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.

MY COMPUTER

I’VE HAD A TOUGH WEEK. I ONLY SHARED A PART, BUT I definitely DESERVED AN UPBEAT DAY! FRI. WAS THAT DAY.

THINGS ARE BEING TAKEN CARE OF WITH MY EXTERNAL HARD DRIVE NOW. & DAYS B4 IT WENT HAYWIRE, I WAS PROMPTED 2 SEND OUT SEVERAL EMAILS THAT BENIFITTED ME 2. & THE DAY IT WENT HAYWIRE, I IMMEDIATELY FOUND, & SAVED THOSE EMAILS.

4 EX., MY MOM WAS PREPARING A TALK/SPEECH, & ASKED ME 4 HELP/ADVICE. I SENT SOME, BUT HAD SEVERAL “AFTERTHOUGHTS.” NOT SURE IF THEY HELPED HER, BUT THEY HELPED ME!

I’D TRIED (& FAILED RT. AWAY) 2 UPDATE THE FOLDER THAT CONTAINED THE FILES I SENT HER…LIKE 1 IS A COLLECTION OF MY FAV. QUOTES. SO, THE WHOLE FOLDER IS ABOUT 6 MO. OLD & MY FAV. QUOTES R NOT THERE.

WHEN I LOST MY EXTERNAL HARD DRIVE, I WAS SAD THEY WERE GONE…BUT SINCE I’D JUST SENT IT 2 MY MOM, I LOCATED MY EMAIL I’D SENT, & DOWNLOADED THE FILE. IN ADDITION 2 ALL MY FAV. QUOTES, I ENDED UP RETREIEVING 4 OUT OF 5 THINGS I’D JUST SHARED IN ORDER 2 “HELP HER.”

I ALSO HAVE A “JENNY-ESE” ASL CHART (WITH MY HAND, SHOWING “MY” WAY) THAT I HAD JUST FINISHED, BUT OPTED 2 NOT POST IT. IT’D TAKEN HOURS 2 MAKE—I COULDN’T QUICKLY “RE-MAKE” IT…BUT I’D MADE IT W/IN THE WEEK, & WAS IMPRESSED 2 HURRY & E-MAIL IT OUT, SO THE SCRAP. PG. WAS IN OLD EMAILS! I’VE LOST THE HUGE .PNG FILE (WHERE, IF I NEED 2, I CAN MAKE CHANGES), BUT THE .JPEG FILE WAS THERE! I LIKE THINKING I HAD SOME “HEAVENLY BACK-UP”!

BUT IT DIDN’T STOP THERE! I FELT I SHOULD LOOK INTO AN ONLINE BACK-UP SERVICE…W/VERY LITTLE RESEARCH—I ALMOST SEEMED LED THERE, I “HAPPENED UPON” A BACK-UP CO., CALLED “CARBONITE.” IT SEEMS 2 GOOD 2 BE TRUE, & CONSIDERING RECOVERY COSTS, WELL WORTH IT! IT CONTINUALLY—DAILY, IN MY CASE, BACKS-UP ANYTHING I REMOTELY CHANGE OR SAVE–& I DO NOTHING! & WHEN I SWITCH COMPUTERS, SUPPOSEDLY I CAN GET IT ALL ON MY NEW COMPUTER, BY ELECTING 2 RESTORE MY DATA!

BUT WAIT—THERE’S MORE! FOR 5 YEARS, I’VE SADLY FOUND NO PHOTOS OF FIA’S 2ND B-DAY. IT WAS 2 WEEKS PRIOR 2 MY STROKE. IT WAS THE LAST CAKE I’D MADE (I ALWAYS MADE FANCY CAKES, LIKE MK’S, BUT I THINK MK’S SURPASSED ME—A HIDDEN TALENT HE ONLY DISCOVERED BY TRYING 2 UPHOLD MY TRADITION).

