Foreign Accent Syndrome: Important Steps Forward

Yesterday was a GREAT DAY for those of us who suffer from Foreign Accent Syndrome, the people that love them, the medical community and the population in general. Yesterday, September 3, 2013 was the long-awaited day of the airing of a documentary on Foreign Accent Syndrome that involved two of my best Foreign Accent Syndrome friends! It aired on BBC-One TV in the late evening in the World Time Zone 0 (England). Although it was available to be viewed on the BBC viewer in a few other countries, the United States was not one of them. 🙁

However, I was monitoring Twitter while my mates across the “Big Pond” were watching the documentary. Twitter was alive with postings about people hearing of Foreign Accent Syndrome for the first time. YES!! Praise the Lord! That is one of my dreams for a better world: people actually learn of something new to them so that they can show compassion in new ways. AND especially  for those  people with foreign accent syndrome (hereafter abbreviated PWFAS): when they see it being broadcast around the world in a professionally executed documentary, they suddenly realize they are not alone.

I learned today that BBC Documentary (God bless them) placed a full version of the documentary on YouTube — I will place a link at the end of this post.

I was so  excited the night before when I watched a video of a teaser clip from the documentary. I saw and heard my friends Sarah Colwill and Kay Russell both from different parts of England meeting up in a shop and talking a bit about some of the hassles  PWFAS endure every day.

First, let me tell you that Kay and Sarah are THE first two people I met on the internet who also have FAS. Therefore, these two ladies are very dear to my heart. I developed Foreign Accent Syndrome on May 11, 2009. I had enough medical experience to recognize what was happening was definitely NOT normal. Part of what I like to do to always keep learning and the web is a great instrument in not only learning facts, but also in connecting and networking. In fact I first connected with Sarah and Kay in 2010 after I saw Sarah looking like she was in a state of shock on a big national morning talkshow in the UK. The nasty remarks and cruelty they flung around, joking at her “chinese” accent, were devastating. She was on such a public viewing only ONE month after getting her FAS, yet the show had a doctor who talked intelligently to the audience about possible explanation of what was happening to her. I thought back to my journey with FAS at only one month in: “MAYBE this will just go away” and “it started suddenly, maybe one day I’ll just wake up and it will be over”. And as one month turned to two, the half year anniversary (we call them FAS-birthdays), then 1 year, then 2 . . . “nope; I seem to be stuck here.”

Instead of getting mired down in trauma of being so drastically altered as to speak as if I were a foreigner and the many different ways that people interact with me as a result; I was emboldened through growth in my faith in God with compassion to stand up for the misunderstood, seek out the hurting and ofter comfort and understanding however I can.  At my core is this >>> Truth matters! How people treat other people, especially suffering people, matters! Doctors, so-called “friends” and even family who don’t know how to diagnose it, show compassion or just brush someone off are not good caretakers. People with Foreign Accent Syndrome may sound drastically different, but we are still the same people deep inside. How would YOU feel if it were YOU? It could be, you know, because there were no warning signs given to any of us… just BAM! “this is your new voice”. YIKES!

HOW WHOULD YOU FEEL?

How would you feel when your best friend calls you on the phone and then says “Oh, sorry; wrong number” and directly hangs up on you? Of course they call you back seconds later? HOW would YOU explain it?  And what about the numerous times people raise an eyebrow at you as a “foreigner” or say “why don’t you go back to your homeland or learn to speak properly. They flat out call you stupid! They accuse you of such things as being lazy: “you could fix it if you wanted to.” There’s that horrible moment when someone you know well stands there with slack jaws after they’ve heard you speak in your “new” voice. They can’t figure out why you are talking that way. Is she in a play, been visiting or living abroad? It really is sad when total strangers treat you better (because they just assume you are a foreigner) than people who have known you for years (they just can’t believe their ears).  It is DRASTIC and LIFE-ALTERING!!

SUPPORT & UNDERSTANDING: DOWN WITH IGNORANCE & FEAR

I  realized that the primary reason so much of this was happening (misunderstanding, poor treatment of legitimate sufferers, and proliferation of MISinformation about FAS) was because of IGNORANCE and FEAR!  Well, knowledge and wisdom is the cure for ignorance and “perfect love casts out fear” (from the Holy Bible). So my passion was flamed way back in 2010. I started friending anyone I could find who also had FAS. Since then I started the Foreign Accent Syndrome Awareness FaceBook group where anyone can learn more about FAS and are invited to join the group to legitimately and respectfully ask questions, give opinions or experiences with FAS. Here is the link.

