening sight; a dozen robbins were flying in and out of our Northern Star dwarf cherry tree. “Hey, get out of there!” I yelled at the winged thieves, “those cherries are almost ripe!”

The next few moments I was in a whirlwind as I grabbed a tree cover, some clothes pins and the step ladder to quickly cover the tree before the supper was done cooking. It would only take a few minutes, and then the little bandits would be at least deterred from depleting the ingredients for our future cherry pies.

Because of the metal rod in my left leg and fused ankle, I was barefoot to make sure that foot placement was solid and centered on the nice wide treads of the step-ladder. I had just finished attaching the half way point of the cover. When, suddenly, I was slammed into the ground.

There I was, face down in the lawn, trying to assess what just happened. My bell was rung! You could say I was seeing birds of a different variety now… the kind that join the stars around your head when you are hurt badly.  I had apparently hurt my left side pretty badly, the ladder was contorted on the ground beside and beneath me, big bruise to the left thigh (that’s gonna be ugly), wrist, arm, shoulder all hurting from the fall, but then I saw my left foot… it was bleeding badly. Because my left ankle does not flex AT ALL, and the little toes on that foot curve under so badly, one of the toes evidently caught an edge that hyper extended it to the point of ripping or cutting the flesh as it came in contact with the hard metal.

“I am hurt”… correction, “I am hurt badly” and “I gotta get into the house NOW” were the words coming out of me as I limped toward the door as fast as I could. I grabbed the dishpan full of cold water that we keep right inside the door for cleaning the dog’s feet when she comes inside and was happy that I had just recently cleaned it well and that it was full of cold water. I stuck my foot right in there and watched the water turning dark red. It was like a scene out of the movie “The Ten Commandments”.

I called Steve into the kitchen, he was mad as he ran to get the first aid kit. Then I called in our daughter Michelle to get some ice on these big bruises.  Then Steve doctored me up by pouring Hydrogen peroxide over my bleeding foot that was now up and over the edge of the kitchen table. It really hurt a lot as he straightened those little toes to get it clean in there.

I believe I lost consciousness for a tiny bit shortly after saying “I feel very dizzy … sick … not good.” I was sitting in a tall backed kitchen chair and rocking my head with the pain. That is something I do naturally rather than cry. However, I came too suddenly as Michelle was straightening up my head and trying to put a pillow behind it. As I was coming to, I realized that I was blowing out the pain and drooling, kind-of spitting up. Woah! I guess I am hurt worse than I thought.  There was no way I was going to be able to drink the water Michelle was offering me. “No” was my answer to her offering me some Aleve pain killer. I do NOT want to thin my blood any more or make the bruising worse.

After Steve packed the cut with topical antibiotic and pressure of gauze and tape. They helped me get situated in the living room recliner for the night.  Foot elevated, cleaned, bandaged, taped and now enjooying the comfort of pressurized ice water inside my cryocuff.  Ice bag ace-bandaged to the giant bruise on my left thigh. AND I wrapped another little bag of ice over my left wrist and hand which I have at least badly sprained.  I elevated that up against my chest as I laid my head back against the chair with a very cold wet towel behind my neck to ease the neck/head pain and nausea.

I am in PAIN!!  I did NOT go to the ER… we were doing about everything they would do anyway.  Plus, I have had more than my fill of emergency rooms and hospitals lately.  I did call my family doctor today and have an appointment to see him tomorrow just because this was such a bad fall and did a lot of damage. Plus, I may need to get put on some antibiotics for that deep tear/cut at the base of my toe.

You know, if I didn’t know better, I’d say I was cursed!! If I had been careless it would have been one thing, but I took several safety precautions as I endeavored to save our cherry crop. Who could plan on the old ladder just decideing to break. The greatest safety tip I tell everyone is NEVER EVER climb a ladder or swim when there is no one else around. This time that safety tip surely saved me big time.

Moral of this story:  “A bird in the hand (or prevented from your cherries) may NOT be worth it!!”

Prayer requests: for those of you who follow me regularly, (1) Pain to ease (2) I have an EEG already scheduled at the hospital for Friday (3) I cannot use my crutches to stay off my left foot to heal because my left wrist and shoulder and collar bone area are all swollen/bruised.

After all of this, I was a bit upset to see that my husband took down the cover net I had already placed halfway on the tree. So the robins have free rain of my cherries again : (  Oh well, they need to eat too I guess.

Let’s Get Serious

We are fast approaching a month since I first had this strange accented voice coming out of me during normal speaking times. And yet, there has been very little “medical diagnostic” progress.  Since being discharged from the hospital I have been to one appointment with a speech therapist, and another appointment with a new neurologist. Both of these professionals had never even heard of Foreign Accent Syndrome before. Likewise, both of these occasions had people believing that I was simply a foreigner speaking English with a foreign accent? “Where are you from?”

