F.A.Q.

WHEN I HAD MY STROKE, MY FAMILY HAD 2 SCOUR THE INTERNET 2 LEARN ABOUT MY CONDITION, & I STILL GET QUESTIONS EITHER ABOUT MY DISABILITY, OR ABOUT BEING DISABLED.

HERE I WILL FOCUS ON ANSWERING THESE FREQUENTLY ASKED QUESTIONS, ABOUT ME, &/OR ABOUT MY CONDITION,ONE AT A TIME.

FEEL FREE 2 CONTACT ME (BY MY 2 EMAIL ADDRESS ON THE “CONTACT ME” PAGE) W/ANY & ALL QUESTIONS THAT U WANT 2 KNOW. IN TIME, I WILL DO MY BEST 2 ANSWER U, & I MAY EVEN COPY & PASTE IT 2 THE FAQ SECTION OF MY BLOG.

What is Locked In Syndrome?

“Locked In” is when a person is unable to move or speak, but their brain is 100% there, inside a body that can only communicate by blinking.    Maree Callis (https://www.youtube.com/watch?v=A3uEMyVnThI) explains it this way:

“I suffered a brainstem stroke which resulted in my being “locked in”. The best way for me to describe this type of stroke is to get you to picture a bridge over a river. On one side of the river you have “thinking” and on the other side you have “doing”. The bridge is the connector between the two. In my best Hollywood war jargon let me tell you – this stroke took the bridge out! This is a physical condition not a psychological condition. I am drug free, which leaves me with no brain cell loss. I have been blinking conversations for 17 years – this takes massive mental ability… I am 100% psychologically available.”

I struggle with 1 weak side on my body, & don’t know what to do.

I am not a doctor or therapist, but here’s a thought: have u tried e-stimulation?   (E-stimulation is recommended for soon after a stroke.)  However, if u can weakly move it, & u are just weak, but capable, so u may be interested in trying constraint therapy. It’d be super frustrating, but if you can somewhat move your weak side, it may be worth a shot! To do constraint therapy, u force yourself to use your “weak side”.  If it’s an arm that u want to start using, u might put your good arm in a sling & don’t use it — I think it takes at least 2 straight weeks–& it’ll build the muscles in the bad arm.

What therapies do you do?

EQUINE (HORSE) THERAPY —

I attend equine (horse) therapy once a week, which is kind of like physical therapy.  “Horse” therapy isn’t just limited to building core strength, building endurance, or helping a person to work on their balance, but it has also strengthened my upper body, replaced many of my anxieties with confidence, & helped me to strengthen my breathe support, so after 10 years, I am finally able speak again!

 

 

MUSIC THERAPY–

Once a week, I also have a music therapist come to my home.  Music therapy is like a combination of the “traditional” therapies (speech, occupational, & physical), & the focus varies. In music therapy, currently I work a lot on my breathing & singing/speaking.   Music therapy has helped my breathing lots, where “traditional” speech therapy could not.  (I was told that I’d never speak again, but between music therapy, & horse therapy, I am able to do several words, phrases, & sentences. While I am not the easiest to understand, just as a mom would really understand her toddler when no one else does, those who are familiar with me, understand me!)  It is said that “musically-minded” people have been proven to think different, & I minored in music, so I think that helps me respond so positively to Music Therapy.( Not that u have to be musical to do Music Therapy! )

Other ways that I’ve benefited from music therapy so much (BTW, none of this surprises me:  I was a music minor, & focused on the brain’s impact when music is involved.  I also know that a “musical” brain can be wired differently, so it makes sense that this kind of therapy seems to help me so much!)–

  • Playing guitar (increases strength & other gross motor skills…& as they  have increased, I can lift heavier stuff, reach higher & farther, etc.)
  • Playing autoharp (similar to guitar but provides a horizontal, vs. vertical, arm movement, & helps strength so I can do things like open doors)
  • Playing piano (as I increase my tempo in playing piano, I type faster, & since it strengthens all my finger muscles, I am able to use all my fingers in various ways, like typing!)
  • Playing recorder (helps enlarge & control breathing, & I get an automatic response to how I’m doing)
  • Playing a variety of rhythm instruments, on the beat of a song (I learn to react quicker, & different instruments strengthen different muscles)
  • Moving my legs to a faster tempo song (helps strengthen & prepare me to walk)
  • Breathing exercises to a slower tempo song (not only has it helped to slow down & enlarge my breathing so I can talk, but it has also provided some breathing tricks to help manage my PBA & anxiety!)
  • “Singing” (I vocalize, learn vowels & consonants to form words, match pitches for inflection, etc.)