There is also a private group with PWFAS from around the world. There are now over sixty people there, with a majority of them sufferers or a supporter on behalf of another. The group is PRIVATE because it allows a safe place for those of us sufferers to “let our guard down” and be real without fear of injury. These two places and Twitter as well as various leads from other people have helped my FAS-Family meet and help others. Now THAT is rewarding! It gives great purpose to my suffering when I hear a new sufferer break down in tears to hear my voice across the phone or Skype because they can hear me validate them and help them feel that they are not alone. Similarly in my various writings on the web, I can die happy knowing that I am doing my best to stand up for the lowly, help educate the educators through my experiences. What makes a “specialist” a specialist! Sure, book knowledge and background knowledge help, but is it not time of actually experiencing things, living it, breathing it and learning from it what helps make a person a true “specialist”.

One of the things that I enjoy about Professor Nick Miller is that he actually involves the PWFAS in the research process while at the same time sharing his ever increasing knowledge with them to help them better manage their lives. It is a dream of mine to be able to be in partnership with his kind. However, he is in England and I in the United States where it seems to be much harder to locate people who want to research such a rare disorder.

Since the invention of the world wide web I have been so blessed . . . I can get up to the minute information. Like a good discount store, there is trash in the pile of bargains of information… but… if you know where to look and HOW to look there are great gems scattered everywhere. So I guess you’d say I am a research treasure hunter when it comes to useful information. It’s like putting a jigsaw puzzle together when I do research; a piece here, a piece there and soon I have an assembly of information that is quite helpful in finding similarities and patterns or possible causes or treatments. Of course, it is important to use reputable sources, but I highly value the personal experiences of not only the doctors who have book knowledge, but especially seek out “experiential” knowledge. Society as a whole places great value on a doctor’s opinion (as should be), however, the best doctors are those who admit they don’t know but will work WITH the patient to learn TOGETHER!!!

Cutting edge technologies have greatly enhanced my understanding of a variety of topics. However, this topic, Foreign Accent Syndrome is not just a curiosity; it is MY LIFE! I am on a mission to use my own experiences plus all that I continue to learn to help comfort, build-up, encourage, and educate others. Whether they be a sufferer, a family member, a doctor or a student, a seeker or a skeptic — whatever. We all have different ways of dealing with the bizarre and unknown. However, to those who inundate the web with MISinformation or scoff at those brave enough to step out into the public eye, I say “shame on you”. That is nothing short of cruelty! They prove themselves fools who speak without knowledge or refute what they do not understand.

WHAT IS FOREIGN ACCENT SYNDROME?

It is rare (less than 100 medically reported/documented cases in the WORLD… EVER! The altered speech is perceived by others as being foreign; sounding like the person had come from a different country or part of the country in which the language or dialect is of a different flavor. It does not mean that the person suddenly can fluently speak or understand a foreign language, only that the sufferer “sounds” as if they are foreign due to prosody, inflections, accent, and other aspects of speech production. The sufferers themselves may or may not “hear” the difference in their own head enough to help with speech therapy. A person’s speech is altered drastically after some kind of injury to the brain (stroke, past concussion, migraine, whether recent or in the distant past, or maybe for some yet unknown reason. The damage may not be seen via traditional scans such as CT, MRI, EEGs or Xrays, Yet there have been more detailed viewings via Difusion-Tensor MRI (DTMRI) or Functional MRI’s (fMRI) HAVE shown damage at the nerve level that did not show up on the more frequently utilized brain imaging techniques. However, since these machines are so very expensive there are not many places that perform the scans and insurance doesn’t cover their use. Oh, and one more thing, many people on Twitter proliferate the falsehood that Foreign Accent Syndrome is a Psychological or Mental disorder. The truth is that FAS is a “neurological” disorder. This is a very important thing to correct if you see it. I have written to the writers of the articles that falsely stated this, but no retractions or corrections were made to my knowledge so the MISinformation continues. It’s up to those of us who care for truth to correct when we see it in order to promote true understanding.

PURPOSE

I have a PURPOSE in having such a rare thing as Foreign Accent Syndrome. Namely: I must tell everyone, Foreign Accent Syndrome IS REAL!

