it’s been awhile…

It’s been awhile! June tends to be a pretty busy month with school ending, & all the church activities/camps also, we are going to build a new house, so we’ve been focusing on that!

Why are we moving? I guess a lot has to do with me–i’ve outgrown this home: it was built back when my prognosis was to blink & not move…they thought i’d just stare at our pretty view all day!

the new house will be like 10 min. away from here, but it was a roller coaster finding it! mk & jessie have been bugging me for years to move. at 1st, i didn’t think i wanted to move. i hate change, was comfortable, & FINALLY settled (it took years, since i could only move & organize stuff, when i had a body there, specifically helping me!)

so years ago when i was 1st approached, i thought, “i just got settled, & u want me 2 do it all over again?!? no way!” but this time, i finally gave in & said, “we’ll talk, if u can find land”–& i gave some guidelines i didn’t think they could do: had to stay here, stay close to the church & have a grocery store nearby, but we had to be able to custom build.

it’s actually hard to find land in the area we are in, so at 1st we looked a little farther away than we wanted too, but the weirdest stuff happened when we bid on land that was farther away! I feel the Lord knew where He wanted us, & while this land eventually fell into our laps (just as mk was ready to give up), every other place we looked at was essential to leading us to where we ended up (which is interesting, if u understand the history for my church, because it had a similar situation). While our new place it’s more land than we wanted, it was priced so cheap, & was so flat (finding a large, flat area is tough where we are, but that is what we needed), yet it was so beautiful, so we (or should I say I? lol) couldn’t say no! (Plus is part of some wildlife tax exemption, so property tax is super cheap, which appealed to my “thrifty” side!)
i think this is where mk & i will be for quite a while!

i feel like i have lived on pintrest, preparing to meet w/our architect! but w/a new home, now i can open blinds, change room temp., etc. on my iPad! plus, I am dinging up this place, trying to be more independent: it wasn’t built for me to tool around the kitchen, & feed myself! besides, we want a 1-story home with the rooms i access, closer together: i can’t tell u how often i have needed to potty upstairs (where my lift is), but i’m stranded downstairs from a power outtage (granted a generator could help w/that, but i hate my craft room being downstairs, isolating me from my family!

In other news, i totally miss horse therapy, & while I can still do push-ups, I seem to be getting weaker—it is really hard to replicate what I do on the horse! There is a machine that attempts to replicate horse riding (iGallop), but it seems a bit advanced for me! BUT, I’ve been doing a lot of ROM lately, & it’s is totally helping me: Sunday i realized that my neck is turning more to the right, which is so awesome! Before it only would turn like 45 degrees, & my eyes won’t turn well to that side either, so I couldn’t see very well turning to my right…I had to either turn my chair, or sit on the right, so my head only had to turn left! but now i can actually see the “blindside” on the right! (it’s ONLY been 10+ years…lol) i keep turning my head to just make sure it’s still able to do it!

I am a “fixer upper”

Next Tuesday is my last time doing equine (“horse”) therapy for this season…I’m so bummed! I recently missed 2 weeks due to the weather, & by the end of this week’s session, I was too tired to even move my right arm, & I had to tilt my chair, cuz sitting straight was too much work for my abs! however, the 2 weeks previous (that I’d missed) had been full of therapy: something i love about mk is that if i develop a new skill, he capitalizes on it. no matter how minor a movement is, it does not go to waste with him! every little new movement he has me strengthen it, & he finds a way to use it to build my independence, so he has helped me frequently practice push-ups!

I can’t underestimate how valuable the support is from family & friends. For example, my speech wouldn’t improve nearly as quickly, if others didn’t allow me to speak, & try so hard to understand my words (which is no small task for them, but I’m encouraged to speak more, every time I’m understood)!

In my church, we have the largest women’s organization (called “relief society”). each woman, along with a companion, is assigned at least 2 other women to visit at least once a month, & help her, however she may require assistance (they are called “visiting teachers”). often, if it’s needed (like say u are sick or moving) they bring meals, or assist with childcare or clean a home. (in fact, currently I help organize this in my calling/volunteer “job” –we don’t hire people, & instead, every member pitches in to make the church function as a whole.). my visiting teachers went a step farther & in the past, they have come weekly to help me do therapy. other church friends visit & give me more opportunities to talk, while others have helped me when a helper was ill & mk was working, or when mk was away for a weekend– sleeping here, feeding & pottying me, doing therapy & helping me. (if u want to learn more about my faith, visit http://www.mormon.org. )

I truly feel blessed for the people in my life! As they say in the movie Frozen, I am a “fixer upper” & “you can fix this fixer upper with a little bit of love”.

