ME GETTING THINGS OFF MY CHEST AND MAKING FUN OF MYSELF

December 4, 2007

Ni HA-(hello in Chinese-pronounced-nee how)

I got an anonymous comment that said the youngest spontaneous case of ALS was a boy that was 12 years old. CAN THE ANONYMOUS “FIGURE”, PLEASE EMAIL ME AT SCHEMERA@YAHOO.COM. WE HERE ARE VERY CURIOUS IF THIS IS ON RECORD AND IF SO, WHERE AND WHEN. EVEN THE TOP NEUROLOGIST IN CHINA IS BAFFLED THAT A 20 YEAR OLD HAS IT LET ALONE A 12 YEAR OLD. AND I’M GOING TO EMAIL MY TWO NEUROLOGISTS AT YALE AND COLUMBIA AND ASK THEM-ANYTHING’S POSSIBLE. ONE OTHER THING, IF YOU’RE GOING TO LEAVE SUPPOSED FACTOID-PLEASE LEAVE YOUR NAME. I WANT TO BE ABLE TO RESPOND TO EVERYONE.

I GOT A SURPRISE VISIT DURING MY OCCUPATIONAL THERAPY. THIS GENTLEMEN NAMED DB FROM CALIFORNIA FOUND MY EMAIL AND BLOG ON GOOGLE AND HE EMAILED ME. ASKING WHAT I THOUGHT OF STEM CELLS AND IS IT HELPING. HIS FATHER HAS ALS.

SO I WROTE HIM A 3 PAGE LETTER ANSWERING ALL HIS QUESTIONS AND GIVING MY OPINION ON HIS FATHER COMING HERE AND THE BENEFITS. I EVEN EMAILED A FRIEND THAT IS AROUND HIS FATHER’S AGE. THIS GUY (BOB) HAS HAD ALS 10 YEARS AND STILL DRIVES AND GETS AROUND. HE’S ONE OF THE FEW THAT HAS HAD ALS FOR THIS LONG AND STILL MAINTAINS A HIGH QUALITY OF LIFE. BOB EMAILED DB AND ECHOED THE SAME MESSAGE THAT I SENT HIM. “WHAT OTHER OPTIONS DO YOU HAVE AND WHAT DO YOU HAVE TO LOSE”. SO, I AM DOING MY FINGER EXERCISES AND IN WALKS DB AND HIS MOTHER. NICEST GUY. HE IS FROM SHENYANG BUT MOVED TO CALIFORNIA SOME TIME AGO. I WAS SO EXCITED THAT I HAD THAT KIND OF IMPACT ON SOMETHING AS GRAND AS STEM CELLS.
IT MEANS A LOT TO ME TO HELP AND EDUCATE.

I AM GOING TO MAKE FUN OF MYSELF NOW:
I WAS HANGING WITH MICHAEL FROM THE UK-THE 20 YEAR OLD. I WAS TELLING HIM WHAT I DO AT HOME TO MAINTAIN A STEADY LEVEL IN MY CHALLENGE. EATING, EXERCISE, STRETCHING, ACUPUNCTURE, BELIEVING, AND HOW I DON’T USE ANY ASSISTANCE WHEN I WALK-I TOLD HIM THE DAY I USE A WALKER OR A CANE IS THE DAY I GIVE IN OR I’M CRAWLING. THAT PART FOR ME IS A MENTAL GAME I HAVE PLAYING IN MY HEAD-AND I DON’T LOSE!! YOU CAN FEEL WHAT’S COMING-I LEAVE THE ROOM FOR LUNCH AND AS I DO I BUMP MY RIGHT SHOULDER INTO THE DOOR. WELL, THAT THROWS ME OFF BALANCE AND I KNOW I’M GOING TO FALL BUT I HAVE LEARNED HOW TO FALL. SO I TWIST MY BODY TO LAND ON MY SHOULDER TO SOFTEN THE BLOW. BUT I GO DOWN HOLDING A BRAND NEW COLLECTION OF DVD’S AND THEY GO FLYING AND BREAK!! MAN IF THEY HAD AN OLYMPIC EVENT FOR HOW TO FALL GRACIOUSLY-I WOULD HAVE WON THE GOLD. WHILE I’M DOWN I START LAUGHING. IT WAS FUNNY! THERE MUST HAVE BEEN 10 NURSES AND 20 PEOPLE THAT RUSHED OVER AND HELPED ME UP which was awesome.

