Saturday, March 8, 2008

LITHIUM/ALS UPDATE

HEY PEOPLE,


HOPE ALL IS WELL.


IT'S BEEN THREE WEEKS ON LITHIUM AND I'M FEELING NO SIDE AFFECTS EXCEPT FOR MY EYES BURNING. THAT IS QUITE COMMON WITH THE PALS I'VE TALKED TO. MY DR. AT COLUMBIA SAID ABOUT 1 MONTH TO GET MY BLOOD LEVELS UP TO PAR. PEOPLE I'VE TALKED TO THAT HAVE BEEN ON IT FOR OVER A MONTH HAVE REPORTED IMPROVEMENTS. AND THERE ALSFRS-R SCORE ARE THE SAME OR BETTER. THE ALSFRS-R SCORE IS HOW ALL OF US PALS ARE MEASURED. 48 BEING THE BEST 0 BEING THE WORST. I'M AT 42-- I WAS A 47 WHEN I GOT Dx IN SEPT 06'. IT WILL BE 2 YEARS IN JUNE THAT I FIRST NOTICED MY SPEECH WAS CONSISTENTLY WORSENING. THE DR. AT YALE GAVE ME 1.5-2 YEARS TO LIVE IN JULY 07' AND I LAUGHED AT HIM AND TOLD HIM-NOT ME!! NO WAY I'M LEAVING THIS EARTH WITH OUT BEATING THIS F%$3ING DISEASE. AND LIKE I SAID BEFORE, I HAVE UNFINISHED BUSINESS W/ SOME OF YOU.


YOU CAN SEE WHAT THE QUESTIONS ARE ON THE ALSFRS-R TEST BY GOING TO:

http://alslithium.atspace.com/alsfrs-r.html


HEY, I FOUND OUT ONE OF THE GUYS I KNOW FROM BACK IN THE DAY HAS ALS-HE IS 38. I EMAILED HIM-WE WERE LIKE HOLY SHIT. DECEMBER 06' WAS HIS Dx. MAN IT'S A SMALL WORLD. IT'S SO SAD WHEN YOU LOOK INTO THE FUTURE AND YOU SEE PEOPLE THAT ARE FURTHER ALONG IN THERE IN THE Dx. EVERYONE ENDS UP THE SAME WAY. AND WE PALS KNOW HOW THIS MOVIE ENDS. IT'S SCARY. BUT YOU HAVE TO LIVE IN THE DAY-RECENTLY MY FRIEND DAVE FROM MICHIGAN (A HUGE HOCKEY FAN AND PLAYER) SENT ME A BOOK AND CD OF A PRIEST WHO HAS HAD ALS FOR 7 YEARS. HE PREACHES THAT THE FUTURE HOLDS NO GUARANTEES AND THAT WE SHOULD LIVE IN THE DAY. MAKES SENSE! THANKS DAVE.

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