 

 

Other than these 2 therapies with professional therapists, I do the rest of my therapy at home.   I much prefer to create my own therapies (for example, when I am in bed, I may do eye exercises, arm exercises, slowed down breathing, etc.), so I personally like to challenge myself to do everyday, practical stuff for my therapy.  Here’s what I do:

 

SPEECH–

  • “Move my tongue”—use a gauze pad to catch hold of tongue, pull it to the out position, and move  it to the left side of my mouth and then to right side of my mouth.  Do 10 repetitions, 5 times  (gauze pads are on a shelf in the exercise room)  I do 30-50 of these in sets of 10.
  • “Tug-Of-War” – for about 5 minutes I have someone try to pull a washcloth out of my mouth, to strengthen my jaw muscles, but I end up using ab muscles, & supporting my weight w/my right arm as well!  (I use a washcloth that is on a shelf in the exercise room)
  •  “Candle therapy”— builds my diaphragm muscle, as I practice repeatedly blowing out a candle  (candle & lighter on the shelf in the exercise room).  This can be done several ways:
  1. Blow out the candle 30 times, & record how long it takes me
  2. See how many times I can blow out the candle in a given time period (currently, I do 30 in 2-3 minutes)
  3. Have the candle distance change
  • 5 speech programs by bungalow on my computer (Sentence Shaper , & Sights And Sounds 1, Which Does Single Words, & 2, Which  Does Phrases).
  • 7 Speech Therapy DVDs by Communications Scripts, Inc.
  • Aromatherapy – to practice smelling, & learning to inhale on command as I smell the oils
  • Blow the recorder — hold it up to my mouth (in the therapy drawer, in the craft room)
  • I try to blow  Bubbles (some are in my wheelchair pocket, & in the therapy drawer basket, in the craft room)
  • Spirometer to practice breathing (in the therapy drawer, in the craft room)
  • Speech binder with phrases & lists of words I can practice saying.  It is from when I had “formal” speech therapy, though there’s an app, “Word Vault Pro”, that does almost the same thing! (the binder is in the therapy drawer, in the craft room)
  • Repeating things I hear
  • “Candy therapy” – I suck lollipops so I can pucker my mouth, or suck other candies to build tongue movement.
  • A whistle to build breathe support (one is in my wheelchair pocket)
  • Sing “La”, or with a TV show/movie/soundtrack—the more familiar it is, the better!
  • Conversations
  • Making faces in a mirror, like trying to smile
  • Sticking my tongue
  • Eating (moves my tongue, so it’s stronger, & can form more alphabet letters)
  • Clucking My Tongue
  • Licking My Lips
  • Massage My Face

 

PHYSICAL–

  • Feeding myself  (raising my arm repeatedly to strengthen it, as well as strengthening my tongue & facial muscles, which is helpful for speech)
  • Reading (small print on my iPad, my kid’s homework, the bible or any book, etc.) to strengthen my eye muscles, & increases mental abilities, like comprehension
  • Tilt table(a table that assists me in standing, which helps me strengthen myself, build my endurance, aid in my digestion, promote circulation, & more)  Sometimes I do knee bends on here, at the beginning of standing.  Knee bends usually take 5-10 minutes.  In order to do them, loosen the bottom strap, & when I am done, U tighten the bottom strap, so I can stand for additional 20-25minutes.  I can do this up to 3 times a day, for 30 minutes-1 hour.
  • Range Of Motion (ROM) Exercises to help me stretch.  I keep a green folder (that contains diagrams of these exercises) on the shelf, in the exercise room.  Do each exercise 10-20 times.  These shouldn’t hurt.  Do them slowly, especially when the neck is done (hold it there for 5 seconds).  This can take 20-40 minutes to do all the exercises, but it can be broken up, or only some of it may be done (like, just stretching the neck)
  • Stationary bike (MOTOmed Viva2)—this is made, so that I can stay it in my wheelchair (w/c) to use it, & the program I like alternates between it cycling for me, & slowing down, so I can try to cycle.  I can use a set program, which takes about 17 minutes to complete, or I can cycle as long as I want, if no program is used.   The bike more has helped with my endurance, strengthened me on both legs, & more.
  • Stationary bike arm exercises—Turn the arm handle around on the stationary bike, & I can “pedal” with my arms, & my left arm has begun to respond, bending, straightening, & sometimes even grasping! (http://www.motomed.com/en/models/motomed-viva2.html)
  • Panasonic Core Trainer (robotic horse)
  • Lift weights or Lifting heavy items, like books (in place of weights).  This is a great activity to do while watching TV/a movie, riding in a car, etc.
  • Leg lifts (raise legs while  sitting, & if I’m in my w/c, try to place my feet back on my footrests)
  • E-stimulation machine- can be done during a variety of actiivities, like reading, cleaning something, etc.
  • Ab roller—Unfold the chair in the exercise room, & help me get full range of motion, as I do sit-ups in it, by crunching up, & straightening out.  I do 10-20 of these.
  • Mat-I have a black mat in my room that is usually put in front of the TV, so I can sit & watch TV (the goal is to be “criss cross” & balance with my arms, which are by my side, but since I rarely stretch those muscles,  it can hurt).  Start with my legs bent less, & more straight in front of me, eventually making them criss cross, when I am more flexible.  I will sit for 10-30 minutes.
  • daily “sit-ups” – really, I just lift my head 20-50 times, while I’m laying down
  • “ab belt” (which is basically e-stim on my ab muscles, so I do nothing, but for a half hour it contracts my ab muscles, as if I do sit-ups for a half hour straight).    The ab belt has built up my breath support, allowing me to speak, & it has aided my digestion & it probably helps with the horse as well.
  • Peanut ball” (2 person) therapy ball, (for balance, usually, & to stand)