ANYWAY, I KNEW I’D PRINTED THE PICS, BUT THEY’D MOVED. I HAD THE DIGITAL FILES ON MY LAPTOP, BUT MY LAPTOP HAD DISSAPPEARED B4 I RETURNED 2 THE COMP.! THEN FRI., CARA FOUND PICS I’D LOST OF BOTH GIRLS’ B-DAYS IN FEB. & MARCH OF 2004 (I WASN’T EVEN AWARE YET THAT JESS’ 4TH B-DAY WAS MISSING IN PICS, SINCE I HAD MEMORIBILLA)!

& I’VE BEEN SAD 2 MISS JESS’ LAST 2 SOFTBALL GAMES, 1 DUE 2 CAR TROUBLE, & ANOTHER DUE 2 MUD–FIGURES THAT BETWEEN THE LAST 2 SOFTBALL GAMES, I’D MISS HER HITTING 3 HOMERUNS! BUT AS THE DAY CAME 2 A CLOSE, I WENT 2 A GAME WHERE SHE GOT 1 MORE HOMERUN…SO, I FINALLY GOT 2 C 1!

MY COMP. DATA IS GONE!

TUESDAY , MY EXTERNAL HARD DRIVE BUSTED, & I’VE LOST A LOT FROM THE LAST 6 MO.: SCANS I’VE DONE (I DO A LOT), LISTS CARA’S MADE (HOPE SHE HAS THEM), SCRAP. PGS. I’VE MADE (BEST I CAN DO IS COPY THE LOW RESOLUTION FILES ON MY WEBSITE), FREEBIES 4 DIGI. SCRAP., ALL THE WORK I DID W/MY MOM TUESDAY MORN., CARA’S UPDATED “TO DO” LIST, ETC. LUCKILY, ALL SCRAP. STUFF I BOUGHT SHOULD BE ON CDS, (MINUS FONTS, FREEBIES & SCANNED STUFF), & I THINK MY COMP. HAS MOST PICS, JUST NOT ORGANIZED (BUT I’VE LOST EVERY PIC. FROM MARK’S PHONE….) UNFORTUNATELY, I COPIED PICS IN MARCH, & HAD ALL THE PICS SINCE THEN (THAT I’VE DOWNLOADED), UNORGANIZED, BUT ON MY COMP., SO I DIDN’T EVEN TRY 2 COPY MY PICS (THERE WAS OTHER REASONS, AS WELL, 2 NOT COPY).

IT’S ALL BEEN THERE, WAITING 2 SWITCH COMPS., 2 MY NEW COMP., BUT I WASN’T READY & MY BURNER STOPPED WORKING, SO I COULDN’T BURN A BACK-UP. I STILL AM REFUSING 2 TRULLY DISCOVER WHAT’S GONE. NOT SURE IF IT’S DENIAL, OR FAITH THAT IT’S AN UNFORTUNATE, BUT TEMPORARY, POSITION.

A FEW DAYS AGO, MK ASKED ABOUT SWITCHING COMP. I WASN’T READY, BUT HAD AN URGE 2 COPY MY FILES, SO MY OLD COMP. HAD MORE RECENT COPIES OF MY FILES ON MY OLD COMP. I TRIED, BUT SOME WOULDN’T COPY, & I WASN’T SURE WHAT 2 DO…SO I STOPPED TRYING. WASN’T TIME 4 IT. WISH I’D FIGURED IT OUT!!

I’M CONVINCED R CAT, TIGER, IS 2 BLAME! HE KEEPS KNOCKING MY EXTERNAL HARD DRIVE DOWN FROM OUR COMP. SHELF. IT WAS WORKING FINE TUES. MORNING, NOTHING HAPPENED, IT STARTED MAKING CLICKING SOUNDS, & NOW ISN’T RECOGNIZED IF I RE-BOOT. ASSUMING MY CAT HAS KNOCKED IT 1 TOO MANY TIMES.

I KEEP TRYING 2 FIND A SAFE PLACE: IT USED 2 BE PLUGGED IN FRONT, BUT TIGER WAS ENTICED BY THE WIRES, & EVENTUALLY UNPLUGGED & KNOCKED IT DOWN & BROKE IT (I ACTUALLY WATCHED HOPELESSLY, AS I’D RUNG & WAS TRYING 2 MAKE HIM STOP, & WAITED 4 MY BELL 2 BE ANSWERED).