Being such a rare thing means that more people haven’t heard of it than have. And that includes “specialists” such as neurologists, hospital ER staff, family doctors, psychologists, clergy, college professors, etc. ###You can quote me on this: “Just because you have never heard of something before or can’t see it or have no experience with it, does NOT mean it doesn’t exist!!” Every inventor, great scientist, and the wisest of students and educators as well as cutting edge researchers have learned: the greatest thing about “knowing” something is to realize we can’t ever know it all!

Given my background, my talents, and my years with this rare disorder, I am always increasing in understanding more and more about it. I believe that my passion has always been communication, artistic and interpersonal: caretaking people or animals, science, especially physiological and  behavior, God-loving, nature-admiring, art, poetry, music, photography, film, — all of that.  I have learned how to use all of these skills in the New Media I now see how God allows me to use all of that to help others and it is humbling and exhilarating at the same time.

WHAT NOW?

I would like to encourage you to read more on my site here about Foreign Accent Syndrome? I am going to go forward with creating a site specifically for Foreign Accent Syndrome that can act as an aggregate depository and interactive location for anyone around the world, but in the meantime you can just type FAS in the search box above and see several postings specific to reports of living with it, thoughts, experiences, etc. as well as links to other media. I would really like to work with scientific research and especially as the field of neuroscience is growing. I am encouraged by our U.S. President Obama’s announcement this year of “The Brain Project” in which the government is encouraging more study in the area of brain function and dysfunction. I do hope to be included in a reputable research program and especially have them to view me with fMRI to see how my brain functions when talking versus singing. (I am able to sing in my normal voice).  It is invigorating to connect with other people who are passionate about helping others. I pray that God will grant you the joy of knowing you are unique, no other person can be you as well as you!

Love others as you wish to be loved. Correct lies. Promote truth and compassion. Enjoy living in whatever your circumstances with the sense of purpose. It is a great way to live!

PLEASE DO LEAVE A COMMENT BELOW… it really helps me to know what others think about what I write here. And if there is anything I can do to help you along your journey, just ask. All legitimate inquiries will be answered.

Finally, here is the link to the GREAT Documentary on Foreign Accent Syndrome that just came out called The Woman Who Woke Up Japanese:

Foreign Accent Syndrome News: Ellen’s Story – Part 01

Recently, I was out of town to judge a County Fair 4-H Dog Agility Competition. While waiting for my part of the day to start, I noticed the young lady next to me snapping  a lot of photographs.  She was obviously a photographer who didn’t seem to know exactly what was going on in respect to the showmanship judging that was taking place. I struck up a casual conversation and started to explain what was happening and what the judge was looking for.

Within a few moments, I was asked the number one question that most Foreign Accented people get; “where are you from?”  I answered, “from Indianapolis.” She replied with “I mean, where are you from ORIGINALLY.”  Etc. Etc/  The same old scene played out, but I kept it brief, because she was working and I was about to. I handed her my “business card” since she asked if she might contact me about doing a possible story on Foreign Accent Syndrome.

Sure enough, she called me the next week to conduct a phone interview which was about an hour in length. I had a LOT to say about the various aspects of Foreign Accent Syndrome. I have learned a LOT in four-plus years, so I took the opportunity to share as much as I could while keeping to the most important aspects of answering her questions. How did I get it? What exactly IS FAS? What is it like to live with FAS? What, if anything can be done to help?

I was quite happy to share what I have learned and still am learning, especially since it is so rare and there are not many doctors who have even heard of it, let alone seen a case. It’s just so rare, that even some medical specialists like neurologists, or psychiatrists, or speech therapists, have not ever encountered someone with it. Unfortunately, it’s rarity also leads to a great deal of skepticism and doubt… maybe even confrontational disbelief!  That is one of the hardest parts for someone who is still trying to grasp the sudden, drastic changes with rare Foreign Accent Syndrome “WHAT’S HAPPENING TO ME?!”

I will attach both a separate image as well as the original link to the published THE PAPER OF WABASH (Indiana) news article which is not exactly accurate.  If you want to the “online edition”. It is on page 22 of this week’s http://www.thepaperofwabash.com/online.php

Page 22 of The Paper of Wabash published 2013.07.24

If only I had been sent a rough draft, I could have corrected the errors before they went to print, but since it’s out there, here are some corrections:

I was slightly misquoted which seemed to infer that I was saying something I didn’t exactly say.  For example, the part about conversion disorder and the power of the mine was a bit “off” in the way it was written.  Still, it was not a major mistake.

