Author: Jenny

In March 2004, I suffered a severe brainstem stroke, & was "locked in" for several months". I have been married to a wonderful man, Mark ever since Dec. 1994, & we have 3 kids: Zach (1997),, Jessica (2000), & Sophie (2002). I have been blessed in so many ways by God, so I wanted to keep a blog to share my recovery, life, & answer questions.

THE HOUSE EPISODE cont.

I LOVE ODD HOLIDAYS, SO I HAVE SOME ON A CALENDAR IN MY ROOM! IT’S “BLAME SOME1 ELSE DAY.” I LAUGHED SO HARD WHEN FIA TRIPPED, & BLAMED ME 4 TRIPPING!

BTW, IN THE HOUSE EPISODE, NOT SURE I WAS CLEAR. DON’T DOUBT HOUSE’S IMMEDIATE DIAGNOSES, I WAS REFERRING 2 A QUICK RECOVERY. IT’S ALMOST AN INSULT HOW OFTEN SOME1 WHO IS LOCKED-IN RECOVERS SO FAST ON TV. MANY NEVER DO. OR RECOVER SLOW, LIKE ME. I MEAN, I HATE THAT SOME1 VIEWING THE SHOW MAY NEVER KNOW THAT THE CONDITION NEVER MAY GO AWAY, & THERE R THOSE WHO MIGHT SPEND YEARS WITH MINIMAL PROGRESSION, & NEVER COMMUNICATE VERBALLY AGAIN. ACCORDING 2 TV, IT IS NO WONDER THAT WHEN I GO OUT, PEOPLE R ALARMED THAT I CAN’T TALK! I RECOGNIZE THE TIME CONSTRAINTS, BUT TV IS A GREAT WAY 2 EDUCATE PEOPLE OF THE CONDITION, & I HATE THAT IT IS ALWAYS PORTAYED AS SOMETHING U’LL DEAL WITH BRIEFLY!

ALSO 4GOT 2 MENTION HOW I LOVED THE GUYS COMMENTS WHEN HOUSE WAS EATING FRIES IN FRONT OF HIM! FELT THAT ALL THE TIME, BUT THERE’S NO WAY 2 EAT IT, SO U JUST WISH U COULD. I ALWAYS WANTED CHARLSTON CHEWS WHEN I SAW THEM, & THOUGH I NEVER REALLY DRANK PEPSI, EVERY NURSE DID, & IN FRONT OF ME, SO MY 1ST CRAVING WAS PEPSI! LOL

HOUSE EPISODE

IN CASE U MISSED THE HOUSE EPISODE: (http://www.fox.com/fod/play.php?sh=house, EPISODE “LOCKED IN”)

DECIDED 2 POST ABOUT IT, SINCE IT’S A COMMON QUES., & DECIDED I’LL TYPE ONCE INSTEAD OF A BUNCH OF TIMES…

OVERALL, I WASN’T THAT IMPRESSED. THE CAMERA MOVED WAY 2 FAST. I AM SSSLLLOOOWWW. &, AT 1ST, I WAS LIMITED 2 VERTICAL EYE MOVT. I AM STILL EXTREMELY LIMITED W/RT. HORIZONTAL MOVT…I CAN’T LOOK VERY FAR 2 MY RT.

I WAS GLAD THEY BEGAN THE SHOW W/THE GUY FREAKING ABOUT ORGAN DONATION. I DON’T RECALL IT, BUT SEEMS A COMMON THING AMONG “STROKEES.” MY STROKE GROUP WAS RECENTLY DISCUSSING SIMILAR MEMORIES, & ASKED, “If one thinks there is no hope at all then why even try??? Why even bother and just give up and end up either dying or become the self fulfilling prophecy they were slated to become in the first
place?”

