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 horse therapy?

What is horse therapy?

Equine (“horse”) therapy is kind of like physical therapy, but i ride a horse instead of bounce & balance on a ball. sometimes i work on core strength/abs. sometimes the horse just stands there as i balance, & she stretches me, or we talk. once i had to twist & reach to do some upper body work.

This is from the newsletter for Red Arena (where I ride my horse, sven):

The movement of the horse can increase low tone for many reasons. The rhythmic movement of the horse can be stimulating to the proprioceptive system which helps the entire neuromuscular system engage. Combined with the momentum of the horse walking, in which the trunk muscles must activate to keep the core upright and adjust to the weight shift through the rider’s pelvis. You can actually see improvement in postural alignment during and after being on the horse. It’s just amazing how the horses movement can have such a broad impact, and there is no other piece of “equipment” that can replicate this and have the bonus of impacting the rider’s confidence, communication, self-esteem and mobility.

“If someone feels rather unfulfilled most of the time, doesn’t that mean they should be working on other things beyond what they’re doing right now?”

Not necessarily. I believe only God could answer that! often, it’s not until years later that u see how important it was!

Being a mom can feel very unfulfilling, but u’d be surprised at how important the job can be! i say this, becuz my degree was in elementary education, so we learned how vital the 1st 5 years, & especially the 1st 2 years, are. So I was devastated when i had my stroke, & my kids were 6, 4, & 2 years old. i cried becuz i felt sophie was being “jipped.” i had homeschooled zach for preschool, & made things like educational & church file folder games, i was teaching zach piano, was zach’s room mom (at school), & team mom (sports), gave elaborate birthday parties (i’d taken a cake decorating class, & when he had a superman party, instead of goodie bags, i made his 5 friends all superman shirts, with a cape)…should i go on, or switch to jess? i certainly couldn’t do the “stereo-typical” or extraordinary “mother stuff” for her,. thankfully, i’d been ok for the most vital 1st 2 years of her life, but she was only 2, so she still had 3 important years ahead of her!

however, since i couldn’t do all that other stuff, i spent a ton more time with her. i was great at watching puppet shows, & as i gained movt., i could participate when she pretended to feed me, etc., but for quite awhile, i was just there…seemed utterly pointless, honestly!

but years later, i am seeing the results. sophie & i are very close–in fact, i now feel zach was ‘jipped!”

same goes with my recovery–there are therapies & exercises i do that bring no immediate fullfillment, but years l8r, i see how it was beneficial to me! a recent ex.: I had several weeks off with horse therapy, due to the holidays. & then some re-training of the horses. I know the “peanut ball” is similar to riding the horse, so I intended to use that, but I ended up on it only once,so I was a bit worried about how I’d do at horse therapy, but it went great: I took the longest ride yet, & wasn’t too exhausted at the end to stand & transfer back to my w/c!

So I was thinking about how this occurred, when I only exercised on the peanut ball 1 time, & then i realized some stuff:

While I’m sure using my bike more has helped with my endurance, I realized some other stuff I did, that I attributed to helping in other ways, so I just gave no thought to it b4!:

I try to daily do “sit-ups”, or wear my “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). It has built up my breath support, allowing me to speak, & it has aided my digestion & now I realize it probably helps with the horse as well.

Also, I do this thing I call “tug-of-war”: there’s a washcloth in my mouth, & my helper tries 2 pull it out of my mouth. I can’t use my hands, so I end up using ab muscles, & supporting my weight w/my right arm, the same as I do while riding the horse!

Lastly, b4 the break, I’d noticed an increased ability to lean forward–I could lean forward b4, but I couldn’t stop part-way…it was all or nothing! But ever since riding the horse, Sven, I have built up my core enough to halt & hold it mid-way, & since I’ve not been able to do that for almost the last 10 years, it was kinda fun to do, & I’d do it when I was bored, watching a movie, etc.

& trials are the same way–i’ve had this one 10 years, so i’ve been fortunate to see some of the blessings, though i can promise u that when this trial began, i could not forsee the growth it’d bring to me, in preparing me for who i’d become! & i know i still have much more changing to do!

“What top 5 things would you tell a stroke survivor (or the person close to you who had a stroke) to do or try when got home?”

1. be grateful (dwell on what u CAN do, not what u CAN NOT do), be positive, & laugh when it’s hard. i keep a list of “blessings from my stroke.” if i hate something, i figure out how it’s a blessing in disguise. (ie. i’m unable 2 speak, so i use ASL. but it sure came in handy when i had to discipline my daughters on stage, during a church performance, so i put it on my list of blessings!)
2. get rest, sty hydrated, & eat well. u are weaker & can’t accomplish much if these aren’t taken care of, or if u are sick.
3. never say “i can’t.” just try 15 minutes later, or do it the next day—u may not feel well, need rest/food, or just need more time, in general.
4. when u try again, be creative! (ie. if u can’t lean over far enough to reach something, find something 2 hold, that will extend your arm & “grab”/stick 2 it 4 u.
5. find a stroke group (i do email support groups).