SO, I GOT A NEW 1 (MOM DECIDED SHE DIDN’T WANT HERS, WHEN I WAS C-ING IF MY OLD EXTERNAL HARD DRIVE THAT SHE GOT ME, WOULD WORK IF I JUST HAD NEW, UNCHEWED WIRES). I PLUGGED IT IN BACK, BUT TIGER JUMPS ON MY TABLE, THEN JUMPS 2 MY PRINTER STAND, SO HE CAN CHECK OUT A WIRE HEAVEN BEHIND MY MONITER.

AT 1ST, WHEN HE DID IT, HE JUST UNPLUGGED MY EXTERNAL HARD DRIVE AS HE CROSSED. IT DROVE ME NUTS, SO I HAD MOM GET A THIN, BREATHABLE FABRIC 2 COVER THE WIRES. IT HID THE WIRES & WORKED AWESOME, BUT MY COMP. OVERHEATED, & I COULDN’T GET ONLINE 4 ALMOST A MONTH…STILL TRYING 2 RE-COOP FROM THAT, & HAVE A BACK-LOG OF ALMOST 200 EMAILS.

A WHILE AGO, WE STARTED HAVING INTERNET PROBLEMS–MY PRINTER STAND WAS RUINING THE PLUG, SO WE HAD 2 ANGLE MY PRINTER STAND.

AS SOON AS WE DID , HE’D KNOCK MY EXTERNAL HARD DRIVE 2 THE FLOOR, AS HE BOUNDED FROM MY TABLE 2 MY MONITER. I’VE HAD SEVERAL SCARES & OFTEN LOCK MYSELF IN MY ROOM ALONE (SO HE’S LOCKED OUT). I WAS ON 2 HIM, THOUGH (IE. I NEVER ORDERED SCRAP. STUFF UNLESS IT WAS BURNED ON A CD, SO THERE WAS A HARD COPY), & TRIED 2 COPY FOLDERS (AS I SAID), BUT MANY WOULD COPY ¾ OF THE WAY, THEN STOP, SAYING IT COULDN’T COPY SOMETHING, OR I’D LATER FIND AN UNUSABLE FILE (LIKE IT’D ACT LIKE IT COPIED ALL MY PICS, BUT LATER I’D FIND A PIC. ONLY ½ COPIED, RENDERING THE FILE USELESS). I WASN’T SURE WHAT 2 DO, SO RATHER THAN FIGURE IT OUT, I SPENT TIME PREPARING 2 SWITCH COMP. SO, SOME STUFF IS VERY RECENT, & SOME IS NOT…

ODDLY, I’M NOT FREAKING OUT 2 MUCH. PRAYING 4 DATA RECOVERY, ASAP, BUT MAYBE IT’S THE RELIEF OF AN EXCUSE FROM MY NOW 2 BUSY LIFE. OR MAYBE IT’S BECAUSE NONE OF THIS WAS EVEN REMOTELY SOMETHING I WORRIED ABOUT 5 YRS. AGO, SO WHY WORRY NOW? MAYBE BECAUSE WHILE IT’S ALMOST MY WHOLE TEMPORAL LIFE, MY SPIRITUAL LIFE (MY FAMILY) IS FINE–& ISN’T THAT WHAT MATTERS? OR MAYBE IT’S THE MISPLACED PEACE THAT THAT I FEEL THE INFO CAN BE RECOVERED…JUST UNSURE WHEN IT’LL BE RECOVERED…

THERAPY

I’M NOT “INTO” TRADITIONAL THERAPIES LIKE SPEECH, OCUPATIONAL, & PHYSICAL THERAPY. IN FACT, MOST OF THE TIME (BESIDES WHEN I GOT MY ARM SUPPORT & POWER W/C), I TOTALLY HATE OCUPATIONAL THERAPY (SINCE I CAN’T TALK & PROB. APPEAR MENTALLY HANDICAPPED, I’M TALKED DOWN 2, & TREATED LIKE I’M MENTALLY HANDICAPPED). I JUST HAVEN’T HAD GOOD EXPERIENCES W/THEM.