MY RESPONSE: I CLEARLY RECALL BEING TOLD THAT I WAS “LOCKED-IN” (HOWEVER, IT WAS ABOUT 3 MO. AFTER MY STROKE, THAT I EVEN KNEW I HAD A STROKE ) & BEING TOLD THAT I COULD NEVER TALK AGAIN, & WOULD NEED A MACHINE 2 BLINK AT, & TALK 4 ME. THIS WAS SIMPLY UNACCEPTABLE, & LIT A FIRE 4 ME. STILL CAN’T FLUENTLY TALK, BUT CAN SAY “YES” OR “NO”, “HI” & “BYE”, ETC. SO, I THINK IT DEPENDS ON THE PERSON…

BACK 2 THE SHOW…THE POSITIVES:
1. I WAS TOUCHED WHEN HIS KIDS CAME, BECAUSE MANY MEMORIES RETURNED. IT WAS THE ONLY PART I CRIED ON…
2. I COULD RELATE 2 VENOMLY HATING AA DOCTOR, & THERE’S NOTHING U CAN DO ABOUT IT.
3. I ALSO HAD MY 1ST MOVT. W/A THUMB.

MY LEAST FAV. REMARK WAS HIS COMPLAINT OF BEING LOCKED-IN FOR 3 DAYS (POOR BABY!) & HIM GETTING BETTER BY THE END. WHENEVER THIS CONDITION IS SHOWN, BESIDES IN “THE DIVING BELL…” MOVIE, W/IN DAYS THEY R BETTER. AS FAR AS I KNOW, IT TAKES YEARS, IF U R LUCKY 2 MOVE!

HOUSE

On the upcoming episode of House on Monday night (7 PM CENTRAL) it’s about a guy that’s locked in IDK if it’s due to stroke or not but they’re doing an episode on it. I’M NOT 2 EXCITED—IT’S SURE 2 EITHER MAKE ME PBA CRY, OR BE REALLY HORRIBLE (LIKE THE 1 ON ER, ABOUT 4 YRS. AGO), BUT THOUGHT I’D MENTION IT.

DOING IT YOURSELF

A WHILE AGO, I GOT A HUGE KICK OUT OF THIS: MY CAREGIVER’S (CARA’S) MOM WAS HERE. OFTEN, HER MOM WOULD ATTEMPT 2 DO SOMETHING, & NEEDED CARA 2 EXPLAIN SOMETHING. RATHER THAN EXPLAIN, CARA WOULD JUST TELL HER MOM 2 LET HER DO IT HERSELF!

AH! WELCOME 2 MY WORLD! NOW, FINGERSPELL EVERY DETAILED DIRECTION U’D GIVE 2 SOME1!

IT IS SOMETIMES EASIER 2 JUST DO IT YOURSELF. EVEN I CAN DO IT MYSELF OCC.—RATHER THAN TRY EXPLAINING IT, THEN GIVING THE NECCASSARY ORDERS 2 HELP ME ACCOMPLISH SEVERAL SMALLER TASKS (THAT ADD 2GETHER, 2 MAKE I BIG TASK), IT CAN BE ALARMING WHAT I’M CAPABLE OF, WHEN I JUST PUT MY MIND 2 IT, & TRY. IT MAY NOT EVER WORK, OR IT MAY NEED SEVERAL TRIES (I’VE SAT AT A LIGHTSWITCH FOR 15 MIN., DETERMINED 2 REACH HIGH ENOUGH 2 TURN ON THE LIGHT), BUT IT’S WORTH TRYING!

PLUS, THERE IS AN ADOMITABLE (SP?) WILL THAT UNCOVERS ITSELF WHEN THERE IS A ROADBLOCK. I DISCOVER I’M CAPABLE OF DOING MANY MORE THINGS, BECAUSE I GET TIRED OF ASKING 4 SOMETHING, & OPT 2 JUST TRY ON MY OWN 2 DO IT…THIS HAS MADE ME CAPABLE OF PUTTING CDS INTO MY COMP., REACHING ITEMS FAR AWAY, GETTING & USING KLEENEX, HAVING THE ABILITY 2 REACH UP, & FEED MYSELF A TREAT, & MOST RECENTLY, BRUSH MY HAIR! (NOT STYLE IT, BUT BRUSH OUT MY DRIED, TANGLED HAIR, JUST BECAUSE I SAW A BRUSH LYING W/IN MY REACH, & THOUGHT, “I WONDER…”)

I LEARNED THIS WHEN HELPING FIA CLEAN HER ROOM W/MY LASER POINTER. IT WAS SLOW GOING, AS I’D POINT 2 EVERY SINGLE ITEM THAT NEEDED 2 BE PUT AWAY, BUT EVENTUALLY, HER ROOM WAS CLEAN!

