Yes, I tried everything, & nothing really was great. One that I clearly recall: I had a buckey pillow (it is filled w/wheat, so it can be loud when it’s adjusted), as I recall, the bucky pillow looks like an airplane pillow.
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!
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:
- “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:
- Blow out the candle 30 times, & record how long it takes me
- See how many times I can blow out the candle in a given time period (currently, I do 30 in 2-3 minutes)
- 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!
- 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
- 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)
- 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.
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!
- I use an outdoor pool, but it can be any poll, or swimspa
- neck flotation collar–mine is like the one found here: http://www.aqua-gear.net/index.php?main_page=product_info&products_id=221
- Life vest (optional—I started with one, but now I just rely on the neck collar)
- 5 lb. ankle weights—I use them on my legs, or my legs will float
- 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)
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.
I haven’t posted in a while, cause so much has been going on: we just moved, went on a Disney Cruise, found & trained another person to help me, & hI ave been recovering from pain that was in my only working limb (I didn’t even know why it hurt…my guess is stress & tightened muscles didn’t mix with the lack of stretching & lack of therapy in the last few weeks, but it severely “crippled” me—I could barely type, sometimes I was unable to feed myself, etc.). But good news: I am doing MUCH better, & even made myself my own bag of popcorn! (Granted, I made a mess too, but it was the 1st time in almost 12 years that I made popcorn, & poured my own bowl!)
Since my article is being run again in LDS Living magazine again, I thought I’d share some “updates”, & share some things the original LDS Living article got wrong:
- My stroke occurred in my Indianapolis, Indiana home – we moved to Austin, Texas to build an accessible home, & be by family.
- I used to be the compassionate service leader, & a Young Womens (YW) teacher before that, but now I am the YW Personal Progress Leader (check out this remarkable youth program)–& recently earned my medallion again, along with both of my daughters (who were 13 & 15 at the time)!
- “I Love to See the Temple” is one of my favorite primary (children)songs, but not THE favorite! (It’s this.)
- I speak a LOT now. As u may be aware, I started horse therapy after this article 1st came out (which has been AMAZING & strengthened my core so much!), & my therapist jokes that when we 1st started, I could only say a few words, but “now (she) can’t get me to shut up!” If u get to know my Sophie, she’s so much like me, & she talks all the time, just as I used to do—so my therapist is correct in her explanation!
- Our 20th wedding anniversary was in 2014.
I’ve been busy this summer with several family affairs, & other things. It’s been quiet here now though, & I have time to type: All my kids have been in Utah (Soph was at ballroom dance camp, Jess was at EFY, & Zach is at summer school). However, they’ll all be back on Saturday–they fly back tonight, & they’re bringing a dog to join the family!
On Thursday, June 18, Zach left for summer term at college. (Yes, he’s coming home briefly before fall term begins!) When Mark flew with Zach to Utah (to set him up at BYU), I stayed home. Saying goodbye was like ripping off a band-aid, & besides the family being smaller, it seemed like we were fine. But we recently had our 1st family trip w/o him, & it just didn’t feel right w/o Zach, so we made him come out & briefly join us for a few days on our family reunion/50th wedding anniversary celebration in Hawaii!
The trip was a long flight, so I was worried, but the flight there was great: it had been broken up into 2 manageable flights, & for some reason, on the flight out, we had sleeping pods (those are usually for international flights.). It was a blessing that I could experience sleeping pods, cuz I found out I could lay completely flat, making an international flight a possibility! (Those pods are worth every penny to upgrade to 1st class!)
I was nervous about the 8-9 hour return flight not being broken up as well, & not having sleeping pods (Mark couldn’t find any), but we upgraded to 1st class, & since it was so late, I slept most of it, & since my chair was reclined for most of the flight, my butt was fine, & I never had to potty on the plane!
Anyway, these flights to Hawaii were the 1st flights in 11 years that I actually enjoyed. I’ve progressed enough that I can do minor shifts, & I can sorta’ help my ears when they hurt. Also, Mark’s been helping me learn to deal w/my anxiety, so I’m sure that helped me as well!
When Mark was in Utah w/o me (in June), I spoke to Mark on the phone! I’m not so good at it yet, so Sophie was there too, but I did it, & it was so awesome! Recently, my sister accidentally called me to wish me a Happy Birthday, & we actually carried on a short conversation! I was super tired when she called, so my speech wasn’t very clear, but we talked w/o anyone there, & w/o using my version of the morse code on the phone! Lately, I’ve had several good speaking days, & I have held several short conversations, & even introduced myself! It’s exciting!
I have also started to help clean up my house more: Starting in April, I began tidying up the kitchen, so this summer I have tried doing more this time. I have an OCD personality, so this was long over-due, & it feels good to be able to take pride in my home again!