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195029.wmv SamiBebe2 294 views Susan, you did a great job!
Off Hospice and stable!!! SamiBebe2 627 views Thanks for your prayers!
SamisCabana SamiBebe2 1,787 views It's getting harder, but I am still here
The end of the episode-Dystonia storm SamiBebe2 3,179 views posturing (painful) and dystonia in my legs...tapering off. I want to know what the name of that strage postured arching of my foot is. Anyone? Sometimes, especially if I a...
The way Dystonia works SamiBebe2 3,249 views Posturing, Dystonia, and Myoclonic Jerks. I was shaking already, but hopefully without sound you can see. this episode lasted 20 minutes no matter how I had my legs positi...
about Now-Hospice SamiBebe2 1,380 views It was so simple, and so scary.I did the best I could to cover just what happens when one starts hospice. There is so much more benefit i would like to get into later. A f...
You asked-I aswered about botox SamiBebe2 280 views I had some good, some bad outcome. You just need to do what you think is right.
thank you Becky! SamiBebe2 713 views merry christmas God=Love
Positive Babinski Upper motor neuron disease SamiBebe2 49,415 views cousin performs babinski test (because anyone can) and my toes look like Daffy duck. We were having a non-important conversation for distraction. Sorry, i am down to whispe...
The Eyes Have It.wmv SamiBebe2 694 views Anyone have any bright ideas about how this can happen? An up-close view of the hanging ptosis in my left eye and the wandering of my right one. see http;//samibebe.livejou...

About Sami Pennington

multiple system atrophy, dysmetria, POTS, Dysautonomia, MSA, Parkinsons, dysarthria, dystonias, autonomic failure, spasmodic torticollis, dysarthria

samibebe.livejournal.com

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SamiBebe2

Latest Activity

Jan 18, 2012

Date Joined

Jul 1, 2008

About this user

My name is Jessica Sam Pennington. I am 44 Years old and I have MSA (Multiple Sysytems Atrophy) I am the mother of four adult sons. I was diagnosed with MSA finally in 2007. I knew as far back as 2005 that it was what it was. The symptoms began almost immediately following the first of three head-on car accidents in 1998. On November 29, 1998, I rear ended a stopped vehicle while doing almost 50 miles an hour and never used the brakes. The hospital said I was okay, but I was far from alright as the symptoms following the accident have morphed considerably into a very serious neurological disorder.I had another accident Nov 1999 and again March 2000. I have had MSA since the last one (as far as I figure) I am a happy woman with much on my plate, but my greatest desire is to see a cure for Parkinson type disorders. I am a part of several cause groups and forums, applications and the M.J. Fox Foundation. I do not work for anyone. I simply want to help those in the same situation as myself. Three things tend to take people like me out of this life.

1. Pneumonia-the movements begin to stop, the body becomes "frozen" and adequate oxygen is not moving through the body
2. Cardiac Arrest as the result of chronic arrhythmia
3. Suicide-I am doing all I can to help prevent this.

I believe that people like me, in my position want understanding. The disease itself, causes a series of total losses in every aspect of your life except for your intellect. Dementia is only seen very late in the disorder.
We just need love.
I have been seen by the University of Penn, John Hopkins and the NIH. All told me that because there is no cure for Parkinson, there is no cure for me, or others like me. I have been to four other hospitals and they all agree that what I have is quickly fatal.
I was denied DBS as I was too advanced in the disease and would lose my ability to speak entirely if I did have the surgery. Four out of 5 patients diagnosed with early onset Parkinson, have MSA. Roughly 85% or more go without a diagnosis entirely. Only on autopsy can the disease be determined. The areas of the brain affected, affect all involuntary and voluntary systems of the body, hence the name Multiple systems atrophy.
The MSA playlist has all symptoms I have minus the drooling of ALS, That is the reason for the list. This illness has many sides to it. A very complex disease.
God Bless you all. Everyone who watches these clips. I hope you see where my faith comes from. I hope you realize that you are never alone, that there are thousands of people out there with movement disorders and only few have a defined cure. Please feel free to pass these along to anyone suffering from this condition.

I am fortunate to have a huge support group and a relationship with God that sustains me. It is Oct 2011. I became a disciple of Christ November 27, 1988 at the Denver Church of Christ and have been giving my life to God (tripping and falling) ever since. Any hope I have, comes from the love of Christ which sustains me.

Age

Hometown

Boulder Colorado

Country

United States

Occupation

Disabled

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