Currently Browsing: Foreign Accent Syndrome

Shining Light on Diseases: How’s Your Vitamin D?

Girl-Holding-the-Sun-Sunrise__32633-480x320I recently found out after a blood test that I am very low in Vitamin D. The doctor told me to take a supplement of Vitamin D3 — like 4 times the dose I was already taking! Wow! I knew that I am a gal that likes my sunshine and that Vitamin D is made by our bodies utilizing sunshine. Therefore, the winter months, having less sunshine because the hours of daylight are less, as well as the fact that I usually don’t spend a lot of time outside in my shorts outside in sub-freezing temperatures, would naturally mean a decreased amount of Vitamin D in me.

What I DIDN’T know was just how very many problems can stem from not having a sufficient amount of Vitamin D in our body. I learned a LOT by doing a little research on Vitamin D online. The most interesting aspect of it all is that Vitamin D is NOT a vitamin . . . it was misnamed . . . it is actually a hormone and therefore very important in the regulation of body function. Additionally, Cholesterol is needed by our skins production of vitamin D as it reacts with sunlight. When vitamin D levels are low the body will naturally make more cholesterol to be available for conversion to the needed D.  WOW! What a wake-up call.  So the doctor finds that my cholesterol level is high, so he prescribes statin drugs which reduce the cholesterol and my vitamin D level goes down and then all these problems get even worse. Wow! Additionally, not all Vitamin D supplements are the same.  I mean to say, Vitamin D3 is the proper form for us humans to take. When Vitamin D was first studied and named it was done so with testing on rats which are nocturnal mammals. Since they don’t produce the vitamin D with the help of sunshine like we do, it was believed that Vitamin D was obtained solely by diet; thus the term Vitamin… as in, coming from a source outside the body.

Then too there is the fact that we humans have different skin pigmentation and live in different climates. Those of us who live in areas that experience Winter season with fewer daylight hours and cold temps are obviously not going to have the same Vitamin D levels as someone who lives close to the earth’s equator and temperatures conducive to more time spent outdoors in sunshine. On the contrary, our lifestyles of less time outdoors and more times inside of buildings under florescent lights and in front of computers does nothing to bolster our stores of HORMONE D.

I came upon this fabulous wealth of information by Stasha Gom­i­nak, M.D (a neurologist at Tyler, TX) when I listened to a lecture she gave on Sleep, Chronic Pain and Hormone D. Here is a video Dr. Stasha Gominak Discusses Sleep & Vitamin D (all 5 parts). Listening to all of the video took about an hour and a quarter but it was subdivided into five parts so one could watch or refer to one section at a time if that were easier. I watched it as a whole as well as took note of the power point slides that she gave listing resources and references. This was a professionally done lecture which was communicated in such a way that a layperson could understand. My understanding by what she said during the talk, this was given to a group of caregivers and not just doctors. Therefore it is not full of medical jargon that is beyond a person’s comprehension. Rather it is a very logical account of how HORMONE D is behind so many health problems that many people have today.  I think it is important to mention that she points out the pioneering work done by  Dr. Walter Stumpf and the name “soltriol ” that he coined for this important biological hormone.

In doing more reading and research I found it absolutely fascinating that D3 has an important role throughout various functions in the body. There are receptors in the heart, the brain, the pancreas, the gut, muscles, etc. There is a direct correlation between insufficient D3 and several diseases: neurological dysfunction, migraines, sleep disturbances and quality, pain perception, chronic fatigue syndrome, fibromyalgia, migraines, acid reflux, diabetes, irritable bowel disorder, heart issues, high cholesterol and high blood pressure, etc. Man!

This all is supported by my own personal experiences. Chronic Fatigue Immune Dysfunction Syndrome came first, then Insulin Resistance, then Fibromyalgia, acid reflux (I blame that on the meds),migraines started after an auto accident, in 2009 I developed Foreign Accent Syndrome, then my cholesterol was too high. Finally, I had neurological abnormalities after being put onto a statin drug. I KNOW it was as a result of being on a statin drug that I suffered a faux heart-attack and then sever muscle weakness to the point of not being able to stand up or walk. Sure enough, after being off of the statin and employing Physical Therapy, I got better within about three weeks. THEN, I discovered several people (including a parent) that had similar horror stories from being on a statin drug. Then I did research online and saw hundreds of similar complaints. There were even commercials on television stating that there was a class action suit whereby statins were associated with causing people to become diabetic, suffer muscle weakness, heart problems, etc.  I declared “NO more statin drugs for me,” I will use fish oil or krill oil, but absolutely refuse to take that detrimental medication ever again.