I SAID TO MIKE AFTER, “I WILL FALL AGAIN AND AGAIN BUT THE KEY W/ME IS ALWAYS GETTING UP-SHRUGGING IT OFF AND MOVING ON”.
AFTER ALL THAT JARGON ABOUT NOT USING ASSISTANCE WHEN I WALK-MY FOOT WAS DEEP IN MY MOUTH.

SO I FELL, BIG DEAL!!

December 5, 2007

NI-HA

I COULDN'T SLEEP AND I’M WRITING TO CLEAR MY HEAD. WHAT A SHOCK-THE INTERNET IS ONCE AGAIN-DOWN.

YOU KNOW THAT I HAVE THINKING A LOT ABOUT LEAVING HERE AND IF I WILL MAINTAIN THE POSITIVE SIDE AFFECTS FROM THE TREATMENT. WHEN I LEFT NANSHAN HOSPITAL IN JUNE I REALLY HAD NO EXPECTATIONS ON HOW LONG IT WILL LAST. AND WHEN I CAME THIS TIME MY EXPECTATIONS WERE LOW BECAUSE I KNOW MY BODY AND THIS CHALLENGE ALL TOO WELL. YOU’RE SUPPOSED TO DECLINE-SO I HAD IT IN MY MIND THAT IF I CAN JUST MAINTAIN WHAT I HAVE THEN I WOULD BE WINNING BUT NOT SATISFIED. AND I DON’T LIKE TO THINK THAT WAY-BEING COMPLACENT IS FOR PEOPLE WITH ABSOLUTELY NO DRIVE-SORRY IF I OFFENDED ANYONE BUT THAT’S NOT A WORD IN MY VOCABULARY!!!!!!! GETTING BETTER AND STAYING ALIVE IS THE ONLY GOAL AND IF THAT MEANS MAINTAINING WHAT I HAVE THEN I’M FINE WITH THAT-MAINTAINING IS BY NO MEANS A LACK OF EFFORT-IT’S WINNING IN MY WORLD FOR NOW. WHAT F-IN’ CHOICE DO I HAVE.

I’M IN A WORLD WHERE YOU’RE MEASURED BY MAINTAINING AND BY HOW MUCH WORSE YOU GOT SINCE YOUR LAST VISIT-THAT SCREWED UP-WHEN MY DOCTORS SMILE AT ME AND SAYS, “WELL YOUR LEGS ARE A LITTLE WEAKER THAN 2 MONTHS AGO-WAY TO GO DREW”. I WANT TO KNOCK HIM OUT! BUT AT LEAST IT’S WINNING-FOR NOW. I’M FIGHTING WITH ALL THE MENTAL AND PHYSICAL STRENGTH I HAVE TO GET BETTER AND MAINTAIN. I WENT INTO THIS W/THE ATTITUDE OF CARRYING AWAY SMALL ROCKS TO EVENTUALLY MOVE THE MOUNTAIN. LIKE MY BALANCE AND HANDS. SMALL THINGS LIKE, TYING MY SHOES AND BUTTONING MY PANTS. I HAVE EXPECTATIONS FOR MYSELF THAT I DON’T SHARE W/ANYONE BECAUSE THEY’RE MINE AND NO ONE WILL NOTICE ANYWAY BUT I DO AND THAT COUNTS TO ME. I HAVE IMPROVED BEYOND MY EXPECTATIONS AND IT’S BECAUSE OF MY DIET-THERAPY AND THE STEM CELLS. ASIDE FROM TWO FALLS-MY BALANCE HAS BEEN SO TIGHT. I CAN BASICALLY RUN UP THE HALLWAY AND THROW AND CATCH AND I’VE HAVEN’T COME CLOSE TO FALLING. SO THOSE TWO FALLS WERE TWO ISOLATED INCIDENTS. THAT’S ALL.
I CAN DO SOME OF THE LITTLE THINGS AND THAT’S FINE W/ME. FOR NOW----AND I WILL BE BACK HERE IN THE LATE SUMMER OR IF I START GET WORSE-SOONER.

BYE FOR NOW-HOPE YOU ENJOY THE PICS
LOVE YA-KEEP THE SUPPORT COMING,
DREW
THESE ARE FROM A GREAT FRIEND OF MINE-JEN
"Whatever the mind can conceive it can achieve"

"Whether you think that you can or you can not, either way you are right"