Recovery

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…”

QUESTIONS ANSWERED

I WAS ASKED IF I STILL DO SPEECH, SO, CONSIDERING THAT IT’S BEEN AWHILE SINCE I’VE POSTED, I THOUGHT I’D POST MY RESPONSE: I STILL DO SPEECH THERAPY ONCE A WEEK, AS WELL AS “SINGING” IN MUSIC THERAPY. MY MUSIC & SPEECH THERAPISTS COME HERE, PLUS I HAVE 3 SPEAKING COMPUTER PROGRAMS BUNGALOW SOFTWARE — SIGHTS & SOUNDS 1 & 2, & SPEECH SOUNDS ON CUE-THXS 2 ANOTHER STROKE SURVIVOR!) HERE’S ANOTHER COOL SPEECH SIGHT: , & I “SING” THE ALPHABET SONG & OTHER SLOW CHILDHOOD FAVORITES ON YOUTUBE & IN MUSIC THERAPY (I STARTED BY JUST SAYING “MOO” IN “OLD MACDONALD”!).

IN ADDITION, IN MY LAST POST, I RECEIVED A COMMENT W/THIS QQUESTION: Is the reason you are unable to speak, neurological and also your breath support?

YES, BOTH. I’M MISSING A “CONNECTION”, SO IT’S TRICKY 2 TELL MY TONGUE & MOUTH WHAT 2 DO (PLUS, MY LEFT SIDE IS “PARALYZED”–I FEEL, BUT CAN’T MOVE IT–WELL, I CAN A BIT NOW W/MY MOUTH & LEG, BUT THE MUSCLES R SUPER WEAK!), AS WELL AS COORDINATE THE SOUND W/MY BREATHING. & UNTIL RECENTLY, MY BREATHING WAS INVOLUNTARY. I BARELY GOT ENOUGH CONTROL, SO I HAVE BEEN BUILDING MY BREATH SUPPORT, & AS I DID, MY SPEECH BECAME CLEARER. IT WAS EXCITING!

HOWEVER, THE PROGRAM I WAS DOING RECENTLY ENDED, & I’VE BEEN TRYING 2 MAINTAIN WHAT I GAINED, BUT IT’S A GUESSING GAME HOW 2 MAINTAIN, SO I’VE RECENTLY BEEN STRUGGLING. I NEED A BETTER WAY! (OR THE WAY MAY BE FINE, BUT I NEED 2 DO IT MORE FREQUENTLY.)

I WAS COMPLACENT WHEN THE POSSIBILITY WASN’T THERE, BUT NOW IT’S DOWN RIGHT FRUSTRATING 2 KNOW THE POSSIBILITIES, & NOT DO IT! LATELY, I STRUGGLE 2 SPEAK WHEN I WANT 2, & WHEN I DO, IT ISN’T AS CLEAR AT ALL!

LUCKILY, SOPH IS AMAZING AT UNDERSTANDING ME. WED. NIGHT, I ASKED HER, “WHAT ARE YOU EATING?” THE WORD “EATING” WAS HORRIBLE, BUT SHE MANAGED 2 MAKE IT OUT, & OFFER ME SOME. WE CONTINUED A MINI CONVERSATION, WHERE SHE HAD FUN ASKING QUESTIONS, & FIGURING OUT MY 1 WORD ANSWERS. NO EASY FEAT, W/HOW UNCLEAR I CAN BE LATELY! LOL

ON TO ANOTHER TOPIC…

I ALSO WAS ASKED ABOUT MY EATING:
I’M BITING & CHEWING A LITTLE NOW, & FEED MYSELF A LOT–I PREFER MY HANDS, BUT CAN MANAGE UTENSILS. (WE HAVE WORKED ON MY GRIP IN MUSIC THERAPY, WHICH HELPS WRITING, EATING, & GRABBING STUFF.)
& I USUALLY FINISH THE DRINK.

ODDLY, I’M QUITE PATIENT W/ASL, SINCE I APPRECIATE THE CARE 2 HEAR ME OUT, & EFFORT PUT FORTH 2 COMMUNICATE W/ME, BUT I’M NOT PATIENT WHEN I EAT…I GO NUTS STARING AT MY FOOD. SO, I’VE LEARNED HOW 2 LEAN FWD, GRAB MY CUP OR PLATE, & FEED MYSELF! I KNOW I MAKE A MESS, & IT TAKES LONGER 4 ME 2 FEED MYSELF IN THE LONG RUN, BUT IT’S DIFFERENT. MORE BEARABLE SOMEHOW! I CAN DO, OR WILL AT LEAST TRY, ALMOST ALL FOODS, EXCEPT SOUP & CEREAL, & I’M NOT GREAT W/SALAD…BUT IT NEEDS 2 BE ON A PAPER/PLASTIC PLATE ON MY LAP (SO, I CAN’T DO IT IN CERTAIN PLACES, & IT DEPENDS WHAT I’M WEARING.) BUT SOMETIMES IT’S STILL NICE 2 BE FED-DEPENDS ON MY MOOD (LIKE IF I’M TIRED–IT’S HARD WORK!), & IF THE POTENTIAL IS THERE 4 A HUGE MESS. IT’S JUST SOMETIMES A NICE BREAK! BUT IF I CAN’T FEED MYSELF, MK FINDS SOMETHING (USUALLY BREAD OR A ROLL). THAT MAKES IT WAY MORE BEARABLE 2 NOT FEED MYSELF!