BUT, I DO HAVE “FORMAL” THERAPY, BUT THEY R THERAPIES THAT R LESS COMMON, IT SEEMS. I CURRENTLY TAKE MUSIC THERAPY , & SOMETIMES DO SWIM THERAPY AT HOME (WE WERE CONSITANTLY DOING IT IN R SWIMSPA AT HOME, BUT LATELY, WE’VE HAD “SWIMSPA TROUBLE,” SO THERAPY HAS BEEN SPORADIC).

AFTER MY 1ST 3 HOSPITAL MONTHS, I RETURNED HOME & HAD RIGOURESS THERAPY AT HOME–IN FACT, I GOT SICK OF HOW MUCH THERAPY WE DID–BUT I’M POSITIVE IT PD. OFF! MY HUSBAND WAS ABLE 2 FIND LOADS OF EQUIPMENT THAT LET ME CONTINUE THERAPY AT HOME, UNTIL WE BUILT AN ACCESSIBLE HOUSE (WE HAVE A TILT TABLE 4 DAILY STANDING, A RECLINING BIKE–SOMEHOW I BALANCE, & HE MOVES MY LEGS , AN AB ROLLER, A 2-PERSON BALL, A MAT, E-STIMULATION MACHINE, & A SPIROMETER 4 BREATHING). UNTIL THE ACCESSIBLE HOUSE, WE USED A FRIEND’S OUTDOOR POOL 2 INITIALLY DO SWIM THERAPY DURING THE SUMMER MONTHS IN INDIANA. THE NEW ACCESSIBLE HOUSE HAS A SWIM-SPA 4 SWIM THERAPY, & A MUSIC ROOM, THAT HAS HELPED W/MUSIC THERAPY THAT I NOW DO.

HOWEVER, AS LIFE SLOWLY SIFTS TOWARDS OUR NEW “NORMAL,” I UNFORTUNATELY DO MORE 4 MY LIFE AS A MOM, & LESS 4 MYSELF AS A STROKE SURVIVOR. THIS IS SO VERY EASY 2 DO, BY LETTING MYSELF FEEL GUILTY, IF I “POUNCE” ON MK THE 2ND HE’S FINALLY HOME, AFTER A LONG DAY. (THOUGH, ODD 2 ALLOW THAT THINKING PROCESS, SINCE I DON’T SEEM 2 WORRY AS MUCH, IF IT’S ANOTHER NEED, LIKE POTTY, & THERAPY IS A NEED 4 ME!)

ANYWAY, I MUCH PREFER 2 CREATE MY OWN THERAPIES… 4 EX., USUALLY I LIE 4 HRS. IN BED, SO I DO EYE EXERCISES, ARM EXERCISES, SLOWED DOWN BREATHING, ETC.… WITH ALL THE RECENT TRIPS, I WAS “OUT OF THERAPY” TOO LONG 4 MY DOUBLE VISION. MY DOUBLE VISION GOT A LOT WORSE, WITHOUT “COMP. THERAPY” & FOCUSING 2 READ.

OTHER WAYS I DO THERAPY:
SPEECH—REPEATING THINGS I HEAR, SINGING WHEN ALONE, TRYING 2 SMILE IN MY ELEVATOR MIRROR, STICKING MY TONGUE OUT AT KIDS, EATING (MOVES MY TONGUE, SO IT’S STRONGER, & CAN FORM MORE ALPHABET LETTERS), ETC.
OCUPATIONAL—SORTING THINGS LIKE BRADS & PAPER CLIPS FROM A MESSED UP DRAWER, GETTING LINT/HAIR OFF MY CLOTHES, COLOR/WRITE W/MY KIDS, SIGN HOMEWORK, ETC.
PHYSICAL—LIFTING HEAVY ITEMS–WHETHER TOYS (I HELP FIA CLEAN, WHENVER I CAN) OR BOOKS (IN PLACE OF WEIGHTS), REACHING BEYOND MY REACH 4 A REMOTE OR 2 FEED MYSELF W/O MY ARM SUPPORT, LEG LIFTS IN MY SHOWER, ETC.

