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.

I had a stroke. Do you know why I’m always laughing & crying?

IT’S A NEUROLOGICAL DISORDER. IT MAY IMPROVE WITH TIME OR WITH MEDICINE.

ALSO, CHECK OUT PBA (PSEUDOBULBAR AFFECT IS A CONDITION CHARACTERIZED BY EPISODES OF UNCONTROLLABLE LAUGHING AND/OR CRYING THAT MAY BE INAPPROPRIATE OR UNRELATED TO THE SITUATION AT HAND. THE CONDITION IS KNOWN BY MANY OTHER TERMS, INCLUDING INVOLUNTARY EMOTIONAL EXPRESSION DISORDER, EMOTIONAL LABILITY, EMOTIONAL INCONTINENCE, EMOTIONAL DISCONTROL, EXCESSIVE EMOTIONALISM, UNCONTROLLABLE LAUGHING AND/OR CRYING, AND PATHOLOGICAL LAUGHING AND/OR CRYING.)

How do you type?

THERE ARE SO MANY SWITCHING SYSTEMS AVAILABLE. EACH ONE DEPENDS ON WHAT AND WHERE THE PERSON HAS MOVEMENT (FINGER, HEAD, MOUTH, TOE). FOR THE BENEFITS OF OTHERS READING THIS POST, I WILL MENTION THE PRIMARY ONES THXS 2 TINA, IN MY STROKE YAHOO GROUP:
• JELLY BEAN SWITCH
• HEAD-STICK
• FOOT SWITCH
• JOYSTICK
• LASER POINTER, EITHER HELD IN HAND OR WORN ON GLASSES
• TRACKBALL
• SENSOR TRACKING, USES A TINY REUSABLE DOT WORN ON THE FOREHEAD OR ON GLASSES.
• TOUCHPAD
• SIP AND PUFF (WHICH MOST LIS/BSS CAN’T USE BECAUSE THEY CAN’T CONTROL EACH BREATH)
• ONE THAT MANY PEOPLE AREN’T AWARE OF IS THE LAR-PAM. IT WAS DESIGNED BY A BSS/LIS MAN NAMED LARRY. HIS WIFE PAM BUILT IT BASED ON HIS DIRECTION.

I TYPE W/1 FINGER & HAVE DOUBLE VISION, SO I, TOO, HAVE ADAPTED. LOL

IN ORDER 2 TYPE:
1. MY KEYBOARD IS “NORMAL”, JUST WIRELESS & SMALLER. MY KEYBOARD IS ON MY LEFT, SIDEWAYS (IT GIVES MY MOUSE MORE ROOM, & IS EASIER 2 SEE, 4 SOME REASON!) (PICTURED)

2. I HAVE A KEYGAURD (PICTURED)–IT HELPS SOOO MUCH! IT’S A NECCESSARY EVIL.

A KEYGAURD IS ESSENTIALLY A PIECE OF PLASTIC SO MY HAND CAN REST WHILE I TYPE & NOT PUSH KEYS. IT HAS HOLES DRILLED FOR THE THE KEYS LIKE THE (LETTERS, NUMBERS, SPACE, SHIFT, ETC.), BUT KEYS I DON’T USE (LIKE F1) STAY COVERED . MAKE SENSE?

SAW IT ON A TALKING MACHINE, & LOVED IT, BUT IT WAS $60. MY HUSBAND IS A WOODWORKER, SO HE SPENT A FEW BUCKS 2 BUY THICK PLASTIC, MARKED WHAT KEYS I WANTED 2 USE, & USED A DRILL PRESS, 2 CUSTOM MAKE 1 FOR MY COMP. IT’S VELCROED ON, SO OTHERS CAN USE MY KEYBOARD W/THE KEYGAURD OFF.

I DO OK W/O IT NOW, BUT I HAVE “WEAK” DAYS, & NIGHTS R HARD, SO I CHOOSE 2 ALWAYS USE IT. ALSO, W/DOUBLE VISION, I HAVE A TENDANCY 2 ACCIDENTALLY PUSH A WRONG KEY. THIS ELIMINATES THAT, BECAUSE ANY KEYS I DON’T WANT 2 PUSH, STAY COVERED W/PLASTIC.

