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

 

 

“ACTION” . . . or not

Ellen’s A&E Filming Tale       By Ellen Spencer on 2012.03.04

It's time for ACTION !

~~A Day of Hope & Promises~~

Saturday, May 15th, 2010. It was a very fatiguing  day filming (15 hrs. Different locations and wardrobe changes), but it was well worth it.

I was contacted by a California production crew who were legit and creating a pilot for a new science series to be aired on A&E. This was the day they arranged to fly in to film my story. The crew was fantastic!

There were legal papers signed, confidentiality, permissions, location filming paperwork, etc. Of course, my husband read these things first. My entire family was involved and interviewed as well. Also a dear friend agreed to meet (husband called & explained that there was a surprise and film crew involved). Bob is a friend that had been closer than a brother from our old church and music ministry with us, but he had not heard the news of my FAS nor heard me speak with changed voice yet. They wanted to capture his initial shock on film. Etc. Again very well done.

The production team filmed me as the had me talk to Dr. Jack Ryalls over a speakerphone call that they prearranged. Then I was told by Dr. Jack on that call … Yeh, sure, he’d be happy to send me several contacts of FAS experts that he know so that I could seek help. Even mentioned some universities who were holding research and doing more precise fMRI and other brain scans and speech analysis than were not being found in my area. He told me on that call that he would email me those contacts As well as files/articles of others who had FAS but now regained their original voice. He told us that he was pretty sure that my original voice would return. I cried! Tears of hope! All of it was caught on film.

Then, in mid afternoon the film producer had arranged a professional accent coach to visit me at home. She drove to Indy from Chicago just to meet with me. Like my good friend, she was not given details about my FAS so that they could film her shock at hearing me speak for the first time.

Her career is helping people acquire, practice and perfect accent. She routinely teaches actors like Kevin Costner ready for a Hollywood film through coaching and speech exercises. This lovely Christian lady hit it off with me right away.

They wanted to have her tell them “where is her accent from?” then I explained FAS and what little I knew about it.

They filmed her running some short accent/deaccenting exercises with me after I sang (in my normal voice). She offered to coach me for free up in Chicago, just contact her. The producer said he would arrange that.

Finally after a very favorable and professional day of filming for 15 hours, I knew there was a crew of four guys and a professional accent coach who had erased their prior scepticism of Foreign Accent Syndrome being very real and fascinating. Not only that, but as they prepared to leave our home that day, every single one of them expressed genuine care & concern as a new-found friend.

They were on a super tight schedule or they’d like to visit more.. go out to dinner together, etc.  I still am friended up with: the Asst. Producer who was in charge of the project; the main camera man (who films The Amazing Race, Pit Boss and other well known shows –He has GREAT stories!) ; another young man in the crew was “Straight-Edge” so I learned about that culture as well. Memories and friendships were made on that day.

I was told by the producer that it would take them a couple of weeks to finish the editing to produce the story for presentation to A&E and then they’d send me a copy.  Ultimately the run date would be up to A&E. This series project was slated for possible fall line-up (2010) When they had a date of airing they would let me know.

Well, when all was said and done:I was left very hopeful on the actual day of filming. This story would air on a reputable station and actually demonstrate the true story of FAS to the world!! More awareness would lead to less ignorance in the public and more research and effective treatment plans!!!

Not only that, with so few reports or facts posted on web –Dr. Ryalls promised he would be hooking me up with some contacts.  PLUS… with his help the producer said they want to help me by setting up and paying for those future tests and treatment !!!!

What a day it was! There was much accomplished, connections made. Most of all — there were all these promises of helping not only myself but a lot of other people with this rare disorder. So many hopes and promises;  What could be better?

~~~~~~DISAPPOINTMENTS~~~~~~

As time went by my elation was replaced with disappointments. Broken promises lead to broken hearts.

To start with, Dr. Ryall’s NEVER sent me ANY FAS contacts he had promised (even after I resent requests via email). Nor has he done so on the Foreign Accent Syndrome – New Facebook Group page. There has been years of opportunity, but nothing but the disappointment of broken promises.

The additional medical help that they said they would hook me up with NEVER happened.

The film producer borrowed a few of our home-movie VHS tapes to transfer into usable format. It contained footage of  me and family before FAS voice change. So I looked forward to the processed digital file copies they promised when they sent back the VHS tapes back in a week or so. Although I received my precious tapes back, there were no other DVDs.

I NEVER did receive a copy of the story NOR has it ever run. Even if A&E didn’t “take up” the project… I still should have received a copy.

Originally I was told that although there was a lot of footage they’d send me DVDs or digital files for me personally.

This was all done in May 2010 (almost exactly 1 year after my onset) — it’s now twol years since the filming . . . two YEARS…. and NOTHING…not even a copy for myself.  🙁

“Hope deferred makes a heart sick” — Proverbs 13:12 (NASB)

~~~~~PURSUING WITH PASSION ~~~~~~~~~~~~~~~

So, now you may better understand one more reason why I am so passionate about Foreign Accent Syndrome Awareness. <3    You can find a group page entitled “Foreign Accent Awareness” on FaceBook. I welcome you to join that group and post questions or links to information that you may have yourself. Here’s a direct link  Foreign Accent Syndrome Awareness.

We cannot depend on others to help us when Foreign Accent Syndrome is already so rare that not many people (let alone doctors) have ever heard of it.  However, by sharing what we know and being available to do whatever we can, we can;  increase awareness, encourage research,  foster compassion and understanding. This will be making an impact! “ACTION” !

Prayer for Baby Jonah’s Life

I am posting this email prayer request on my page so that everyone can get details. Please join me in praying for this family! Plus any comments that you leave would be a blessing to them. For I know that I have many praying friends.

Our missionaries in New York!
Sent: Saturday, January 08, 2011 7:00 PM
Subject: Baby Jonah Silverberg Fighting for His Life

Dear Praying family,

We are so thankful to the Lord because we have you, who love us so much and are praying for us. We are endeavoring to put together a prayer list, after a long time and many computer crashes. Some of you have already received some of this info. Here is a summary.

On Tuesday, Dec. 28th, Valerie went into labor. We were snowed in from Sunday’s storm. Not one plow had come down our bock yet, and we could not get her to the hospital. EMS couldn’t help. By God’s Grace we were able to get a cab. Val had to walk to the main Ave. and go by herself, as I stayed with the children. Val had a C-section delivery.

The surgical team was a assembled one week later on Tuesday, Jan.4th, and began early in the morning what turned out to be over 12 hours of open heart surgery.
They redesigned Jonah’s Aorta and Pulmonary Artery, so he could have a chance to live 6 more months, when hopefully he will undergo another open heart surgery.
That night, Jonah went into Cardiac arrest 2 times and was revived with the paddles both times. Jonah then began retaining fluid at a life threatening pace.

By Thursday night, it was determined he had a blockage and under went another open heart surgery. They found his Superior Vena cava to be narrowed and performed a surgery to widen it. Since then, Jonah has had several episodes of life threatening blood pressure drops, but he made it thru.
Please continue to pray for him. His condition is extremely critical. His chest remains open, as he is so bloated, the wound cannot be closed.
Another surgery is still a possibility as well. The chance of infection with his chest like this is very high. He must drain fluid, but slowly. He is still alive, and we are thankful to the Lord for this. Please pray for Val and I, as we are exhausted, and trying to keep up with all that needs to be done.

In Christ’s Love, with gratitude,
Marty for Val