I COULD EASILY GO ON, BUT THINK U GET THE IDEA: I LIKE 2 CHALLENGE MYSELF 2 DO EVERYDAY, PRACTICAL STUFF 4 MY THERAPY.

DESCRIBING MY 2 “FORMAL” THERAPIES:

SWIM THERAPY–I MOVE VERY LITTLE– MOSTLY HEAD & RT. ARM– BUT IF I’M HELD RT. IN A POOL, I CAN WALK!

1. WE HAVE A SWIM SPA IN R HOUSE (I’M THE COOLEST MOM W/A SWIM SPA & ELEVATOR IN MY HOUSE!) I HAVE A LIFT 2 GET ME IN. . THIS 1 IS NICE & JUST 1 OF THE MANY LIFTS OUT THERE: http://www.surehands.com/

OTHER GEAR:
2. NECK FLOTATION COLLAR–MINE IS LIKE THE 1 FOUND HERE: http://www.aqua-gear.net/index.php?main_page=product_info&products_id=221
3. LIFE VEST (OPTIONAL—I STARTED W/1, BUT NOW RELY ON THE NECK COLLAR)
4. 5 LB. WEIGHTS–I USE 5 LBS. ON MY LEGS, OR THEY FLOAT…MAKES IT EVEN MORE REMARKABLE THAT I CAN WALK!
5. A FLOATIE TUBE/SNAKE–LIKE FROM A TOY STORE–USE IT UNDER YOUR BUTT, SO U CAN FLOAT!

IF U CAN FIND AN ADAPTIVE SWIM THERAPY PLACE, IT HELPS 2 TAKE A CLASS, 2 LEARN THE EXERCISES, BUT YRS. B4 I HAD A SWIM SPA IN MY HOUSE, I JUST DID “WHATEVER”, W/NO TRAINING, AT FRIENDS & FAM. POOLS.

WHEN WE TRAVEL, OFTEN RENTING AN ADAPTIVE HOUSE W/A POOL, IS BETTER THAN SEVERAL NIGHTS IN A HOTEL ROOM–U JUST MAY NEED A LIFT (MY HUSBAND CAN CARRY ME!)

MUSIC THERAPY–SPEECH COULD DO NOTHING W/ME. I HAD 2 SHALLOW OF BREATHING 2 SPEAK.

THANKS 2 PBA, I CAN STILL CRY OR GET CHOKED UP 2 MANY SONGS, BUT I STILL TAKE MUSIC THERAPY. MUSIC THERAPY HAS HELPED MY BREATHING LOTS! I WAS TOLD I’D NEVER SPEAK AGAIN, BUT VOWED 2 NOT HAVE A COMP. VOICE! THE LAST THING I REMEMBER B4 BEING KNOCKED OUT & LOSING MY VOICE BACK IN 2004, WAS A FRIEND DOC. SAYING I’D SING AGAIN SOON. I NEVER 4GOT THAT, & IT HELPED LIGHT MY “OH YEAH?” FIRE.

I WAS VERY VOCAL B4, SO 2 MONTHS LATER, WHEN A DOC. SAID HE WAS WASTING HIS TIME 2 LOOK AT ME 4 TRACHE REMOVAL, BECAUSE I COULDN’T TALK, I WAS REALLY UPSET–I WAS 2 UPSET 2 DO THERAPY THAT DAY–& VOWED 2 PROVE HIM WRONG.

NOW I SAY (SLURRED, & OFTEN W/O CONSONANTS) HEY, BYE, YES, NO, LIAR (VERY IMPORTANT! LOL), ETC. I CAN SAY & SING MANY THINGS. MY BEST IS “I LOVE U” (I O U”) & I’VE SAID MUCH MORE (USUALLY IT JUST “POPS” OUT, W/O TRYING, & I CAN RARELY DUPLICATE IT). USUALLY I SAY 1–2 WORD PHRASES (IT THRILLS ME WHEN I CAN VOCALIZE A “YES/NO” RESPONSE 2 A QUES.).