3. DESKS ARE 2 LOW 4 MY CHAIR, SO I HAVE A COMPUTER DESK THAT MY HUSBAND MADE ME. (PICTURED) IT’S BASICALLY LIKE MY WHEELCHAIR TRAY, COVERED WITH A GLUED ON MOUSE PAD, & THINNER (SO IT FITS BETWEEN MY ARMRESTS), & SUSPENDED IN THE AIR…SO I CAN JUST ROLL IN, & PARK…NO WAITING 4 A TRAY 2 BE PUT ON ME!

4. I DROOL, SO I SARAN WRAP MY KEYBOARD.

5. I USE THE ACCESSIBITY OPTION CALLED “STICKY KEYS”—IT BASICALLY HOLDS DOWN SHIFT, CONTROL, OR ALT, WHILE I PUSH ANOTHER KEY OR CLICK MY MOUSE. IT’S A MUST!

6. SINCE I HAVE DOUBLE VISION, I USE A LARGE LCD SCREEN 4 MY MONITER, & PEOPLE ENLARGE THEIR FONT, IF THEY CAN, OR I USE “READ PLEASE”–A FREE PROGRAM INTRODUCED 2 ME BY ANOTHER STROKE SURVIVOR (THE LINK IS ON MY BLOG).

HAPPY STROKE-A-VERSARY

HAPPY “STROKE-A-VERSARY” 2 ME,
HAPPY “STROKE-A-VERSARY” 2 ME! LOL 🙂

EACH YEAR, IT GETS HARDER 2 REMEMBER MY AGE & THE ACTUAL DAY OF MY BIRTHDAY (THIS IS LIKE ADMITTING A BIG SIN, IF U KNOW THE IMPORTANCE OF HOLIDAYS 4 ME). AT TIMES, I THINK I’D 4GET AN OCCASIONAL BIRTHDAY, IF IT WASN’T 4 MY KIDS! LOL

MARCH 16TH IS MY “STROKE-A-VERSARY,” IF U WILL. IT IS THE DAY I WAS “RE-BORN,” &, LIKE MY BIRTHDAY, IT IS GETTING HARDER 2 REMEMBER, & I HAVE 2 “DO THE MATH.”

2DAY MARKS 7 YEARS SINCE MY STROKE, & I COULD LOOK AT THINGS 1 WAY, & FEEL DISAPPOINTED THAT IN 7 YEARS I’VE ONLY ACCOMPLISHED SO MUCH—LESS THAN A 7 YEAR OLD LEARNS IN 7 YEARS! THEN, MY “STROKE-A-VERSARY” COULD BE A SAD DAY, BUT I KNOW THAT I WASN’T SUPPOSED 2 LIVE, OR DO ANYTHING THAT I’M DOING, SO EVERYTHING I CAN DO, IS A BIG ACCOMPLISHMENT 4 ME!

SPEAKING OF ACCOMPLISHMENTS: USUALLY, IF I HAVE A NEED, I RING A WIRELESS DOORBELL 4 HELP (THE # OF RINGS SAYS WHO IT’S 4). LAST WEEK, I WAS BLOCKED IN A HALLWAY, & DECIDED 2 TRY 2 CALL 2 MK A FEW DOORS DOWN FROM ME, 4 HELP. IF HE DIDN’T HEAR, I COULD REVERT 2 RINGING…& IF HE HEARD, BUT COULDN’T UNDERSTAND, HE COULD COME THERE (I’M NOT THAT CLEAR, SO I TEND 2 SIMULTANEOUSLY SIGN THE WORD, OR BEGINNING LETTER, & HE WOULDN’T HAVE THAT ADVANTAGE). BUT HE HEARD & UNDERSTOOD JUST FINE, & A MINI CONVERSATION FOLLOWED (WHERE I SAID OK, YES, & NO), WITH HIM IN A ROOM NEARBY, & ME IN A HALL! SO FUN! I HAVEN’T DONE THAT IN YEARS!

TALKING HAS MADE ME SOOO HAPPY! WHEN I HAVE TROUBLE SPEAKING, MY “LEVEL OF HAPPINESS” CONSIDERABLY DROPS…CRAZY, BECAUZ I THOUGHT I WAS HAPPY AT THAT PREVIOUS “LEVEL!” THERE ARE PLENTY OF TIMES THAT I NEVER MENTION, WHEN I SPEAK, & I’M NOT UNDERSTOOD, WHICH IS FINE W/ME! THERE’S A SATISFACTION IN JUST SAYING IT, VERSUS IT STAYING IN MY HEAD! IT’S FAR WORSE 2 KEEP IT IN MY HEAD, VERSUS NOT BE UNDERSTOOD! AT LEAST IT’S “OUT THERE!”

