Therefore, I am very happy to add to my blog these links to these news stories which were done by JAX TV station in Florida. It is exciting to see some media attention being given to the disorder. Let some people who believe that this is not a “real” problem become less ignorant by getting a little exposure and also help those who are currently dealing with similar stories to take heart.

Here are recent videoes done with fellow Foreign Accent Syndrome friends of mine done by local Florida news TV stations.

This first one is a longer raw interview with Dr. Jack Ryalls from University of Central Florida. He is well known for his expertise in this field of study of the very rare disorder. So it is especially good to hear his insights in this more lengthy piece on what is involved in Foreign Accent Syndrome from his perspective.
Interview with Dr. Jack Ryalls Fox30

Pattie Yakaboski,
Pattie: Finding Her Voice

Video of Paula Westberry
Paula on JAX 2011.11

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You see, I have been praying since January 11th, when I learned from a mutual friend that Joanne Heim (great Simple Life blogger, Christian author, wife and mother) suffered a sudden and severe stroke. Her young daughter found her in the basement shaking and an ambulance came to rush her away to the hospital where the family’s journey was about to take a drastic turn into a dark tunnel of unknowns.

There have been many ups and downs throughout the last month, seizures, brain swelling, surgery, coma, tracheotomy, monitoring of the brain activity. I have prayed for the two little girls Audrey (12) and Emma (not sure of her age) and of course, her husband, Toben who has curtailed his normal work in order to be by his beloved’s side.

It was interesting to hear Joanne’s situation mentioned on the local Moody Bible radio station that I listen to on a national program called Midday Connection. Then, apparently her blogsite registered 4,000 hits as people came to read about her and lift up prayers and comments of encouragement.  Friends have helped with updates being posted to her blog and even set up a way in which people could help the Heims out financially since this is taking Toben away from his normal job and also anticipated to be a lengthy and costly recovery.

I totally love how the Brotherhood of Christians come together and show the Father’s love at such times!! People who are thousands of miles away, still our brothers and sisters, can be reached through this wonderful tool of the internet. Blogs, Twitter, Facebook and even Skype are all powerful tools to connect with people in a way that some have viewed as too technological and therefore “cold and insensitive”. However, I disagree. This ability to communicate electronically has offered us great opportunities. That’s why I so love using it to practice my 5E’s of exalting; equipping, edifying, examining and evangelizing!!

Because of my own experiences with very rare Foreign Accent Syndrome since May 12, 2009, I am even MORE enthused about the process of communication and it’s many modes. Although I sound like a foreigner these last almost 2 years, I still count myself incredibly blessed to be able to sing and write normally.  This condition is so rare that many doctors don’t even know what it is, let alone how to help us. Consequently, I am so driven to have Linguistic Programs and Speech Pathology and Neurology labs to examine my and others’ brain via functional MRI or other means to learn more about the truly untapped wilderness of the human brain. I KNOW that a different area of my brain is functioning when I sing than when I speak. There is much to learn and I want to help.

Now; to the fantastic news that spurred this writing. My dear sister-in-the-Lord Joanne in a Colorado hospital, has blessed her caretakers and family with one simple act (simple, to someone who has NOT had a stroke nor been a coma).  Joanne cannot speak because of Tracheotomy and she’s had a hard time trying to use a pen and paper to write, but Toben had an idea to put an i-Pad in front of her. As she was in bed with the iPad, she utilized a doodle program and drew with her finger :

“Do we have Otter pops in the freezer at home?” A breakthrough!!! Then when therapist asked her what her favorite flavor was, she used her finger to spell out “orange”.  A great Hallelujah moment! I became emotional as I read the news and can only imagine the unspeakable joy that her husband Toben and the witnessing Speech Therapist were experiencing. I also am most rejoicing for dear Joanne… she can communicate!! How wonderful!!

It is a sign of progress that she is allowed to eat popsicles instead of only ice chips that they had been giving her. But this added ability to communicate by the use of an iPad is outstanding!!  She continued to write about being uncomfortably hot, and having a bit of trouble with her tracheotomy that medical staff were then able to address.

As exciting as all this news is; experience has taught me that this activity is especially draining on the brain.  She, no doubt, will get very tired, very quickly as she takes the extra effort to communicate. So that is a continuing prayer concern; her strength, endurance and ability to STOP and rest. (If you but read her blogsite postings, you’ll see that it is not generally her nature to just stop). I do pray for her, as I do myself, to make the time to stop; be still and know that He is Lord. She has seemed to me to be a driven person to “do” things. Now, the Lord has caused her to “rest in Him” an “be” rather than “do”. Oooh, that is a lesson I have frequented a LOT myself : P

At last nights prayer meeting Bible lesson, Kurt taught us out of  1st John 5: 1-5 where the apostle Paul talks of being “overcomers”.  It is through the Power of Jesus Christ that we are able to endure what appears unendurable; to more than survive a trial, but actually thrive in new ways as we come out of the other side of a dark tunnel of this world’s trials and into the Light of hope that is ours by being a Child of God and KNOWING that God promises never to leave or forsake us — He is our LIGHT through the darkness. His Word tells us these trials are “light and momentary” — not to belittle our experiences of suffering, but as a reminder that this world, in this decaying body… when viewed in light of eternity . . . is fleeting.

As I close, I invite you, my friends,  to join prayers for Joanne’s continued healing, that the testimony of the Goodness of God be evident to all who witness their responses of God-given peace and joy in the MIDST of the trial,  as well as praising God for his incredible mercies to her and her family.

