links

A friend found my LDS Living Article online here:
http://ldsliving.com/story/74951-sticking-together-one-couples-amazing-love-story

It has a few differences: different title, & less pictures, but has the video I have on YouTube. However, both say the stroke occurred in Texas, but I want everyone to know it occurred in Indianapolis, Indiana. I lived my 1st, & hardest, post-stroke year there, & had so much love & support from my friends there! In fact, the video at the end of the article was made by my wonderful husband, for these friends, & some of them are seen in it!

Another friend posted this on Facebook, & said to listen to it, not to read it:

http://www.npr.org/2014/02/07/273046318/henry-and-jane

It is about another couple like us, only just in reverse (the husband had the stroke) , so it was like déjà vu in some things-like the way he talks & laughs & says how his wife is the true hero -yet it was also interesting to be the outsider looking in, & to hear what others hear when I talk!

An update on my speech:

I’m not sure why it affects me, but if I’m tired/feeling lazy or feeling bad, mad, or sad, I don’t feel like I can talk around the person that is affecting me (maybe I don’t want to put forth the effort to talk, & just want to be done with it, versus repeating again & again, until I’m understood), so I sign! I have friends who want to learn ASL, but i won’t let them, & I enjoy visits where I try to just talk for 30 min.-1 hr. My goal is to only talk, but if I’m home, though I’m too chicken 2 actually do it all the time, cuz i get tired! it’s also hard to start, after i’ve been quiet (I often need 2 clear my throat, but I can’t), but once i get going, i’m good!

New Trick!

It’s been a rough week, & I needed to know God was still there…not that I thought he left, but like any child who needs a hug from their dad…I got what I needed:

for 10 years, i’ve been like a ragdoll, & i finally have a new trick: while seated (w/only back support), i pull myself forward 45 degrees, held it for a bit, then let go of the grab bar, & briefly balanced myself! Sometimes I can lean forward more, or sit back up, with no hands! I believe horseback riding has contributed a lot to strengthening my core!

Then today I found this on my brainstem stroke group on facebook, from Carol Dawson:
“My beautiful daughter Rachel has locked in since last May but is fighting her way out! I told her the first week that she has lots of people that love her, the medics are doing all they can to help, BUT that YOU are the only one in there with your body and can tell year body to heal itself, I know how strong and determined you are, so I want you to GET BOSSY with your body and keep telling it to repair pathways or build new ones! She raised her eyes to say “Yes” and has been amazing everyone ever since with her progress :)”

Everything I have comes from God, & I’m so thankful! I have been so blessed w/so much love from family & friends too, & am so grateful for that! I am also grateful to be able to have the means to afford the therapy I need!

“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!