Recovery

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!

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.”