Saturday, August 18, 2012

I'm back...

...or at least I think I am.  My heart and mind really want to be back but my body says "I don't have enough energy.  I'm too tired.  I'll get to it tomorrow."  And tomorrow turns into a month and then five and I've missed recording many things said and experienced.  I do keep a daily journal but it is bare bones for the most part.

Last August I visited the MIND Institute in Davis, California to have confirmed a developing suspicion that I might have FXTAS (Fragile X-associated Tremor/Ataxia Syndrome).  Here is part of the definition which is posted on National Fragile X Foundation's web page.

"FXTAS is a late onset (over age 50) neurological condition. It occurs in individuals who have a specific change in the “Fragile X” gene, which is on the X chromosome. This gene is called the FMR1 gene. The specific change is called a Fragile X or FMR1 premutation. Individuals who have an FMR1 premutation are Fragile X “carriers,” meaning they may not experience any of the symptoms of Fragile X syndrome but “carry” the potential to pass the premutation on to their offspring (more on this below). Not all carriers will develop FXTAS, but all individuals with FXTAS have an FMR1 premutation. Researchers are investigating what other factors might contribute to FXTAS in FMR1 premutation carriers."

I am one in 8-16% of female carriers who develops it.  Here is a little history.  I have always enjoyed singing in groups, in choirs, along with the radio or a CD but about ten years ago I noticed I didn't enjoy singing as much because I couldn't sustain notes and then I noticed a slight quiver in my voice.  Then I noticed a tremor in my left hand and then I noticed my handwriting wasn't as neat.  At the MIND Institute I became part of a study and was put on Memantine or a placebo.  I did not notice any difference and just found out a few weeks ago I was indeed receiving the placebo.  I am happy because now (hopefully) I will receive something that will help with the tremors.

A week or two before we (Paul and I) went to Davis I was reading the scriptures and came across this verse from Deuteronomy 31:6 "Be strong and of a good courage, fear not, nor be afraid of them: for the Lord thy God, he it is that doth go with thee; he will not fail thee, nor forsake thee."  I have been at peace because I trust that God will go with me on this journey and that He will not fail me nor forsake me.  Little did I know how much I would rely on this verse in another situation that came to light in March of this year.