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
Crashed and Turned
Some of you will have already heard about this, but since today is the anniversary date of a major life-altering event, I decided to reblog it.
September 17, 1987 is a special date on the calendar for me. You see, it was 22 years ago today that my life took a major hit. While driving our Kawasaki 550 motorcycle I was broadsided by the car of a young lady performing an illegal U-turn. My life as I had known it (had planned) would never be the same.
It was just before the impact and I was waiting for morning rush hour traffic to clear from one of the two major one-way streets located at the end of my commute to work in beautiful Santa Barbara, California. I knew that I had to wait a few moments more before the traffic cleared. So I took the opportunity to shoot up a praise to God. “What a gorgeous morning it is Father. There is not a single cloud in the sky.” Additionally I am going to be early for work, and I am excelling at my job.
Looking back on that moment now, I realize that was the last minute in which I had no chronic pain in my life. I really do forget what that felt like. Perhaps God answered me with ” Oh sure, you think it’s beautiful and hunky dory now, but let’s just see what you think in a minute.” I believe that in Heaven, God was gathering the angels to watch what was going to happen next.
After crossing the intersection, I noticed that a car traveling in the opposite direction quickly pulled along the opposite curb as it going to park. But then it happened. The sudden impact broadsided me full force as the black bumper of the Civic instantly crushed my Left Ankle. I found myself startled (WHAT just happened), in great pain as my foot was hit by the car then pushed off the peg, and dragging along the pavement. On top of all that, my head was wizzing by the bumpers of cars parked on my side of the street as I was still moving forward although at an angle of a track bike (like the GT racers we just saw here in Indy).
I jerked with all my might to keep from going down. All the while it occurred to me that I am now driving on the wrong side of the street (from jerking up), my foots dragging, and I must stop in just a few yards BEFORE I enter the intersection with the other major one-way street. AAAAAAH!
This is where I testify to the miracle on my motorcycle. God was at work greatly in my life. He got me to stop the motorcycle before getting hit again. I did NOT go down even though broadsided. I think part of the credit for that goes to the fact that I raced bicycles at Major Taylor Velodrome and in racing class and training we would purposefully jam our bicycles into each other to learn how to avoid wrecks and react to unexpected pedal in your spokes.
Once I had managed to stop the forward movement of the cycle, I was standing there with both hand squeezing the calipers on the handlebar (clutch and brake). I was managing to stay balanced on my one right leg, but it was heavy and my other foot was mangled. What was worse is that I couldn’t shift the cycle into neutral because it would have been done by my useless left foot. I was stuck there!!
Just then, a VERY pregnant woman came up the sidewalk to help me. I remember thinking that the gutteral screams that came out of me were not very feminine (surprised that I sounded like a guy) and that I could even scare her away if I didn’t quiet them.
She came up to me and saw that I had a problem, but couldn’t hear me very well through the running of the motorcycle and due to the fact that the visor of my full face helmet was down. So she was fumbling around trying to undo my helmet. I swallowed all screams of pain and yelled, “PUT… the KICKSTAND…. DOWN!” Once she did that, I killed the bike by turning off the key with the assurance of the kickstand there to keep me from falling over.
I took off my helmet and looked down at my foot. It looked like the ends of two of my toes were missing and I knew that my ankle foot was broken. The lady had called the police and ambulance and wanted to help me to the sidewalk. I initially declined since she looked like she would deliver her baby if she lifted half of my weight. However the incessant throbbing convinced me that I should accept her offer.
We managed to get me to the sidewalk, a couple of very painful steps, and then I was down. Only then did I see that the only damage to the motorcycle was to the left case guard that helps protect the engine… a $50 part!! Another miracle.
Yes, God saw to it that I did not go down, that I had NO other damage to my body other than my left knee, leg, ankle and foot. Do you realize that if I had gone down I wouldn’t have been able to even use crutches?
May I just say something about crutches. When I am using them I get the “oh, you poor thing” look from everyone. Others using crutches say, ‘don’t you just HATE having to use crutches?” My answer is a resounding “NO.” I love these crutches. This is the original pair and if they had an odometer on them it would have tripped over the 100,000 mile mark about three times. I don’t know what I would have done without them.
When I am on crutches I can really move!! Just ask my friends. Unfortunately, right now I am recovering from a shoulder injury and can’t use them yet. So I appreciate them all the more, because without their use I am much more limited. Still I do have the famous “black boot” that I can throw on when I am expecting to be “slammin’” (on my feet or walking a lot). Again, I get the looks and the questions “what happened, did you have another surgery?”
I know that people are generally caring and tend to think that injuries are supposed to get better. But the sad fact is that some of us are never going to recover from our injuries. Not in this lifetime anyway. These appliances (crutches, canes, boots, funny shoes) are just our ways to cope in the meantime. To try to live a productive life in spite of the physical challenges.