But it was when the new neurologist asked me, “so why are you here?” that I became the most frustrated.  These new doctors who had not known me before the affliction, do not truly grasp the severity of my problem. At least the new neurologist entertained my theory on the matter and took the material I had printed off about F.A.S.  He almost seemed to dismiss it though in statements that were similar to “but you did not suffer severe head trama,” as a precursor to the malady.  I pointed out that there was one case in particular where a woman had IDENTICAL symptoms in regard to right facial numbness and even down her right arm and hand prior to her diagnosis with F.A.S..

Upon leaving the neurologists office, he had provided me with some links to such organizations as N.I.H. (National Institute of Health) and also set me up for an E.E.G. to be conducted on Friday June 12th.  Otherwise, I’m not coming back to see him until 4 to 6 more weeks.

In the meantime, I try to remain upbeat and humorous. However, it IS difficult as I struggle to say some words that don’t get along with this heavy accent. Also I notice that the speech pattern and order (way in which words are put together: nouns, verbs, adverbs etc.) and unexpected inflections and stresses are placed in the words or sentences as I speak. If I think about catching all the “errors” I get a headache!! So, a lot of times I just allow myself to “sound funny”.

I’m getting the feeling that many doctors are not getting seriously proactive about getting to the bottom of what is going on because they don’t appreciate the profound difference it has made in my life. Many of the newer doctors and nurses were basically strangers to me before now and so do not know the “real me”.

So, I made an appointment with our family doctor Dr. Patterson. The medical office manager noticed my accent right away. Nicole was also the first person I called when I first woke up with the numbness spreading down my right arm almost a month ago. She is the one who talked to Dr. Patterson and then told me that he wouldn’t be able to see me in the office that day and would not be able to diagnose me over the phone so to “go to the Emergency room if you want to.”  It’s a good thing I did.  Although, that CT scan did not show a stroke, the ER dept. did notate some of the early symptoms and timeline right as it was happening to me. That was the Methodist ER on Tuesday, May 12th.

It was the delay of not going to be able to see anyone before Friday along with my new speech difficulties that prompted my Chronic Pain Group friends to assist me in getting to the Clarion West Hospital ER on Wednesday and then I was admitted for two days.  Final diagnosis after a second CT and an MRI, “slurred speech of unknown origin”. Dismissed with instructions to follow up with a new neurologist and outpatient speech therapist.

Back to the more recent past: last Friday Dr. Patterson talked with me and was shaking his head in disbelief as well as all of my friends. It is profound! This strong accent just isn’t ‘me’.  Yet everyone says, “at least you have a charming accent. I rather like it. I wish I had such a lovely accent.” I know they mean well, and it is something that I am grateful for, however, I want to know ‘why’ and for ‘how long’ and these kind of things.

In the meantime, I am scouring the internet and growing my research file of articles and names. Names of fellow sufferers and the details of their stories, names of doctors, neurologists, speech pathologists, specialists of all kinds and areas of expertise. Above all, I am looking for contact information. I very much believe that what is going on within my brain is a benefit for research into brain function or malfunction as it may be.

Above all else, I am fighting to endure the voice that isn’t really me. To make it pronounce the words more correctly, or leave out all the ‘ah’s” that sneak in between words of a sentence. To shorten those incredibly strong and long “U”s that make so much of the sentence sound Swedish.  This week I have managed to finally be able to say “yesterday” without flat-0ut stopping between each and every syllable. I simply have to swallow back the “er” sound that wants to be so pronounced with stress. For you it may look like “yes-sird-aey”. You would not believe the effort it took me a week to get this down, and I still sometimes get hung on it a bit. At this point I am not scheduled for any other speech therapy. I am making these corrections with the help of my very patient 19 year-old daughter and saintly husband.

So far my trying to contact others via email or linking to this website in an attempt to aggregate the information into one place, have failed to produce a connection to constructive help. I do see that the once a week segment that I’ve been doing with WIBC 93.1 FM on Tuesday mornings at 7:45 a.m. ET have been impacting others.

That is an answer to prayer! If I must go through this. AND I or any of my doctors know “why” . . . then at least, I can marvel at the peculiarity of the situation… and laugh at the funny accent that is not my own… right along with them I will laugh and marvel. Because, when I am doing this, I am not alone and there is not sorrow.  There is fellowship in suffering, in facing the unknown with the faith and hope that comes from knowing that God is and always has been in control.

I believe that none of this time is wasted. However, I do want to get movin’ here. It’s time!! Let’s get serious about gleaning what information we can medically obtain from this event. Can there be some therapy to help ease the strain of trying to correct the speech so much of the time? Would we learn some valuable information from a functional MRI and PET scan. I am certain that there is something profound happening within my brain in different places, because my singing voice is MY voice, not the accented speaking one.

In any case…finally, this week… I am seeing a glimmer of hope that at least one, maybe two doctors are taking my problem seriously and are actually going to help “light a fire” of some kind of action to help me do something productive in regard to this thing.

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