 

OCUPATIONAL–

  • a stress ball (to strengthen my fingers)
  • Toe lifts (this prepares me for walking, by strengthening the appropriate muscles)
  • I use a Boogieboard from Brookstone to practice my grip & writing
  • Organizing a drawer (sort things like paper clips, &/or brads)
  • Getting lint/hair off my clothes
  • Sorting money
  • Playing with things like sand/play-dough
  • Color w/my kids
  • Reaching beyond my “normal” reach/span, for items, like a remote on a bed, or taking things out of a box)
  • Sign things, like homework, gift tags, etc.

 

 

SWIM THERAPY—

We took a class to learn the exercises, but swim therapy can be done with no training.  We do exercises we learned in the class (&/or make up our own), & if I’m held right in a pool, I can walk!

 

Equipment:

  1. I use an outdoor pool, but it can be any poll, or swimspa
  2.  neck flotation collar–mine is like the one found here: http://www.aqua-gear.net/index.php?main_page=product_info&products_id=221
  3. Life vest (optional—I started with one, but now I just rely on the neck collar)
  4. 5 lb. ankle weights—I use them on my legs, or my legs will float
  5. A floatie tube/snake (like from a toy store)–use it under your butt, so u can float, or do sitting sit-ups, or work on your balance

 

Therapy Apps I have found useful:

  • Word Vault Pro (words, phrases, conversation starters…)
  • Speech Sounds (the app version of a computer program I have)
  • Talk Path (app version of a speech website)
  • Speech Tutor (shows how to say each alphabet letter)
  • CineVox/Decibel Meter (these help increase my volume)
  • Pianist Pro (virtual piano)
  • Beat (virtual metronome)
  • Breath2Relax/My Calm Beat (these increase my breath support)
  • VAST Songs 1 & 2 (karaoke to familiar children’s songs)
  • Sing Carols (karaoke to Christmas Songs)
  • Sing inTuna/PitchBot/Pitch Graph
  • Oral Motor (Oral Motor Exercises)

 

How do you stay close to the Lord despite your trials?

These are thoughts that help me stay close to the Lord:

Staying close to the Lord will not change our thoughts & feelings about a trial, & our trial may never go away…In fact, once u get a handle on things, your trial may even grow!  But by staying close to the Lord, you will be strengthened, & “bouyed” up, so u can press forward & endure to the end.

The atonement was not just for sin.  Through the atonement, Christ understands our every pain, whether physical or emotional.  I have no idea how in 1 night, Christ felt how I feel almost 12 years after my stroke, but He did!  So whenever I feel like no one can possibly understand how I feel, I think of that, & it strengthens me.

Always remember that u were prepared in the pre-existence for any trial that u must face, & if it gets too hard, tell Him!  Your problems won’t disappear, but u will be made stronger, & it will last only a little while!

If u ever feel like NOT praying, NOT reading your scriptures, NOT attending church, etc., then u probably need to!

When faced with a trial, it is easy to question the Lord & ask,”Why me?”  But instead, remember that it is through these trials that we learn to rely on the Lord & become who we want to be!   When u have a good workout, it isn’t pleasant, & your muscles get sore.  It is just as painful to stretch our “spiritual muscles,. but necessary to grow spiritually!  Staying close to the Lord gives us strength & direction on our journey.