I TAKE PRIDE ON THE DAYS THAT I MANAGE 2 FEED MYSELF EVERY MEAL! LOL IN FACT, I AM ENJOYING IT 2 MUCH, & WENT THROUGH A SPURT WHERE I SEEMED 2 BE ENJOYING THINGS THAT I’VE MISSED 4 FAR 2 LONG! THEN, I WENT ON A DIET, & LOST LIKE 40 LBS.! LOL (IT WAS PORTION CONTROL, SO I NEVER COMPLETELY GAVE UP EVERYTHING, THOUGH I DID WATCH WHAT I GRABBED, & DRIED FRUIT BECAME A BEST FRIEND, 2 REPLACE MOST CHOCOLATE)

SPEECH

THIS THURSDAY , I FINISH THESPEECH PROGRAM I AM DOING. MY BREATH SUPPORT IS BETTER, & I SPEAK CLEARER. IN FACT, MID-WEEK, WHILE PRACTICING, I HAVE SOME VERY VOCAL DAYS, & CAN EVEN CARRY ON CONVERSATIONS WITH SINGLE WORD OR 3-5 WORD PHRASE HERE & THERE. I HAVE EVEN TOLD MY DAUGHTER, “WHAT?” ON THE PHONE, & SHE UNDERSTOOD (PROBABLY BECAUZ SHE KNOWS WHAT THAT WORD SOUNDS LIKE)!

IT’S COOL, BUT 4 SOME REASON, IT IS WAY HARDER IF I TRY 2 SAY THINGS (INSTEAD OF IT NATURALY “POPPING” OUT), OR LEAVE MY HOME–IT’S LIKE I HAVE A MENTAL BLOCK, OR WALL, & I CAN’T STOP HOLDING MY AIR. PLUS, OUT & ABOUT, IT’S SORTA HABIT AFTER 7 YEARS, 2 JUST NOD, INSTEAD OF SAY HI, BYE, YEA, NO (WHICH I CAN DO ALL, JUST SOMETIMES THE VOCAL RESPONSE IS DELAYED). SO MY NEW THING IS 2 NOD, THEN SAY IT, EVEN IF THE PERSON HAS LEFT, OR THE CONVERSATION IS OVER. LOL THE TRICK IS 2 DO IT (SOMETIMES I EITHER 4GET, CAN’T DO IT, OR AM 2 TIRED 2 DO IT!) BUT IT IT’S A BONUS IF I SAY IT RIGHT AWAY! LOL

MY HUSBAND ‘S PARENTS HAVE BEEN VISITING US HERE. IT’S BEEN GOOD HAVING THEM HERE, BECAUZ I GET MORE OPPORTUNITIES 2 TALK, & AM ENCOURAGED 2 TALK.

I HAVE 2 SHARE MY FAVORITE THING: IF I AM FINGER SPELLING, & THEY ARE CAUGHT ON A LETTER, I LIKE 2 SAY THE LETTER, IF I CAN! I CAN’T SAY THEM ALL, BUT IT’S FUN 2 SURPRISE PEOPLE W/THE FEW I CAN SAY! LOL

ALSO, I CAN SOMETIMES NOW SAY “S” IF I TILT WAY BACK, ALMOST FLAT, IN MY CHAIR, THOUGH, IF I CAN, IT MAY TAKE QUITE A WHILE 4 IT 2 OCCUR. “SOPHIA” IS THE EASIEST S-WORD 4 ME 2 SAY LAYING DOWN, BUT I HAVEN’T MASTERED IT YET IN MY CHAIR.

LETTER “S”

OH HAPPY DAY! I CRIED TEARS OF JOY! I CAN’T DO IT SITTING OR TILTED IN MY CHAIR, BUT LAYING IN BED, I CAN SAY THE LETTER “S”, & “SOPHIA” (NOT “OPHIA”)! I THINK IT WORKS BECAUSE GRAVITY HELPS ME. I HAVEN’T MASTERED MY OTHER DAUGHTERS NAME, “JESSICA”–NOT ONLY CAN I NOT SAY LETTER “J”, BUT “S” KILLS ME IN THE CENTER OF A WORD! I’VE TRIED OTHER “S” WORDS, BUT 4 NOW, I CAN ONLY SAY “SOPHIA” & “SUN,” & ONLY IF I LAY DOWN!

