We are fast approaching a month since I first had this strange accented voice coming out of me during normal speaking times. And yet, there has been very little “medical diagnostic” progress. Since being discharged from the hospital I have been to one appointment with a speech therapist, and another appointment with a new neurologist. Both of these professionals had never even heard of Foreign Accent Syndrome before. Likewise, both of these occasions had people believing that I was simply a foreigner speaking English with a foreign accent? “Where are you from?”
But it was when the new neurologist asked me, “so why are you here?” that I became the most frustrated. These new doctors who had not known me before the affliction, do not truly grasp the severity of my problem. At least the new neurologist entertained my theory on the matter and took the material I had printed off about F.A.S. He almost seemed to dismiss it though in statements that were similar to “but you did not suffer severe head trama,” as a precursor to the malady. I pointed out that there was one case in particular where a woman had IDENTICAL symptoms in regard to right facial numbness and even down her right arm and hand prior to her diagnosis with F.A.S..
Upon leaving the neurologists office, he had provided me with some links to such organizations as N.I.H. (National Institute of Health) and also set me up for an E.E.G. to be conducted on Friday June 12th. Otherwise, I’m not coming back to see him until 4 to 6 more weeks.
In the meantime, I try to remain upbeat and humorous. However, it IS difficult as I struggle to say some words that don’t get along with this heavy accent. Also I notice that the speech pattern and order (way in which words are put together: nouns, verbs, adverbs etc.) and unexpected inflections and stresses are placed in the words or sentences as I speak. If I think about catching all the “errors” I get a headache!! So, a lot of times I just allow myself to “sound funny”.
I’m getting the feeling that many doctors are not getting seriously proactive about getting to the bottom of what is going on because they don’t appreciate the profound difference it has made in my life. Many of the newer doctors and nurses were basically strangers to me before now and so do not know the “real me”.
So, I made an appointment with our family doctor Dr. Patterson. The medical office manager noticed my accent right away. Nicole was also the first person I called when I first woke up with the numbness spreading down my right arm almost a month ago. She is the one who talked to Dr. Patterson and then told me that he wouldn’t be able to see me in the office that day and would not be able to diagnose me over the phone so to “go to the Emergency room if you want to.” It’s a good thing I did. Although, that CT scan did not show a stroke, the ER dept. did notate some of the early symptoms and timeline right as it was happening to me. That was the Methodist ER on Tuesday, May 12th.
It was the delay of not going to be able to see anyone before Friday along with my new speech difficulties that prompted my Chronic Pain Group friends to assist me in getting to the Clarion West Hospital ER on Wednesday and then I was admitted for two days. Final diagnosis after a second CT and an MRI, “slurred speech of unknown origin”. Dismissed with instructions to follow up with a new neurologist and outpatient speech therapist.
Back to the more recent past: last Friday Dr. Patterson talked with me and was shaking his head in disbelief as well as all of my friends. It is profound! This strong accent just isn’t ‘me’. Yet everyone says, “at least you have a charming accent. I rather like it. I wish I had such a lovely accent.” I know they mean well, and it is something that I am grateful for, however, I want to know ‘why’ and for ‘how long’ and these kind of things.
In the meantime, I am scouring the internet and growing my research file of articles and names. Names of fellow sufferers and the details of their stories, names of doctors, neurologists, speech pathologists, specialists of all kinds and areas of expertise. Above all, I am looking for contact information. I very much believe that what is going on within my brain is a benefit for research into brain function or malfunction as it may be.
Above all else, I am fighting to endure the voice that isn’t really me. To make it pronounce the words more correctly, or leave out all the ‘ah’s” that sneak in between words of a sentence. To shorten those incredibly strong and long “U”s that make so much of the sentence sound Swedish. This week I have managed to finally be able to say “yesterday” without flat-0ut stopping between each and every syllable. I simply have to swallow back the “er” sound that wants to be so pronounced with stress. For you it may look like “yes-sird-aey”. You would not believe the effort it took me a week to get this down, and I still sometimes get hung on it a bit. At this point I am not scheduled for any other speech therapy. I am making these corrections with the help of my very patient 19 year-old daughter and saintly husband.
