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.

NEW NEWS

RIGHT NOW, I’M NOT DOING SPEECH THERAPY, BUT I DO A LOT OF VOCALIZING IN MUSIC THERAPY, & I STILL TRY 2 PRACTICE SPEECH DAILY–SOMETIMES W/THE VIDEO I MADE IN A THERAPY SESSION (IT’S ON MY COMP.), SOMETIMES W/THE COMPUTER PROGRAMS I HAVE, OFTEN JUST WHEN I CAN (LIKE I COUNT EXERCISES SOMETIMES), & OFTEN WHILE I WAIT 4 OTHER PEOPLE.

CERTAIN PEOPLE SEEM 2 “PULL IT OUT” OF ME–LIKE MY LITTLE 2 YEAR OLD NEPHEW VISITING FROM NYC–HE SHOWS ME STUFF, THEN WAITS 2 HEAR ME SAY SOMETHING LIKE, “OH WOW!” THEN HE GETS SOOO EXCITED!

I HAVE NEW WORDS “POPPING OUT” ALL THE TIME NOW! I CAN BE TOTALLY QUIET, THEN SUDDENLY SAY SOMETHING, AS SOME1 TALKS W/ME…BUT, UNFORTUNATELY, SOMETIMES I CAN’T SAY THEM AGAIN (LIKE A SECOND TIME) AS CLEARLY.

SUNDAY, I WAS SO EXCITED, BECAUSE I WAS DRIVING MY W/C IN THE CHURCH HALL, A TEEN GIRL ASKED A QUESTION (“WHAT CLASS ARE U GOING TO?”, I ANSWERED (“MIA-MAIDS”), & SHE UNDERSTOOD! I HAVE SAID “HI” AS I DROVE, BUT THIS WAS EXCITING BECAUSE SHE REALLY UNDERSTOOD (GRANTED, THE LETTER “M” IS ONE OF MY BEST CONSONANTS), & I DIDN’T HAVE TO STOP DRIVING, SO I COULD ANSWER HER!

ALSO ON SUN., I TOOK A STEP ON DRY LAND WITH MY RIGHT LEG—BUT MK HOLDS ME “JUST RIGHT” BECZ MY TORSO ISN’T VERY STRONG (I CAN IN A POOL, 4 SWIM THERAPY, BUT COULDN’T LIFT MY TOES, SO GRAVITY WON ON DRY LAND) MY LEFT LEG WANTED 2 WALK 2, BUT I COULDN’T MAKE MY KNEE BEND…

I ALSO GOT A NEW W/C THIS MONTH (I LOVE THE HEADLIGHTS, HORN, & TURN SIGNALS—GREAT, SINCE I CAN’T TALK! WELL YET) I NOW HAVE 5 W/C’S. SO, I NAMED MY 5 W/C’S (I’VE NEVER BEEN ONE 2 NAME INATIMATE OBJECTS, & DOUBT I’LL USE THE NAMES MUCH, BUT THE NAMES JUST “HAPPENED”):

1. FORD –THE NEW 1 (IT LOOKS LIKE A CAR)
2. BUCKING BRONCO –THE POWER TRAVEL CHAIR (WHICH CAN UNEXPECTEDLY JUMP 4WARD, WHEN U START)
3. LEMON-LIME –MY OLD, GREEN POWER CHAIR, THAT ALWAYS BROKE
4. BIG WHEEL –MY FOLDING MANUAL CHAIR, THAT I CAN MANUEVER (MY KIDS ARE IN IT, FOR THE “I WANNA BE LIKE U”) SCRAP. PG.)
5. DINA (SHORT 4 DINOSAUR) –MY 1ST, GREEN, MANUAL CHAIR

PRACTICE MAKES PERFECT

APPARENTLY, IN MY SLEEP LAST NIGHT, I WAS PRACTICING & MAKING PERFECT LETTER “S” SOUNDS.

WHEN I WOKE UP, I SAID “GOOD MORNING” 2 MY SON, & I SURPRISED MYSELF WITH HOW CLEAR I HEARD IT, & BY ACTUALLY QUIETLY SAYING THE LETTER “G.” (IT WAS SO QUIET, I MAY BE THE ONLY 1 WHO HEARD IT!) I ACTUALLY THOUGHT I HEARD WRONG, SO I’VE TRIED AGAIN, BUT CAN’T DO IT!

WHILE THERE IS NO PROOF THAT I MADE THE LETTER “G” SOUND, I REMAIN POSITIVE THAT IT WAS THERE! SO THE GOOD NEWS IS THAT I CAN DO IT!

ALSO, LAST NIGHT, I REACHED UP & CLOSED THE MIRROR ON MY CAR’S SUNVISOR, & PROCEEDED 2 PARTLY CLOSE IT…ALL THE WHILE, REPEATEDLY THINKING “ALMOST THERE MOM!” SOMEDAY…

Have you had good luck with talking to a Therapist? Does it really help?