“STOKE-AVERSARY.”

WENT 2 DALLAS & OKLAMOMA LAST SUN. 2 WED., & IT’S BEEN CRAZY BUSY EVER SINCE. 2 BAD IT’S COMPOUNED BY MY DOUBLE VISION (WHICH ONLY WORSENS W/O FOCUSING 2 READ), BEING SLOW, & TYPING W/1 FINGER.

MON., 3-16, I “CELEBRATED” MY “STOKE-AVERSARY.” It was 5 yrs, ago, & they said I would die – WRONG!
They said I would never move again — WRONG! NOT ONLY DOES MY HEAD & MY RT. ARM MOVE, BUT I CAN LIFT MY LEGS, BEND FWD, PLAY SOME INSTRUMENTS, & IF HELD RT., I CAN EVEN WALK!
They were not sure if I would swallow or talk – WRONG! I CAN EVEN SUCK A STRAW, BITE A LITTLE, & FEED MYSELF!
I ONLY SAY A FEW WORDS, BUT AM GETTING BETTER.

I DON’T SUGGEST LISTENING 2 ANY DOCTOR OR THERAPIST ABOUT THE TIME 2 RECOVER. THEIR JOB IS 2 PREPARE U 4 THE WORST OUTCOME POSS., & MINE WAS DYING, OR NEVER MOVING OR TALKING AGAIN (JUST BLINKING) …

I WAS TOLD THAT IN THE 1ST 9 MO., I’D RECOVER THE MOST THAT I’D GET BACK, OF WHATEVER I’D NOW BE CAPABLE OF. HOW I DREADED THAT 9 MO. MARKER, & AT 9 MO. POST STROKE, I COULD DO EXTREMELY LITTLE! HECK, I COULDN’T MOVE EVEN A MUSCLE 4 LIKE 5 MO.!

IT’S A VERY SLOW RECOVERY–I EXPECTED 2 BE UP & DOING MY KID’S LAUNDRY IN 1 YR.–& I’M STILL WAITING 2 BE UP. BUT I AM WAITING. SOMEDAY, I HOPE 2 MAKE THE MANY PRAYERS & WISHES 2 SANTA, IN MY BEHALF, COME TRUE! I HAVE A DREAM 2 JUST WALK ENOUGH, 2 BE ABLE 2 DO THINGS LIKE POTTY MYSELF! LOL

SO GLAD I REFUSED 2 BELIEVE THAT MY RECOVERY TIME WAS UP AFTER 9 MO.! I CAN DO SOOO MUCH MORE!

THE HARDEST PART HAS PASSED……I LIVED. I’M NOT JUMPING FOR JOY CAUSE THIS HAPPENED, BUT AM THANKFUL IT HAPPENED AT THE AGE I WAS. BEING YOUNG HELPS…DOUBT I’D BE AS MOTIVATED IN MY RECOVERY, IF I WAS 85 YRS., VS. 35 YRS.! PLUS, MY KIDS WERE AT A GOOD AGE—I WOULDN’T WANT FIA ANY YOUNGER THAN SHE WAS (BARELY 2 YRS.) WHEN I HAD MY STROKE, BUT IT HAS BEEN A BENEFIT 2 HAVE HER GROW UP IN MY RECOVERY. IN FACT, ACCORDING 2 FIA, WHO HAS AN ENORMOUS LIST OF FUTURE CAREERS, I HAVE A JOB I’M PERFECT 4: A MOM!
INTERESTING FACT: ZACH WAS ALMOST FIA’S AGE (ALMOST 7 YRS. OLD), WHEN I HAD MY STROKE.

I’VE COME SO FAR IN 5 YRS. & IT ONLY KEEPS GETTING BETTER.
COULD HAVE BEEN MUCH WORSE.

A STROKE SURVIVOR, Perry Stevens (http://www.lighthousebeam.com/giftbook.html) recently said:
“(I was told) ‘Never look how far you have to go!. Just look how far you have come.’ (That) really struck me. I
was just unresponsive laying in a bed with many tubes doing things for me (that)I
could not do myself. Now I am living at home and doing well, actually better
everyday, even after eight years my speech keeps getting better. With God on
my side there is no way I will quit trying to keep doing better in all that
I do.”