I now joke that I have been through probably about a dozen sets of guardian angels. They draw lots up there to NOT have to get me as a client.
Almost half of my life has now been in constant pain.
As a competitive long distance runner I used to just push through the pain. No pain, no gain, right? Maybe so, but you will notice that I don’t run anymore. I can’t. If it’s an emergency or something I can lope along with the understanding that I will have to pay a physical price. I’ll be “lame” for a few days, and have to go back to using my crutches.
Worse than that, I often don’t realize that I’m overdoing until after it is too late. Again because my way of dealing with pain was to mentally ’shove it aside’, I use a kind of self-hypnosis that worked well for me as an athlete, but that can do damage to me now.
Since I am allergic to almost all pain medicines, I can take none. So I really am in constant pain every moment I am awake. But there are a couple of coping skills that I have learned that work for me. Music is the biggest one. When I sing or play, it is a painkiller for me. It helps that I like to sing praises to God with our church worship team and jam on mandolin and guitar with friends. That’s why you’ll hear me turn almost any sentence into the lyric and break out into song.
Another painkiller is laughter. My friends help me with this one. Laughter is the best medicine is tried and true. I know that depression is just a natural outcome when someone is dealing with chronic anything. There are chemical things happening in the brain with seratonin and endorphins and such. Since I am unable to be as physically active as I was as an athlete it’s even more important that I laugh. Like exercise, laughter increases the endorphins; the body’s natural pain killers.
So that is why when you first meet me you may think that I am very silly. I am learning to roll with the punches and not take things too seriously. I realize that things could ALWAYS be worse. And, in many people’s cases, they are. However, I also realize that no matter what happens it is all under God’s control.
Let God be God: get out of the way.
So my plans to be a nurse practitioner were trashed, as were the ability to participate in a lot of the exercises and sports competitions that I enjoyed. Now I have a permanent disability that prevents me from enjoying the life I wanted to live. Besides the walking, standing, foot down time and distance limitations, I have the physical drain of the constant pain. Think about it, when you are in pain you get tired more easily, don’t you. I think part of that is from swallowing down the pain, not expressing it through some means. The other problem is the emotional drain. Frustration of not being able to do what I once did, it’s never going to get better than this, the extra time that adaptability methods require. It just takes more time to do things.
For me, with my bent toward perfectionism, I need to get rid of the “would have,” “could have,” “should have” statements. It just is what it is. I am not God. I am learning more and more the importance of the Serenity Prayer:
“God, grant me the Serenity to accept the things that I cannot change [past, not in my control], Courage to change the things I can [focus on what I CAN do, and learn new ways to adapt], and the Wisdom to know the difference.”
Over the last 21 years, I have learned a lot. I would not have chosen these events. But I now see where God was in control the entire time. “I know the plans I have for you…. plans for hope and a future,” is what God tells me in Isaiah. It is not the path that I would have willingly chosen for myself… motorcycle crash, crushed leg, 31 surgeries, pain and disappointments…. “sure, sign me up.” Nonetheless, I am blessed beyond measure. I have become a stronger person who is learning to take my value less from what I do and more for Who’s I am.
I joke about the fact that with so many surgeries and stuff, the guardian angels have to draw lots in hopes of not getting me as an assignment. I’m sure I have worn out at least a dozen sets. I know that like Paul, God has allowed me to be molded through trials. That if I hadn’t had all this happen TO me, because He cares FOR me, I would probably have been a prideful, arrogant, competitive jerk. So when the trumpet sounds, get ready to eat my dust… cause I’m going to be running into glory!
==== Today I am celebrating the fact that though this event was traumatic, it began a new direction in my life. A major turn for what I Biblically believe is guananteed to be for the better.
Growing Chocolates
Hmmm… I just got a great inspiration from friends Jamie and Terri talking on the radio. They were listing their top five things that they think they spend too much money on. Chocolate!! Why do chocolates cost so much? Because we can’t grow our own.
That got my imagination moving into overdrive. Wonder if we could grow our own chocolates? Wouldn’t that be great? Come on ladies, are you with me here? Imagine with me just for fun.
You’d take your seeds of Nestle (TM) Toll House Semi-Sweet Chocolate Chips and place them in a shallow furrow of prepared earth. Of course once you’d placed the seeds in the ground you would carefully mark the row with a dusting line of white powdered sugar so that you could consistently “water” for best production. And we would fertilize with Hershey’s (TM) Cocoa Powder every two weeks for increased flavor.
Naturally, we would not use real H2O. Oh no! We would be “watering” with Hersheys (TM) Dark Chocolate Syrup. We must water at least twice a day until the seedlings start to sprout to a height of two inches when we would thin the row to ensure larger healthier plants. Just go ahead and eat those little seedlings, they are delicious and full of fiber and NO calories. I only grow the best, guilt free variety, you know.