The date of incidence was MAY 12th, 2009. Again, not a major thing, just two months after what she said of March. That is a bit more important as far as continuity of the story in case history.

It happened when I was working at my computer at about 1p.m.  We had weeks of thunderstorms which exasperated my migraines. The first different symptoms of “the onset of my Foreign Accent Syndrome” started with yet another head pressure headache, but my chin and then my lower lip suddenly started feeling tingly and numb; but only on the right half! The numbness continued to spread up my face: the upper lip, side of the nose and cheek, outside of and around my eye, eyelids, forehead, etc… always on the right and such an intense numbness that I could not feel the breeze that I purposefully created with my hand. When I pressed the surface of my flesh, it felt so numb that it reminded me of when I receive a shot at the dentist . . . you know. . . like your lip is three inches thick!!  The numbness continued to spread up my scalp and wrapped around the back of my head and then was very painful (painful, stabbing, karate-chop type attacks to the back and right of the base of my skull). It just surged even more while I was just washing dishes.  I really thought this was a pinched nerve and kept trying various movements to try to alleviate the problem.

When my husband returned from work, I told him what was happening and he agreed that it must be a pinched nerve. However, throughout the night the numbness traveled over my right shoulder and upper arm and my right grip felt weak. Talking to my husband we decided I would call my doctor as soon as his office opened.

Long story short, they couldn’t fit me into their schedule, so I was advised to go to the ER. While there, about 24 hours after first symptoms, others noticed my speech starting to change. When talking to my husband from the ER, he asked “what did they give you?” “Nothing. Why?” I replied. “You sound like they’ve given you some drugs or something.”  “No; only saline IV,” I answered, “but I am getting really sleepy.”  It was only noon time!  Yet when I had received my CT, the neurologist held me for an MRI but after a long time of waiting they said, “Alright. We’ve decided to send you home after all. Just call your GP and tell him you need to get an MRI in the next three days.”  When I went home at 4:30 in the afternoon, I went straight to bed and didn’t wake up until 8:30 the next morning!! I didn’t wake at ALL during that entire time; not to eat supper or breakfast, nor even go to the toilet!

The next morning after the rest of the family had left for the day, so when I spoke to our dogs, I was greeted with an entirely different voice! ! !  To me, it sounded  a lot like a person who was deaf that can still speak.  I did record my voice in those first few days… however the online service I used called TalkBox has since changed ownership and those files are lost forever. What a shame!  Now, I make sure to keep a copy somewhere else. I’m not going to have that happen again if I can help it.

In any case, you can see why “Woman goes to bed with a migraine and wakes with [a foreign accent]” doesn’t quite tell the story.

Lest you think I am negative about the story . . . NOT AT ALL!  The reporter was very kind in the manner of her interviewing me. She indicated genuine concern and found the rarity fascinating. She showed empathy in how she interviewed and commented about how she imagined it would be to cope with such challenges. Then, she did something no other interviewer has done previously; she asked HOW her readership might be able to HELP! Is there a foundation set up to receive contributions or help? No. We are not officially set up with a foundation, nor official website. There IS an open support page on Facebook http://www.facebook.com/groups/FASaware/ as well as a closed one which is only for actual FAS people. My blog is another resource that is more accessible, searchable and more interractive.

– – – OKAY – – – THAT’s ^^^^ the first part of the story . . . I will add more at a later post. So you’ll just have to come back and visit another time.

I always welcome genuine questions and comments.   I am especially interested in helping others to learn about FAS.  Using my experience to help others through theirs helps make living with it more meaningful and even joyful (dispite circumstances this IS possible) as I know there is pupose in the pain <3

 

 

FAS- Foreign Accent Syndrome for Four Years and Learning

I have really been behind on my blogging about Foreign Accent Syndrome lately. I do have a LOT happening in my life, but one of the most important missions I have is to help give information to the world about this very rare condition that we just abbreviate FAS.

I have made a really good video about the FAS, but unfortunately it was with Flash, and I am having trouble being able to share it, so I may need to recreate it. In any case I will endeavor to stay more active here. For now, I am off the computer for a bit. TTYL