RT. NOW, JUST AS A MOM WOULD REALLY UNDERSTAND HER TODDLER, WHILE OTHERS MIGHT NOT UNDERSTAND A WORD OR 2, MY HUSBABD GETS ME…

IN MUSIC THERAPY, I WORK A LOT ON MY BREATHING & SINGING, BUT MY 7 YR. OLD, FIA, OFTEN IS MY BEST SPEECH THERAPIST, W/O KNOWING IT. SHE OFTEN EXPECTS ME 2 REPEAT THINGS SHE SAYS, SINGS W/ME (A FAV. 2 SING IS “OLD MCDONALD”–I SING “EIEIO” & “MOO”), & STRETCHES MY VOCAL CHORDS, BY ALWAYS MAKING ME LAUGH.

OTHER WAYS THAT I’VE BENIFITTED FROM MUSIC THERAPY SO MUCH–
• PLAYING GUITAR (AS STRENGTH & OTHER GROSS MOTOR SKILLS HAVE INCREASED, I CAN LIFT HEAVIER STUFF, REACH HIGHER & FARTHER, ETC.)
• PLAYING AUTOHARP (SIMILAR 2 GUITARM BUT PROVIDES A HORIZONTAL, VS. VERTICAL, ARM MOVT., & HELPS STRENGTH SO I CAN DO THINGS LIKE OPEN DOORS)
• PLAYING PIANO (AS I INCREASE MY TEMPO IN PLAYING PIANO, I TYPE FASTER!)
• PLAYING RECORDER (HELPS ENLARGE BREATHING, & I GET AN AUTO. RESPONSE 2 HOW I’M DOING)
• PLAYING RHYTHM INSTRUMENTS, ON THE BEAT OF A SONG (I LEARN 2 REACT QUICKER)
• MOVING MY LEGS 2 A FASTER TEMPO SONG (HELPS STRENGTHEN & PREPARE ME 2 WALK)
• BREATHING EXERCISES 2 A SLOWER TEMPO SONG (NOT ONLY HAS IT HELPED 2 SLOW DOWN & ENLARGE MY BREATHING SO I CAN TALK, BUT HAS ALSO PROVIDED SOME BREATHING TRICKS 2 HELP MANAGE MY PBA!)
• “SINGING” (I VOCALIZE, LEARN VOWELS & CONSONANTS 2 FORM WORDS, MATCH PITCHES 4 INFLECTION, ETC.)

NONE OF THIS SURPRISES ME. I WAS A MUSIC MINOR, & FOCUSED ON THE BRAIN’S IMPACT WHEN MUSIC IS INVOLVED (HENCE, “MR. HOLLAND’S OPUS” IS MY FAV. MOVIE). I KNOW A “MUSICAL” BRAIN CAN BE WIRED DIFF., SO IT MAKES SENSE THAT THIS KIND OF THERAPY SEEMS 2 HELP ME THE BEST.
ALSO KNOWING THIS, I FOUGHT 4 MUSIC 2 BE IN R SCHOOLS & TAUGHT MUSIC 2 ELEMENTARY AGE KIDS AT CHURCH, & AT A SCHOOL IN UTAH B4 MY STROKE.

WE HAVE DEVELOPED WAYS 4 ME 2 INDEPENDENTLY PRACTICE M.T. (A HUGE FEAT 4 ME), & IT’S THE ONLY THERAPY THAT I’M CONSISTENT WITH.

HEADBAND

GUESS WHAT I DID 2DAY? I SWITCHED HEADBANDS! I CAN’T STYLE MY HAIR, BUT I HAD A HEADBAND ON, & WANTED A DIFF. HEADBAND (THAT JUST HAPPENED 2 BE W/IN REACH), SO I SWITCHED HEADBANDS! I WAS ABLE 2 SLIDE THE HEADBAND I WANTED ON IN FRONT, USING MY FOREHEAD 2 ENLARGE THE BAND (LUCKILY, IT WAS SOFT PLASTIC HEADBAND), &RETAIN THE STYLE FROM THE OLD HEADBAND, THEN SLIDE OFF THE OLD HEADBAND IN BACK!