Planning Director at McCann Erickson
ALS Patient (a.k.a. Lou Gehrig’s disease)
I am not a creator or an entertainer that people may know. However, I do have a few things to share through my fight against ALS. This has been a devastating yet invaluable experience. I grew up as an expat’s child in Europe, U.S., and Japan; I was an all star athlete in soccer, football and track; I work with the most talented and caring group of professionals at the biggest advertising agency; I am surrounded by hundreds of loving family and friends; I drank and partied like a rock star; But I have never truly realized or appreciated what I had been blessed with until I encountered ALS. Every value I have had has changed. I hope I can share some of this with you and inspire any kind of action to eliminate similar injustices. Let’s go.
so Radicut. the newly approved drug in japan ... it's not a cure and there is little data on progressed patients like me, but i trying it
2 weeks on, 2 weeks off, as one set. finished my second cycle . maybe 4 more ?
it IS DIFFICULT to see/ recognize the difference when i can only move my eyes, close my mouth, and barely lift my eyebrows ...
there are a few things i noticed
before, Radicut, my eyebrows were twitching ( which is a sign your nerves are under attack with ALS) AFTER RADICUT the twitching stopped and can move it smoother ... just a little bit.
it also feels like the range of movement wth my eyes got bigger ... and a little smoother ... a little
but this little bit is similar to a healthy body being able to walk or not
placebo affect ? couldn't give a fuck...
i'm not a doctor or anything but as the EXPERIENCED other countries need to allow this drug for ALS patients as well.
i wish i had access earlier
although i still do worry if movement will stop drastically when we stop the drug
oh well we'll see
one of the most emotional speeches i've ever given and i wasn't even there ...
my brother ross's wedding with his beautiful wife lauren on the right.
his mom and her husband in front.
my brother joe on the left delivering my message perfectly
my sister masako behind the camera
more fam behind her...
i've watched this about 100 times
wishing i was there, missing my life, watching what could've been...
but damn it was a good day! :) congratulations buddy
So, I'll be hospitalized for 2 weeks from Friday to start a new approved drug by the Japanese government called Radicut. http://www.alstdi.org/news/radicut-approved-for-als-in-japan/
It's not supposed to reverse symptoms or "cure" anything but it's supposed to slow it down drastically especially for ALS patients in their early stages.
the treatment continues for a while.
I did/do have hesitations about this.
1. It's for early staged patients, I would be considered a late staged one
2. It's not a cure... here I am yelling out "help! I'm in hell!!" and I'm told "we can't get you out... but we found a way for you to live there longer? Cool?" .... aaahhh... I get the logic but damn, I don't know if I should thank you or smack you ...
So why do it?
1. Hopefully it'll stop my eyes dying so quickly
2. I gotta TRY right?
So, everybody please pray that something goes wrong and the drug will work to reverse this torture . .
Friends, you know where I'm at. Hope to see you there