Spaghetti Legs

My legs are spaghetti! There hasn’t been any explanation a lot of debilitating physical trials that I am dealing with lately . In February I had dizziness, and spells of not breathing.  On March 17th I had the symptoms of a heart attack and then started having severe problems walking, thinking and severe fatigue. The weakness is overwhelming and very frustrating.

During a follow up appointment the doctor was performing some routine neurological tests when I realized I had a bad problem. I was not able to balance when standing unsupported and my legs close together–could NOT do it! As soon as I lifted my hands from the support of the exam table and the countertop to stand unsupported; my right leg automatically widened its stance. “No. Put your feet close together,” the doctor repeated, “Now, lift your hands”. Immediately, it happened again! But this time when I forced my right foot closer to my left one, my right leg felt very wobbly and started to shake. On the third try my right leg shook violently and then folded like a ladder. “Oh, oh”… I began to cry as I realized this was not good. I was okay if  I took a wider stance, locked my right knee or had my hand on the counter or a piece of solid furniture, but I was unable to stand independently with my feet close together?

Since I was having super bad fatigue and that makes my Foreign Accent speech much worse, the doctor continued the questions and observations with my husband. They drew a little blood and said to watch for signs of stroke.

The next few days brought increased functioning challenges to the point where I went into the hospital ER and overnight stay. MRI, CT and other tests didn’t show a stroke or tumor, but the medical professionals did not have an explanation for what is happening.

On March 18th I started “wall-walking” (my hand lightly resting along the wall as I walk unless I start to lose balance). Within two days it had gotten much worse; I would “cruise” with “furniture walking” just like a toddler I needed the security of a solid piece of support to grab or catch me if the leg whimped out.

Within four days, I went from unsteady walking to super weak, unreliable right leg and extreme weakness that would not pass even when non-weightbearing. I began to feel as though I was actually losing muscle. I especially became fearful when I would wake up in the middle of the night or first thing in the morning and feel weak/paralyzed in my legs.

Just trying to extend out my leg for five seconds from a seated position was causing a shake and took incredible effort. I was way too weak!! So the neurologist that I saw about a year ago in regard to FAS and headaches saw me for this new problem. She also, did not have an explanation, but ruled out the severe diagnoses of cancer or stroke. The doctor referred me to Physical Therapy treatment and then to follow up with a Psychologist that deals with neurological patients. The latter of which can’t even see me for the first time until eight more weeks!

In the meantime… I am going to PT (physical therapy) and trying to work on my gate. I will talk about that in another post.

It has been a challenge to try to do things by using a walker and getting so extremely tired after doing the smallest little thing. Have you ever thought about how a person prepares their dinner, carries their plate, or vacuums their home?

As difficult as it is to walk, the challenge of keeping my spirit from being sucked down by the sinkhole of no energy and weakness is even harder. The focus of my prayers has been on God . . .  WHAT is going on? WHY is this happening? WHAT am I supposed to do? When symptoms seem to be worsening and not improving, I find it more difficult to “take every thought captive” and aligning it to what God says is TRUE!

I know that depression is a natural reaction to chronic medical conditions, but I am determined to avoid the medical world’s tendency to automatically take an antidepressant pill to deal with the effects. Rather, I am thinking SUPERnaturally; by God’s grace I will remain grounded in God’s Word and in prayer so that I can endure the trial and grow through it rather than be taken down by it.

When the twinges of sorrow and pain grasp me, I  remember that I am held even closer and tighter by our Almighty God who is my strength.

These verses in the Scriptures are very encouraging — James 1:2-4 “Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing.”

This promises that the very reason I am going through this trial is because I was already lacking in something that I will be rewarded with as I continue to run the race . . . even if on spaghetti legs.  TGBG

“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” !

Keep on Looking

"Am I overlooking something?"

Just a super quick note to thank you for your patience while my host server issues for my wordpress blog were fixed. I know it’s been down a while and I am WAY over due for a LOT of posts. However, I am on my way to a big meeting. So will come back and write more later.

 

In the meantime, this is to let you know “WE FOUND IT”….the problem’s been addressed and we are ready to FLY.

Should you be computer challenged I know of a superb Geek to recommend… @Codatory.  Thanks Alex!