Wednesday, February 6, 2008

MY CLOUMBIA PRESB. HOSPITAL VISIT AT THE ELEANOR AND LOU GEHRIG CENTER FOR ALS

HEY ALL,

AS YOU MAY OR MAY NOT KNOW-I WENT TO COLUMBIA LAST THURSDAY TO MEET DR. ANDREWS. SHE WAS GREAT--- THOROUGH AND EXTREMELY CURRENT. ANDRA AND I WENT ARMED W/ QUESTIONS ABOUT A LITHIUM STUDY THAT WAS DONE IN ITALY THAT SHOWED OVER A 15 MONTH PERIOD TO BRING ALS TO A STANDSTILL. IN LOW DOSES IT SHOWED THAT THE PROGRESSION OF ALS SLOWED TO A SLOW CRAWL. GREAT NEWS. THE WHITE PAPER IS GOING TO BE PRESENTED APRIL 16TH BUT NEWS HAS SPREAD LIKE WILD FIRE. DR. ANDREWS KNEW ALL ABOUT IT AND SAID IT WAS A REPUTABLE STUDY. SHE ALSO ENCOURAGED ME TO TRY IT-SO I AM IN TWO MORE WEEKS.

I HAVE TO WAIT TILL MY MUSCLE TREMOR AND ANTI-SPASTIC MEDICATION IS TITRATED. MEANING I HAVE TO BUILD UP TO MY REGULAR DOSAGE-3 PILLS A DAY:

IT IS CALLED-BACLOFEN AND IT IS USED IN PATIENTS WHO HAVE MS BUT SINCE I AM STILL REALLY STRONG AND MY MUSCLES SHOW NO SIGN OF ATROPHY, SHE THOUGHT IT WAS A GOOD IDEA. THE REASON BEING-I HAVE BALANCE ISSUES. IT WOULD BE ONE THING IF I'M HAVING BALANCE ISSUES W/ LOSS OF MUSCLE BUT I'M HAVING THE ISSUES WITH MY MUSCLES INTACT. SO, I'M STRONG ENOUGH TO HOLD MYSELF UPRIGHT IF MY MUSCLES DON'T SPASM. OTHERWISE, I WALK LIKE FRANKENSTEIN!! HAHA. HOPING THE BACLOFEN WILL RELAX MY MUSCLES WHEN I WALK. RIGHT NOW IT'S LIKE WALKING WHEN YOUR MAKING A MUSCLE-TRY IT-WALK WHILE YOUR FLEXING YOUR MUSCLES IN YOUR LEG. IT'S HARD. I TAKE IT AT BEDTIME FOR THE FIRST WEEK TO GET MY BODY TO BECOME USED TO IT. AND THE 2ND WEEK-ONE IN THE MORNING AND ONE AT NIGHT AND THEN AT WEEK 3 -MORNING-NOON-AND NIGHT. AND THEN THE LITHIUM. I WILL LET YOU KNOW HOW THAT WORKS OUT.


What is baclofen?
Baclofen is a muscle relaxant and an antispastic agent. The exact way that baclofen works is unknown.
Baclofen is used to relieve the muscle spasms, pain, and muscular rigidity associated with multiple sclerosis.
Baclofen may also be used for purposes other than those listed in this medication


guide.



ENOUGH ABOUT THAT

I'M A PERFECT GINUEA PIG FOR ALMOST EVERY CLINICAL TRIAL THEY HAVE-SO THATS GREAT NEWS. WHATEVER IT TAKES!!!!!!!!

AND I'M TOTALLY HEALTHY FOR SOMEONE WHO HAS MY CHALLANGE. SO GOOD NEWS THERE.

COLUMBIA HAS THE MOST COMPREHENSIVE MULTI-DISCIPINED ALS CLINIC IN THE USA-SO GOOD NEWS THERE TOO.



MORE TO COME..............

THAN YOU AGAIN FOR ALL OF YOUR SUPPORT-YOU PEOPLE ARE TRULY AMAZING!



LOVE YA,

DREW

4 comments:

Kevin said...

Hey Drew,

That is fabulous news man! Pulling for you bigtime behind the scenes here and think about you daily. You couldn't be in better hands and you will beat this!!!

Kev and Terry

Anonymous said...

Keep fighting Drew....in my thoughts every day!! Do not quit!
xo-
Sue C.

DixieMartn said...

Drew,
This is truly wonderful news! If anyone can beat this, you can. I'm pulling for you.
Love,
Gina

Anonymous said...

This great news Drew. We think of you and pray for you everyday.
Keep the Faith.
Love,
Michele, Bob, Faith, and Brian Somody