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

 

 

VOTE FOR CLUB OFFICERS This Thursday


Club Officers for our Waggers 4-H Dog Club will be tallied this Thursday at club.
If you have a conflict and cannot attend club, OR if you just wish to vote before club time you can also let a leader know by 1 pm Wednesday.

VOTING –
Each clubber will receive one ballot and should vote for a person to hold one office. In other words, do not vote for the same person to hold more than one office. Of course it is acceptable for you to vote for yourself in the position you’d most like to accept.

Here is a brief description of the offices and their responsibilities.

President– regularly runs meetings.
Start meeting on time & run according to schedule.

Vice-president– assists president, lead pledges. Recruit demonstrations.

Secretary– takes attendance, announces calendar events, notes “meeting summary”. Gets familiar with paperwork filing of the club papers (Ellen will oversee that part).

Treasurer– keeps monetary record, reminds people of money related items. Adult help will be provided.

Sergeant of Arms– facilities: set up & clean up. Chairs, tables, flags, posters, handouts, etc.

Hospitality– welcome guests and coordinate any refreshments. Make sure we have hand sanitizer, napkins, plates, cups, etc. Recruit volunteers and give reminders.

Historian– create/keep scrapbook; use a three ringed binder to keep a record of our year. Be creative with photos, fliers, notes (secretary can help). It is important to be neat and as complete as possible, as this record will stay with the club for future reference to history.
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As an officer it is important to come to club early if possible so that you are ready to fulfill your duties. You will be a representative of what it is to be responsible young 4-H leader. So be a good example not only to our club, but to others you meet. My goal is to be at club at 6 p.m. so you can arrive anytime after that. That is also a good time to come to club early if any clubber has need for additional information (like missed previous week).

Don’t worry about uncertainties of your office. As a club leader I will make sure you are equipped and help you in any way possible. You will get the hang of it, develop skills as you serve in your office and be good at it. 🙂

As officer you are chiefly responsible for your duties, however — you may ask for help from others. One of the greatest characteristics about our club is the willingness of fellow clubbers and even adults to offer help. Just ask for help when you need it, or offer it when you have it to give.

I am very excited about our 2010 Warren Waggers 4-H Club Year.
Now vote for who you believe to best fulfill the office.
We will announce the results at the end of club on Thursday (4-15).

THE OFFICER BALLOT

President: Shelby Trees, Erin Lego,

Vice President: Kiersten Tuggle, Melissa Miller, Allissa Arnold

Secretary: Matthew Uhrig, James Reed

Treasurer: James Reed , Mackenzie Carr , Shelby Trees

Sgt. of Arms: Erin Lego, Shelby Trees, James Reed

Hospitality: Melissa Miller, Shelby Trees, Kiersten Tuggle, Shelby Cleek, Erin Lego, James Reed

Historian: Shelby Trees, Erin Lego, Melissa Miller

If you are voting early send your ballot selections to [email protected]
BEFORE 1 P.M. of this Thursday.

Can My Dog Come?

“Can my dog come to dog club?” That is a question that I have been asked repeatedly. Here is the answer.

In order for your dog to attend our Warren Waggers 4-H Dog Club the following must be true:

* the clubber is (or is in the process of getting) registered as a 4-H member with Marion County. NEW MEMBERS need to leave their dog at home for at least their first meeting.

* the animal is healthy: Current on required vaccinations (you need to be able to prove it with vet papers, so keep a copy of papers with you), dog is not “in season”, and mustn’t show fleas or other communicable malady. Returning members may utilize last years vet paper for first few meetings IF shots are still current to allow for vet visit. Please have current year 4-H Vaccination Form completed & signed by your vet by May 15! 

* Dog’s age – the animal will be at least six months old at show time. Dogs under one year must not jump in agility. 

* Dog’s Behavior – a dog that the leaders deem as a danger to any other person or animal may not attend club. Dogs which have excessively disruptive behavior may be pulled aside for additional behavioral training.

There you have it. I hope that helps make it clear for you. If you have any questions, feel free to contact me.