W/SIGNING, 1 OF THE MOST FRUSTRATING THINGS IS 2 NOT FINISH WHAT I’M SAYING—WHETHER IT WAS ON PURPOSE (LIKE BEING TOLD, “I KNOW MOM—U CAN STOP SIGNING NOW”), OR ON ACCIDENT (COMMAS ARE ALWAYS PERCEIVED AS PERIODS, & THEY WALK AWAY MID-SENTENCE!). OBVIOUSLY, I’M NOT HEARD OR UNDERSTOOD IF THAT HAPPENS. U’D THINK THERE WAS THE SAME FRUSTRATION W/TALKING, & NOT BEING UNDERSTOOD…BUT THERE’S NOT! WEIRD, HUH?!?

SLEEP/TRY, TRY AGAIN

I TEND 2 JUST STAY WITH WHAT I HAVE BEEN USING AND LEAVE WELL ENOUGH ALONE. I LIVE BY THE OLD ADAGE, “IF IT AIN’T BROKE DON’T FIX IT.”

IN THE BEGINNING, I HAD THIS HORRIBLE “CRINKLY” HOSPITAL BED , WHERE I SLEPT ALONE (BECAUZ ALL THE BEDROOMS WERE UPSTAIRS). I HAD A NIGHT NURSE, & WAS TURNED EVERY 2 HOURS. IT WAS AWFUL, SINCE IT TAKES ME 4EVER TO FALL BACK ASLEEP, & I CAN’T SLEEP IF I SEE LIGHT—WHETHER FROM THE SUN OR A LIGHT BULB!

WHEN WE FINISHED AN ADDITION ON OUR HOME IN INDY, MY HUSBAND, MARK & I COULD SHARE A ROOM, & GOT A SELECT COMFORT BED. I LOVED THAT IT WAS LIKE MY HOSPITAL BED, RAISING IN BACK, ALLOWING ME 2 SIT IN BED, BUT IT WAS 100 TIMES MORE COMFORTABLE! I STARTED TO SLEEP LONGER, & EVERY 4 HOURS, I’D WAKE NEEDING TO TURN.

EVENTUALLY, I NO LONGER USED A NIGHT NURSE, & I’D JUST TAP MK WHEN I NEEDED 2 TURN, WHICH DWINDLED DOWN FROM A FEW TO JUST 1 TURN!

WE MOVED 2 AUSTIN, & HAD OUR BEDROOM ON THE MAIN FLOOR, SO I CONTINUED SLEEPING W/MK. 1 DAY, MK APPEARED W/A TEMPUR-PEDIC OVERLAY 2 TRY. I LOVED IT. I COULD SLEEP 2-7 DAYS ON MY BACK, NOT NEEDING 2 TURN, SO WE WENT SHOPPING…

WHEN WE GOT A SEALY MEMORY FOAM MATTRESS, I STARTED SLEEPING THROUGH THE NIGHT W/O NEEDING 2 BE TURNED, 4 ABOUT 2 WEEKS. BUT EVENTUALLY, I WOULD WAKE 1 NIGHT W/SORE HEELS, & NEED 2 TURN, OR BEND MY KNEES…BUT I CAN USUALLY ONLY BEND MY RIGHT KNEE, SO I WOULD WAKE MK, 2 TURN ME (OTHERWISE, I KEPTWAKING NIGHT AFTER NIGHT, GETTING SORE HEELS, UNLESS I SLEPT ON MY SIDE FOR 4 HRS).

RECENTLY, I HAD AN INCREDIBLE BREAKTHROUGH & EVERYTHING BEGAN 2 EXCEED MY GREATEST EXPECTATIONS: I HATED USING MY BODY PILLOW 2 OCCASIONALLY SUPPORT ME WHEN I TURNED…I KEPT THINKING, “IF IT AIN’T BROKE DON’T FIX IT.” BUT, I DECIDED 2 TRY SEVERAL THINGS ON MY BACK. WHILE LOOKING 4 HEEL PROTECTORS (& PRAYING 4 ANOTHER SOLUTION, SINCE I DON’T EVEN LIKE SOCKS ON MY FEET IN BED), I HAD AN IDEA…SO, I TRIED JUST PROPPING MY FEET UP W/A PILLOW UNDER MY CALVES…I HAVE NEVER SLEPT SO WELL, & I SLEPT AN HOUR LONGER! IT WAS AWESOME!

