THIS IS SILLY, BUT HAD 2 SHARe! TUESDAY I HELPED MK!

MK NEEDED 2 MAIL SOMETHING, PULLED UP 2 A MAILBOX & OPENED MY CAR WINDOW, I LEANED OVER & LIFTED MY ARM, & MAILED 2 NETFLIX ENVELOPS! GRANTED, IT PROBABLY HELPED THAT THE ENVELOPES WERE STIFF, BUT I DID IT!

I’M ALWAYS LEANING RIGHT 2 GRAB THE REMOTE OFF OF OUR BED (I OFTEN HAVE 2 PULL BLANKETS 2 GET IT CLOSER, BUT SOMETIMES I LEAN WAY OVER!)—I SWEAR ALL THAT LEANING HELPED ME DO THIS (I CAN’T LEAN LEFT, SINCE I NEVER DO IT).

MY ACCOMPLISHMENT MADE ME THINK OF SOMETHING: AT TIMES, MY KIDS MOCK ME SAYING “ALMOST THERE MOM,” BECAUZ IT CAN BE SUCH AN STRAIN & EFFORT 2 REACH THINGS—LIKE MY MOUTH WHEN I FEED MYSELF. NOW, AT TIMES WHEN I REACH 2 DO STUFF, I HEAR “ALMOST THERE MOM.” IT’S LIKE A HIDDEN INCENTIVE, & MAKES ME LAUGH.

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?!?

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 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)