A few thoughts.
Moira Taylor passed away this weekend of MS at the age of 49.
We can all agree that there have been delays in the research of CCSVI. There is not enough funding for research. There is no large university trial underway. There is debate over whether outflow obstructions from the brain are abnormal or a variation of normal, even when the outflow obstructions are due to malformation of the valves, not a variant of valves, but abnormal malformed valves. The CCSVI story broke in 2009, and it is now 2012. In those three years, how many have passed away of MS? How many will pass away in the next three years? How can we be patient, how can we not advocate for compassionate treatment, not tomorrow but today?
Moira Taylor's mother mentions that she loved bright colors.
Prior to my treatment for CCSVI, I would have told you I loved bright colors too. My favorite color was red, and had been for as long as I could remember. Yellow was my next favorite, and orange after that. But it turns out I loved the brightest colors because my color perception was dimmed. Since my procedure, I have been seeing colors as being brighter and more saturated than I ever knew they could be. It is the single most surreal outcome of the procedure for me. And while I still appreciate the color red, my favorite color is now a more subdued blue.
What if Moira Taylor loved bright colors for the same reason I did? What if she could have experienced them brightening, as I have?
Moira asked for her body to be donated to medical research, to try and find out what causes multiple sclerosis.
What if, like the majority of the MS patients in the autopsy research by Cleveland Clinic, she had intraluminal outflow obstructions of the jugulars and the azygous? What if the medical research shows that she might have been spared had this been known in time, had she been treated in time? What if we are in the midst of a tremendous breakthrough in the understanding of MS, and it did not come soon enough?
Her funeral is on Saturday. All are welcome, but are asked not to wear mourning colors or black. Because she loved bright colors.
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this is another tragic story. Thank you for sharing your thoughts on it with us.
Moira was too young. Jeff is 48, I'm 49....and we're far from ready to go.
I read a recent news story about a brilliant lawyer in LA who took her own life, because she was losing her ability to think due to her MS. She lived 15 miles from me and Jeff, and had probably never heard about CCSVI, or Jeff's relief of cog fog and fatigue, and his return to the work he loved.
http://laist.com/2012/01/25/criminal_de ... mitted.php
There is barely any understanding or research in CCSVI happening at our American universities or research labs.
That's why a group of us have started writing our government representatives.
We hope to have hundreds of letters in front of the MS Caucus members before MS Awareness week in March.
All US citizens can write to their representatives. We even have a letter formatted to help you, along with all of the addresses.
Here's the info:
Canada has lead by example. I think we can raise awareness in our own country, too.
dx dual jugular vein stenosis (CCSVI) 4/09