I’M LUCKY, BECUZ OF MY RELIGIOUS BELIEFS (I’M LDS, A “MORMON.”) AS WELL AS A “DAILY THERAPIST” (MY HUSBAND, MK!). BOTH HELP ME TO KEEP THINGS IN PERSPECTIVE!

I’LL DISCUSS MY RELIGIOUS BELIEFS THAT HELP ME, BUT SINCE MY HUSBAND IS A THERAPIST, I’LL LET HIM ANSWER THE QUESTION:

AS FOR MY RELIGIOUS BELIEFS AS A “MORMON,” I BELIEVE THAT THIS LIFE IS TEMPORARY, & THAT 1 DAY, I WILL LIVE IN HEAVEN, FULLY RESTORED. THAT I WILL BE CAPABLE ONCE AGAIN OF WALKING AND TALKING. EVEN THOUGH RIGHT NOW I CAN BARELY MOVE, & AM JUST LEARNING 2 TALK.

ALSO, I REALLY FEEL THAT ALL I HAD WAS GOD’S IN THE 1ST PLACE, SO HE WAS ALLOWED 2 TAKE IT AWAY, & I’M GRATEFUL 4 WHATEVER HE GIVES BACK. HOWEVER, I KNOW THAT WHILE GOD MAY GIVE BACK CERTAIN ABILITIES, IT’S UP 2 ME 2 MAKE THAT ABILITY GROW…& IT TAKES LOTS OF PATIENCE, STRONG-WILL, A POSITIVE “I THINK I CAN” ATTITUDE, & DETERMINATION, IN ORDER 2 DEVELOP THESE ABILTIES GOD PUTS W/IN REACH!

CONCERNING THERAPY, HERE’S MK:

As a psychotherapist I will obviously say that therapy has its merits. Bedside manner is important for an MD, but finding a therapist with a personality and a skill set that meets what you need is very critical to making the experience work. For the most part, most of the huge work that people do has nothing to do with anything changing other than their perspective (which is huge). There is tons of reframing and radical acceptance that goes on that allows a person to not just accept their situation, but actually find enjoyment in life despite their situation. There is a lot of faith that people need to have in their therapist to trust what is being said will actually work. That is where the experience comes in handy. To actually say that you have seen things get better, and to clearly convey the process, is a huge sell to the client. your MD can give you a pill and it will do its business despite how hard you work. Therapy is totally dependent on the individual and how much effort they put into it.

There may be a variety of issues as well. Depression is most likely at the top of the list. Those who have families (and who does not?) need to keep in mind that the family is a system and when one part is not going well, the system feels it. Parents, siblings, spouses, children, and other extended family are often thrown for a loop. There are caregiver issues, marital issues, anger issues, related addictions due to poor coping skills, and a slew of childhood behavior problems/disorders. There may be a bunch of other issues, and typically several going on at the same time.

Aside from reframing exercises, there are a few other things that are done in a session. Family education is huge in situations like this. It still boggles my mind how often people come in with a diagnosis from years ago and still have no idea what it is all about. Another part of the education is helping people understand what is typical/normal for the situation. It is incredible how a person who you thought was rude could be offensive to you until you became aware that they were autistic and your outlook is brand new. Helping people understand where they are on the grief cycle is also helpful. You don’t have to experience a death to feel grief or loss. I also like to warn of possible outcomes. This is not to scare, but to prepare and give people understanding to identify and prevent bigger problems. Teaching skills to address anxiety and depression is a standard. Coping skills is an area where I feel people typically lack all the connections to put together the skills they already have with the other components that will help them face any adversity. I think most therapists do it wrong as well.

As a therapist, we were taught to tell people to do something to take care of themselves in order to address the stressors. After Jenny’s stroke, I felt like an idiot for all the times that I went through the motions before Jenny’s stroke. When I heard the same advice, but this time aimed at me, I vowed to do things differently. As a therapist, I am now more aggressive and teach this different than I did before.

Some people struggle in a therapy setting. there is a stigma that is attached that some can not get over. Others never grew up in a home where sharing thoughts and feelings was done, so it is a foreign experience at first.

Does therapy work? It works great. I see people’s lives change all the time.

What are “sticky keys”?

A FRIEND EXPLAINED THIS WELL:
Sticky Keys are a feature of Windows Operating Systems (Win96, Win98, WinXP, Vista and Win7 – don’t know about older versions) for single-finger typing. If, say, you want to copy something, the keyboard way is by pressing Ctrl-c…but if you are a single-finger typist you cannot hold down the ctrl key while you press “c”….enter Sticky Keys – press the “shift” key 5 times and you activate Sticky Keys. Once activated, for example, the Ctrl key will remain or “Stick” on until you press another key. Sticky Keys work for Shift, Ctrl, Alt and the Windows key. once finished, you can disable again by pressing “Shift” 5 times.

For a full list of keyboard shortcuts go to : http://support.microsoft.com/kb/126449 . Obviously, you cannot memorize them all (at least, I can’t !) but it’s good to learn a few.

ALMOST THERE MOM

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.