Which brings us up to today, I started 2014 with a ten day hellish migraine that wouldn’t go away. Now it’s cluster headaches. Putting together what I have just learned as being the vast number of receptors in our body that NEED vitamin D3 and the fact that I am deficient in it now makes sense. So I have increased my intake of D3 and am going to monitor that with periodic blood tests. Additionally, I’ve learned that Magnesium plays an important role in helping to reduce headaches as does vitamin B.

I am much more informed on the physiology of my body when it comes to Hormone D (soltriol). It explains why I often crave time in the sun and suffer more in the winter. Perhaps a good long tropical vacation is in order.

Let me also recommend Dr. Stasha Gominak’s blog about this subject to you at Vitamin D Hormone: Sleep, Chronic Pain and Headaches.  I personally am excited to have found this information and am sharing it with my doctors and friends. Experience is an excellent teacher and mine is saying to me, “we may just be onto something here; something that can restore health and eliminate disease! I think the overuse of statin drugs is going to do more harm than good unless people see the importance of the cholesterol / Hormone D balance in our bodies.

NOTE: I am NOT a doctor and hold no medical degree. The information contained here is from my own personal observation and experience. It is intended to simply offer my opinions and point to the opinions of others. If you are having any medical concerns, please seek the care of your physician. Although I have stated my dislike for certain classes of medications, one should follow the instructions of their physician along with their own personal convictions. These are intended to point you to some resources and give you a reason to think about your plan of care and overall health. God bless you on your journey to achieving a better state of health.

PLEASE TAKE THE TIME TO INVESTIGATE THIS FOR YOURSELF.  I WOULD REALLY LIKE TO HEAR WHAT YOU HAVE EXPERIENCED AND LEARNED ABOUT THIS TOPIC BY SIMPLY LEAVING A COMMENT AND IF WORTHY IN YOUR EYES SHARING IT WITH OTHERS. I believe this has news can have great impact in the world for healthier living.

Purpose Thru The Pain

Here is a link to the documentary which aired in the UK last Tuesday night on their national BBC-1 network. It is called “The Woman Who Wake Up Chinese” and stars my friend Sarah and a bit of Kay as well, some doctors and specialists and is EXCELLENT at describing the rarity of Foreign Accent Syndrome and how profound an affect it has on a person and those that love them.

Although the original episode cannot be viewed from the BBC site unless you live in the UK… there is a place to watch it free via YouTube. On YouTube you just search “The Woman Who Woke Up Chinese BBC Full) and you will see about a 43 minute video that you can watch from there. The entire video was closer to a full hour, so there is probably a few more minutes which we cannot see, however, the documentary is incredibly well done and is already having a profound effect on the WORLD! YES! More and more people are being exposed to Foreign Accent Syndrome’s existence which will help those not yet properly diagnosed, families and friends of the sufferers and especially the scientific community where so much of the doctor’s ignorance regarding FAS has actually done some harm to the people who don’t understand what is happening to them.

Since this videos airing, there has been a HUGE influx to the public Facebook Group called Foreign Accent Syndrome Awareness Group which I administrate as well as this Ellen5e.com site. This is very good for getting people informed. I cannot tell you how many people I have talked to in the last four and a half years who have been misunderstood, treated poorly and suffered greatly because of ignorance of so many people in regard to Foreign Accent Syndrome. It IS REAL!  It is VERY rare! And it needs more study by the medical community because of all that may be learned about the human brain and our ability to communicate.

Please take the time to watch this, and I would REALLY love to hear from you as to what your reaction is.

http://www.youtube.com/watch?v=Q_XZLbrrfRg

It is exciting for those of us who work together on the only known group for people who have Foreign Accent Syndrome (via a PRIVATE Facebook group) to be able to see the way in which those who are new to this journey will have better understanding and support than those who came before. God is really at work in the lives of people all over the world… right NOW… and I tear up with thankfulness that God is using some of us to offer comfort to others as only we can.

Here is a verse from the Bible that I feel explains how I am able to embrace the challenges in my life as a way of God preparing me to be of greater use to others.

2 Corinthians 1:3-7
New American Standard Bible (NASB)
 Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction so that we will be able to comfort those who are in any affliction with the comfort with which we ourselves are comforted by God.   For just as the sufferings of Christ are ours in abundance, so also our comfort is abundant through Christ. But if we are afflicted, it is for your comfort and salvation; or if we are comforted, it is for your comfort, which is effective in the patient enduring of the same sufferings which we also suffer; and our hope for you is firmly grounded, knowing that as you are sharers of our sufferings, so also you are sharers of our comfort.

I hope that this verse will become an anchor of steadiness to you as you go through various trials in your life. Yours may not be FAS, but ALL of us have troubles in this life. We cannot control their coming many times, BUT, we can control how we will respond.

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

 

 

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