So far my trying to contact others via email or linking to this website in an attempt to aggregate the information into one place, have failed to produce a connection to constructive help. I do see that the once a week segment that I’ve been doing with WIBC 93.1 FM on Tuesday mornings at 7:45 a.m. ET have been impacting others.
That is an answer to prayer! If I must go through this. AND I or any of my doctors know “why” . . . then at least, I can marvel at the peculiarity of the situation… and laugh at the funny accent that is not my own… right along with them I will laugh and marvel. Because, when I am doing this, I am not alone and there is not sorrow. There is fellowship in suffering, in facing the unknown with the faith and hope that comes from knowing that God is and always has been in control.
I believe that none of this time is wasted. However, I do want to get movin’ here. It’s time!! Let’s get serious about gleaning what information we can medically obtain from this event. Can there be some therapy to help ease the strain of trying to correct the speech so much of the time? Would we learn some valuable information from a functional MRI and PET scan. I am certain that there is something profound happening within my brain in different places, because my singing voice is MY voice, not the accented speaking one.
In any case…finally, this week… I am seeing a glimmer of hope that at least one, maybe two doctors are taking my problem seriously and are actually going to help “light a fire” of some kind of action to help me do something productive in regard to this thing.
Tuesday was another interview time with WIBC 93.1 FM radio friends Terri Stacey and Big Joe Stayzniak. I’m in a regular spot on Tuesdays at 7:45 a.m. for now. I am attaching the mp3 so that you may here the interview.
For those friends who do not have the bandwidth to listen to the interview (and you know who you are) here is a brief outline.
In the previous week’s time:
I saw a brand new doctor/neurologist who said “why are you here?” and who had never heard of Foreign Accent Syndrome before. Having never heard my unaccented voice, he didn’t notice the significance of such a drastic voice change.
I have been scheduled for an EEG test for the 12th.
We talked in the interview about how very many people hear me and ask “Where are you from?” and my standard answer is “Where do you THINK I am from? We are taking a vote and I’d really like to know what you think?”
Then I gave Terri and Joe the real wonderful news: my singing voice IS my voice. In other words, after having talked for a while in my accent voice I am getting a bit depressed about this not being MY voice. However, God has given me a gift; He has left me a bit of comfort. When I cannot stand it anymore all I need to do is SING. I then gave a sample of my singing “You are my Sunshine”…. Terri noticed it right away. “Wait a minute Ellen!! That is YOUR singing voice!!” I replied “Yes, that IS my voice… my real voice”, So God has given me the ability to sing in my REAL voice. : )
The interviewers made some kind comments about my singing voice. “Maybe God wants you to sing more.” They also commented on my positive attitude and said we’d talk again next week at the same time if it’s okay.
My answer? “Yah Shuuuure”
This morning I was interviewed by our local Indianapolis radio station WIBC. Big Joe and Terri Stacey have both seen and talked with me at radio events in the past, so they know that this new voice is not my regular voice. They are as facinated by this strange occurence as I am.
This foreign accent syndrome is so quite an interesting phenomena!! There are many different videos about it on YouTube even tho it is so rare as to have only 100 people in the world with it. Apparently, it is so rare that not many regular doctors have heard about it before either.
They asked if I would come on the morning show with them to discuss this recent verbal U-turn in my life and I was more than happy to. I can think of nothing better than to share this rare occurance with my friends and neighbors over the 50,000 watts (or however big an area it is now), so that more people are made aware.
Also, as it is happening to me, I totally trust these dear radio personalities, because I have seen the love in their hearts for the community expressed over and over again. So I trust them to ask me whatever they want and I will answer it! They both are witty as well, so we can also have fun and laugh a bit, so as not to get bogged down with some kind of gravity of the situation. It is out of my control. I do NOT know if I will get my regular voice back, or if I will be continuing to sound like a world traveler that has never really gone anywhere.
This interview was a very good one — balancing out the bizareness with the scientific wonder as well as keeping it light with humor. Way to go Terri and Joe click this link to listen>> .wibcinterview090526