MY HEELS WERE OFF THE BED, & WHEN I WANTED 2, I BENT MY RIGHT KNEE (I NOW DO THAT IN MY SLEEP!) & MOVED THE PILLOW UP, SO MY KNEES WERE BENT, WITH MY FEET FLAT. I HATE TO THINK WHAT I WOULD HAVE MISSED OUT ON HAD I NOT KICKED MYSELF OUT OF MY COMFORT ZONE & TRIED 2 MASTER SOMETHING NEW.

IT’S USUALLY MK WHO IS VERY GOOD AT KICKING ME OUT OF MY COMFORT ZONE & TRYING 2 MASTER SOMETHING NEW. HE USED THIS APPROACH 2 LOWER THE AMOUNTS OF MY MEDICATIONS I STARTED WITH, & TO GET RID OF MY TRAVHE & G-TUBE, ETC. THESE DAYS, I ONLY GET BETTER BY TRYING NEW THINGS. IF I HAVE NO RESULT, I SOMETIMES WAIT, & THEN TRY AGAIN. THIS IS WHY I LOVE A QUOTE BY MARY ANNE RADMACHER: “Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, “I will try again tomorrow”.”

MY FRIEND, JACK RUSHTON, SAID IT BEST: “PRESIDENT MONSON QUOTED THE FOLLOWING LINE FROM THE OLD CIVIL WAR MOVIE “SHENANDOAH.” THE WORDS ARE SPOKEN BY JIMMY STEWART AS FOLLOWS, “IF WE DON’T TRY WE DON’T DO AND IF WE DON’T DO THEN WHY ARE WE HERE? TO ME THOSE ARE WORDS TO LIVE BY. I BELIEVE THERE ARE TIMES IN ALL OF OUR LIVES WHEN WE ARE TEMPTED TO GIVE UP OR GIVE IN BECAUSE THINGS THAT CONFRONT US ARE JUST TOO DIFFICULT TO DEAL WITH. OF COURSE IF WE QUIT TRYING WE QUIT DOING…”

I’m curious as to what program you were doing that helped you control your breathing?

LEE SILVERMAN VOICE TREATMENT (LSVT). NOW I USE BUNGALOW SOFTWARE’S SIGHTS ‘N SOUND 1 & 2 (C THE LINK), IN ORDER TO CONTINUE WHAT I WAS DOING. SEE, THE PROGRAM I WAS DOING (LSCV), CAN BE DIVIDED INTO 5 SECTIONS:

IN SECTION 1, I SAID “AAAH” 12 TIMES.
IN SECTION 2, I SAID “AAAH” 12 TIMES, IN AN ASCENDING SCALE.
IN SECTION 3, I SAID “AAAH” 12 TIMES, IN A DECENDING SCALE.
IN SECTION 4, I SAID 10 FUNCTIONAL PHRASES (THINGS I’D SAY, LIKE “BACK OF SHIRT DOWN”, & THAT LIST IS NOW TYPED UP AS A CUSTOM LIST IN SIGHTS N’ SOUNDS 2)
IN SECTION 5, I SAID 10 WORDS/SHORT PHRASES FROM A LIST (& THAT LIST IS NOW TYPED UP AS A CUSTOM LIST IN BOTH SIGHTS N’ SOUNDS 1 & 2, DEPENDING IF IT’S A WORD OR PHRASE)

MY THERAPIST STILL COMES, BUT SEEMS 2 REALLY LIKE THE SOFTWARE…WE TEND 2 USE IT AT THE END OF A SESSION. LAST TIME, WE USED “SENTENCE SHAPER 2”, & SHE NOTED THAT MY PHRASES ARE CLEARER WHHEN I STRESS THE SECOND WORD, SO I’VE BEEN FOCUSING ON STRESSING THE SECOND WORD WHEN I PRACTICE W/THE PROGRAM, “SENTENCE SHAPER 2″, .”

I ALSO GOT THE PROGRAM “SPEECH SOUNDS ON CUE”, 4 MY OWN CURIOUSITY & REFERENCE, SINCE IT EXPLAINS HOW 2 SAY LETTERS I CAN’T SAY (REALLY, SOME CONSONANTS).