WANTED 2 SHARE

BIG ACCOMPLISHMENT:

IN SPEECH THERAPY, I’M DOING A RATHER INTENSE PROGRAM 2 BUILD UP MY BREATH SUPPORT. I PRACTICE SPEECH EXERCISES 4 DAYS A WEEK, & TWICE A DAY FOR 4 WEEKS. IN THE EXERCISES, I SAY “AAAH”, DO VOCAL SLIDES, SAY SOME “FUNCTIONAL PHRASES”, SAY WORDS, & MAKE A GOAL (LIKE I DECIDE 2 SAY HI BACK 2 ANY1 WHO SAYS IT 2 ME).. I KEEP EVERYTHING ORGANIZED 4 PRACTICE IN A “SPEECH BINDER.”

HOWEVER, I SEEM 2 SUFFER FROM SOME “STAGE FRIGHT”, SO IT’S EXTRA HARD 2 SAY THINGS I KNOW I CAN SAY WHEN I’M OUT & ABOUT. BUT AT HOME, I HAVE “TALKING” DAYS. I STICK MOSTLY TO SINGLE WORDS (LIKE YES, NO, HI, BYE, OR MY FAVORITE: WHATEVER!). OCCASIONALLY I DO SHORT PHRASES (3-5 WORDS), BUT IT’S SO FUN 2 TRY LONGER, TOO! I’M NOT CLEAR, BUT IF MY FAMILY UNDERSTANDS, I’M TICKLED WHEN THEY DO UNDERSTAND & RESPOND. (I’M EASY 2 AMUSE! LOL)

MY PHILOSOPHY IS 2 SAY ANYTHING I’D SIGN (W/IN REASON!). I MAY LUCK OUT, BE UNDERSTOOD, & NOT NEED 2 SIGN! THOUGH MY FAVORITE IS WHEN I THROW OUT SOMETHING I THINK, BUT NEVER SIGN, AM UNDERSTOOD, & ANSWERED (LIKE IF I OVER HEAR SOMETHING, & DON’T UNDERSTAND, I MAY THINK , “WHAT?”, BUT IT’S 2 CONFUSING 2 ASK, & I DON’T REALLY NEED 2 KNOW, SO I LEAVE THE QUESTION IN MY HEAD. OR I DON’T BOTHER SHARING COMMENTS LIKE “YES U COULD” OR SHARING COMMENTS WHERE I’M JUST BEING SILLY –THE FUNNY MOMENT IS OVER B4 I FINISH SIGNING IT, SO WHY BOTHER SIGNING IT? BUT SOMETIMES NOW, I THROW IT OUT, & IF I’M HEARD & UNDERSTOOD, VERSUS BEING IGNORED, OR KEEPING IT IN MY HEAD, IT’S A BONUS, & EXCITING!).

ANYWAY, IN PRACTICE, MY LONGEST FUNCTIONAL PHRASE HAS 6 WORDS (“PUT LEFT FOOT ON FOOT REST”), & I USUALLY NEED 2 BREATHS 2 SAY IT. MY GOAL WAS TO USE 1 BREATH TO SAY IT, & TUESDAY MORNING I DID IT!

I ALSO HAD A GOOD LAUGH: A FUNCTIONAL PHRASE WAS ADDED 2 THE KEYRING I USE 4 SPEECH PRACTICE. IT READ: “JESS ROCKS”. (GUESS WHO ADDED THAT 2 MY LIST OF FUNCTIONAL PHRASES 2 SAY?) I LAUGHED SO HARD WHEN I FOUND IT–IT WAS LAMINATED & EVERYTHING, 2 LOOK LIKE THE OTHERS! U’D NEVER KNOW IT WAS ADDED, IF THE KEYRING WAS NEW 2 U!

THE BEST PART WAS HOW UNEXPECTED & QUIET IT WAS! & I BET IT’S BEEN THERE A WHILE, BECAUSE JESS HELPED ME PRACTICE THURS. NIGHT (& REQUESTED THAT PHRASE EXACTLY WHEN WE GOT 2 THE PLACE WHERE THE NEW “JESS ROCKS” CARD IS NOW), THEN I TOOK THE WEEKEND “OFF”, & I DID MY MONDAY PRACTICES W/O MY SPEECH BINDER , SO TUESDAY MORNING WASMY 1ST CHANCE 2 C IT, SINCE THURSDAY NIGHT, WHEN SHE HELPED ME! LOL