Toben: I pray that you will share this with Joanne and the girls, so that they can know that God is at work through your situation, among His people, throughout the world.  They will know we are Christians by our LOVE.

To read Joanne’s Blog here is the link: http://thesimplewife.typepad.com/the_simple_wife/

For updates from Toben via Twitter: @tobenheim

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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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Twice I have thought, “It’s an 800 number so it must be important from a business connection” and I attempted to answer it with a ‘Hello’. But there was only silence on the other end. I tried a couple of times to say ‘hello’ in case it is was a poor connection, then hung up. The next day the same thing had happened. After the third day, I had reached a point of action. What could I do about this?

So I conducted a web search of the 800 number and found that I am not the only one having this problem with this particular phone number. In fact many people are having the exact same problem and are worried that maybe someone is trying to ‘slam’ them when they don’t get a response from the other end of the line. There is fear that someone may be stealing your phone number and trying to use it elsewhere without your knowledge.

One commenter on a message board had a very good link to register with the National Do Not Call List. Although I had previously done this with our home phone, I was uncertain if I had done so with my cell, so I registered all three family phones. So I am going to STOP THE HARASSMENT NOW and share the opportunity with you.

Here it is the link Register for National Do Not Call List.

To this particular pestering predator I say “Don’t call me… and I won’t call you!”

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Since I always have my digital camera with me, and my curiosity was peaked, I took out my notebook to collect some news. This is what I discovered.

I had stumbled upon RANDOM ACTS OF IMPROV. This was one of several surprise activities that will take place throughout the city during the ten days of the SPIRIT AND PLACE FESTIVAL taking place November 6 – 15th. (see Spiritandplace.org for more details).

This particular display, put on by Susurrus Performance Group (website click here) happened right at the noon hour, causing many city pedestrians stopping on the sidewalk and asking me what was going on. They joined me watching in wonderment momentarily before they continued on their way.

I believe that this is one of the goals of Susurrus and the many other performance groups partnering with the Spirit and Place Festival as they encourage some people to interrupt their mundane routine long enough to get involved in their surroundings; to stop and take notice of what is happening in their neighborhood. How refreshing it is to enter into a moment of wonderment and to take time to engage with other people that we would normally just walk by.

In that regard I challenge those of you in the Indianapolis area to keep your eyes open for surprise happenings and the opportunity to engage. There are going to be dozens of happenings over the next week that are unannounced. Thus, the Random Acts of Improv will surprise people. So keep your eyes open. Maybe we will learn to be not only see our community with fresh eyes, but perhaps, we might take it a step further and become actively engaged.

NOTE: not all events are surprises.  There are also 40 events–nature walks and driving tours, dance and theatre performances, conversations and workshops, panel discussions and potlucks, and much more! Over 85% of these activities are FREE!

Former Indianapolis Mayor Bill Hudnut will be present at the marque event on the last day. There is simply too much to cover here… so please visit the Spirit and Place Festival web site by clicking here.

Thank you to Susurrus and the Spirit and Place Festival (and the many other partners) for being such a blessing to our community by reminding us that we all can bless one another by just taking a moment to engage with another person in creative ways.

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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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This demonstrates to me not only the power of today’s social media and the world wide web, but also how much of an impact just one person can have. As my friends list continues to grow I am not out to place additional names on some list for the sake of numbers. Rather, I am amazed at the number of people who have touched my life or shared my life with me in some way.

It is not just the world wide web that connects us… No… it was far before computers were even invented that we were connected. God the Father intended for us to go out into the world and share our lives with one another. We make an impact where we are and with whom we are surrounded. That is why I like to think of myself as a “Walmart Missionary”… I will use the opportunity of standing in a shopping line to say hello to a total stranger and share a piece of life with them. Oh how marvelous it is when we are talking about the joys of living and walking in the ways of the Lord!

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I do get a lot of compliments on my good attitude as I go through the frustration and predictable concerns of any person going through an unpredictable dilemma. Again, opportunity through the trial, as I am allowed to come back to the fact that even though I do know what is happening . . . God does!!! And there is the source of my peace. Not once is God surprised by what is happening.

Here are the two audiio files for you that can listen to them… the first one in particular is quite small as it is just a teaser.

09-0609a-wibc-no03a

Then Terri and Jaimie do the actual segment with me at the link below.

09-0609b-wibc-no03b

The general contents of this weeks report were about

What accent would you like to speak with if you could choose? How long has it been and what have they done for you? How do you react when people keep asking where you are from? What about speech therapy? It is very rare and research and hard to learn about. Will your original voice come back? How people can think or do to people with FAS that are so cruel. Are there any good things as a result of talking with an accent? Do people treat you differently? Mentioning of teaching 4-H dog club. Terri announced my website (this one) Ellen5e.com so that people can keep up and comment themselves.

Just before signing off of this broadcast the producer Dan recorded me saying the following sentence: “The rain in Spain falls mainly on the plain.”  They are going to compare me saying this sentence from week to week to see if the accent starts to change back.

They ended the broadcast by playing the Swedish national anthem saying that they may use that in future when I am coming on. However, I do not think that is such a good idea. I do NOT want true Swedes to be offended and as I said in today’s broadcast… though much of my word pronunciations take on a Swedish strong “oo”s and “u”s; it is NOT a true Swedish dialect.  So I will be thinking of a different theme song for the segment… do YOU have any good ideas?

As always I appreciate your reading this and sharing any information that YOU may have about this incredibly rare and troubling medical condition called Foreign Accent Syndrome.

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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.

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