Is your mouth watering yet? As maturation takes place it is important to watch for unwanted weeds like those pesky rice crunchies and invasive almonds. Oh no you don’t!! This is a pure, rich, melt in your mouth, smooth crop of chocolate we are working on here. Pull those invasives from the roots and chuck them outta there!
Now, remember, our chocolate plants are a “cool weather” crop. Trying to grow them in the months of July and August can easily result in a sticky, melty mess. Fortunately, the chocolate plants are unattractive to the Japanese beetles and slugs that take out so much of the rest of the garden. So, I say, let’s forget about the lettuce and the brocolli and grow ONLY chocolate with a few tomatoes, sweet corn and melons filling in during the hot months.
The nice thing about growing my imaginary chocolate plants is the idea of strolling out into my garden and eating fresh from the garden!! YOU know what I mean. When the true farmer strolls out into the garden to bring in a harvest, one of the perks of the job is eating some of the crop before it even hits the harvesting basket! Oooooh, la la!
Now, dear friends, you know that God chose to start man’s life in a garden. You tell me… what more heavenly garden can there be than a garden full of chocolate? Thanks for coming on this little diversion in divinity with me, it’s always good to share. Anybody else having a chocolate craving?
Space Crazy
As the world celebrates today as the 4oth Anniversary of Apollo 11’s first man to land on the moon, I have slipped into
some nostalgic thoughts. July 20, 1969: I was 7 years old and my parents took us on our summer vacation to a provincial park in Canada where we stayed in the first cabin camping that I can remember.
On the night of the lunar landing, we kids looked up at the moon like we would be able to see the astronauts that everyone said were circling the moon and going to land on it. The thought of a man landing on the moon in the sky is hard for a little seven year old to comprehend.
We kids were sound asleep when my father came into our bedroom and carried us in our PJs to the main lodge house to watch the landing on a little black and white TV. For us young one’s any occasion that let us be awake in the middle of the night was memorable. Dad hauled us to the TV so that we could watch history happen. It was so cool.
Along with the actual event itself, was the dawning of an Apollo era of memories. Most memorable of them was the introduction of Tang as the Space Drink and there were the famous Space Food Sticks (I preferred the peanut butter flavor). Here is a link to that Space Food Sticks.
There was also a series of rather attractive glasses that we collected by filling up the car at the local filling station. Mom collected all the set of Apollo glasses. : ) Wow, what memories. What do you remember?
Sounds Like?— a Lot of Work
Today was a special day for me; I officially began speech therapy. It has been two months exactly since my speaking voice has changed from my normal Midwest farmer’s daughter dialect to one that sounds clearly like that of a foreigner trying to speak English.
Though I had my initial analysis with the speech therapy department on May 20th, they had only the original neurologist’s diagnosis of “disarthria,” which is just an official word for “slurred speech” often caused by a neurological problem in mechanically producing the sounds. However, my speech is not really slurred as much as “accented”.
My therapist today said that we will focus on identifying which sounds I am getting wrong and then correcting those sounds. She told me that I seemed to be doing a fairly good job of “catching myself” producing the incorrect sounds. There are just so very many sound combinations that are not coming out properly in my everyday speech that it is a LOT of work.
One of the sounds that I know I have a great deal of trouble with is the “TH” sound. The words “there or their”, “mother or father” are mispronounced as “Dar, mudder, and fadder.” That TH is a killer for me. When I try to slow down and really make my mouth form the sound it causes my tongue to tickle my lower teeth and lips together. It feels like when we used to make that kazoo sound by using a comb and a piece of paper OR when we took a very thick blade of grass held just-so in our cupped hands and blowing to produce that incredible buzzing sound like a kazoo.
Though I have spent the last two months working on putting the long A’s into words like table and baby. Now, the real work begins as I carry around a notebook and notate as many mispronounced words as I can. This phonetic journal should help me identify some of the biggest problems that I am having in accented speech. It is just that there are so very many accented words in my normal speech, that I get a bit discouraged as I wonder if I’ll be able to work my way back to my regular voice.
I got excited when my speech therapist said that she had worked with a lot of people with foreign accents… I suddenly felt like this was something I was not so alone in. However, then she corrected my thinking. These foreign speakers were actually from that other country, not like me. Unlike the Japanese lady that my therapist was able to help with r’s and l’s; my dialect is not from any one language so we don’t have the typical pointers like if you are from Sweden then you have very strong UU’s or French has a very nasal and broad A. My accent is literally “all over the map”.
So. . . where to begin? One word at a time. I remember two months ago when I first came out of the hospital I couldn’t say “yesterday,” without hitting hard brick walls between each syllable. Now, it is still somewhat slower that my old voice, but I have gotten that word to come out more naturally. One little victory with hopefully many more to come.
WIBC interview June 23rd
Here is the audio for the interview with WIBC 93.1 FM’s Big Joe and Terri Stacey for this week. 
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.