“Do you think teaching morse code to individuals and their families at an early stage of locked-in syndrome as a tool for communication would be successful?”

Seems a good idea (it seems that it would be a lot quicker and more effective than reciting the alphabet), but no. My brother tried on my 1st few weeks, but there were 3 big problems:
1. I had double vision. Even enlarging each letter to a page wasn’t good enough, & even if it was, my brain was too tired to learn anything!
2. I couldn’t control my blinking well enough. In fact, I was 1st told to blink once for yes, twice for no. But it got confusing if I had to naturally blink, due to dry eyes. So if I had to talk, I closed my eyes, & opened them when it was time to say yes…closing them said no.
3. I couldn’t do those quick blinks either–they were all long & slow.
4. I can’t close just 1 eye, even now!

What is a typical day for you?

“I have no job to go to or worry about, no house to keep up, no yard or van to maintain, no shopping for outfits to buy and take back, no toilets to clean, no food shopping or wonderful meals to prepare, no (quad) to endlessly care for and worry about, etc… it seems like my greatest stress in life is (choosing which audiobook or scriptures to listen to, which movie to watch on TV, responding to emails, scrapbooking the perfect page, or working on my current volunteer job at church). At those times, I feel sorry for everyone that isn’t a (quad)! You are all really missing out on something special!  Well, being a (quad) certainly does have a downside…”…(Jack Rushton—words in parenthesis added)  However, the biggest upside for me is to have been blessed by being married to a man like Mark! His typical day is insane! Now, his day would be fascinating to hear about, but I guess people are curious what I could possibly do:

 

I like to start each day w/”quiet time” (pray, think, ponder…).  A  dear friend explained “quiet time” like this:  “I wouldn’t wish my (condition) off onto any of you regardless of its many up sides, but what a blessing it has been to me in giving me the time to ponder, meditate, and pray. My spirit has been strengthened and my mind enriched as I have lain in bed, unable to move my body, but able to let my mind reach out to a loving and kind Heavenly Father, who through the Holy Ghost, has inspired and blessed me more than I could ever say.”  (Jack Rushton)

The beginning of the day also can include family prayer &/or personal scripture study.

 

Some days, I have someone who comes to help during the week.  She is scheduled to come for a few hours, several times a week, but that frequently changes!  She helps me exercise/do therapy–I try to get 1-3 hours of therapy Mon.-Sat.–I mostly do mostly physical  therapy the days at home, but I also do equine (horse) therapy, music therapy, my own “speech therapy”, & occasionally aquatic therapy.  She also helps me to do any odd jobs that a mother might do (I write her a list—sometimes it has jobs I can’t do, like “sweep my elevator floor”, & sometimes it’s finishing something I started, like hanging something I made & printed).  We also try to squeeze in some scrapbooking!  I try to be very structured with my time, so i can receive help from others.–Sometimes this means that I can’t go places w/the family when they/I want to go, cuz somone is scheduled to come help me!

 

When I am alone, I do stuff about the home (like any SAHM), I love to organize (& if it’s tactile, like organizing a drawer, this often lends towards good occupational therapy), I enjoy making schedules/lists, I burn CDs, I read & type emails or in my journal, I scrapbook (if I’m lucky!), I work on my current volunteer job at church, I read on my iPad (great therapy for my eyes) or listen to an audio book, I watch TV (I rarely do this, but sometimes I TIVO shows I can sing with), or I talk & visit w/a friend (this can be great speech therapy).

 

I also try to have a “date day” w/Mark (I may do horse or swim therapy, go out for lunch, see a movie, or just run errands w/him, or he may take me to get my hair done).  We try to hold FHE (Family Home Evening) once a week, & in the evenings, I try to hang out around the family the rest of the night, so my iPad has become like a laptop & texting phone! If the family watches a movie, I may do a therapy as we watch (ie. Lift weights, sit on a mat, bounce on a peanut ball w/mk, mk may help me stand, or I may just practice leaning forward in my chair)… I rarely do anything without finding a way to do therapy: For ex., in the shower, i may do toe or leg lifts…another ex. Is that as I lay on my bed & get dressed,

  1. I may count & do sit-ups,
  2. I may say the alphabet or say difficult words (they are easier to say laying down),
  3. Or I may do some breathing exercises from music therapy…