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.

2 new things…

It was real windy during horse therapy Tuesday, which actually made it tough to keep my balance–strange cuz when I sit on my mat with Angie there, her son actually tries to knock me over, & I am proud to say that I easily resist him, so it’s odd that between the wind & a left arm that kept having tremors or something, I was throwing me off balance.

As u know, I?ve been trying to work on being able to straighten my left arm, since it really helps me balance in horse therapy. I have Angie sit me on a mat so I can do weight-bearing on my arm, & I?ve been working on figuring out which muscles straighten my left arm. Between horse therapy & the mat exercises, I?ve realized that I can move my left shoulder & left elbow?but I need my hand moved to where I can activate those muscles, & I?m not sure yet where that is.

If u’ve seen my YouTube video “Jenny’s Story”?you may recall seeing me sitting on my mat, or on my belly, with my arms bent, doing weight-bearing exercises on my shoulders. If I?ve fallen, I?ve always needed help getting back up.

However, today (Wednesday) I was doing weight-bearing on my straight arms & knees, & I collapsed. Without thinking, I did a ?girl push-up? & got back up! Since my left hand was in ?the right place? (where ever that is!) & couldn?t move, I ended up doing about 3 or 4 ?girl push-ups? by controlling the relax & straighten motion in my arm! My left bicep is shaking from the workout, but I am thrilled!

Also, I voted all by myself Tuesday: mk has always signed my name & I tell him how to vote for me (since I couldn’t see, due to my double vision, in order to do it), but I did it all myself this time. Luckily, I only had to choose 1 candidate on the ballot, & that 1 person was the only person I knew (I am not very knowledgable about political stuff), but it’s just one more thing that I was never supposed to do again, yet I did! Yay!

my speech these days…

1 of the girls who helps me (Angie) has a toddler who has been around me since he was 9 months old, so we’ve developed our speech together. He loves to help me, asks me to play w/him, & talks with me all the time. (In fact, I absolutely love how when he arrives, if he’s feeling “chatty,” he tells me all about his weekend, about his new favorite toy, or whatever he’s currently excited about!)

A few weeks ago (before Easter), he went up the “alligator” (elevator) with me. Upon our arrival upstairs, he noticed no one was there, so he asked me to go back downstairs with him, to his mom, but I said no, so he begged “please”. I again said “no, but u can go down by yourself”, which he started to do, when his mom arrived. How fun to be understood by a toddler! Though I’m fine if I’m not understood—then I just try new ways to say something similar, but even if that doesn’t work, I’m ok. I think that since my stroke occurred so many years ago, I kinda’ expect to not be understood, so it’s a bonus if I AM understood! 1 of the girls who helps me doesn’t even know ASL, & I’ve had friends offer to learn, but I’ve told them to not learn, so I can force myself to talk. (I just write on my boogieboard if i can’t get it out, if i care for them to know what i said!) My goal is for ASL to be handy, but unnecessary.

Angie & my daughter, Sophia, have always had a knack for understanding me, but more & more people are understanding me now. On April 6, a friend (who hasn’t seen me in awhile) came by my house, & I didn’t have to sign once for her! In February, I saw a college friend (who has seen me since my stroke, but it has been years), & she understood almost everything I said! I’ve also held conversations with the kid’s piano teacher, tutor, & my PT (horse therapist). My kids have become quite skilled at understanding my jibberish,& if mk doesn’t hear me, they translate…& I love being able to ask how they are, & have them respond—whether or not we are in the same room!

I wish I could say it’s like that all the time…I do speak a lot more most days now, (guessing I speak 70% of most days), but i have had hard speaking days as well where I sign more (like I may only speak 20% of the day). The day my friend came over, I talked awesome, so I spoke like 97% of the rest of the day, but until she came, I’d hardly been spoken to, so I didn’t realize it was such a great speaking day!

My speech can vary for many reasons:
1. If I’m in my home, I usually am able to speak more loudly, & clearly… Not as much out & about! I don’t know why, but I’m louder the more familiar the place is, & if I’ve been talking & “warmed up” my voice.
2. Some days it’s just hard to vocalize. & I give in & sign w/my family, because I’m guaranteed to be understood the 1st time I say it, & with my family, signing is faster than speaking on those days!
3. Other days, if I have mucous blocking me, I can’t speak, but after I cough or clear my throat, I speake just fine. The trick is waiting for that to happen—it can take hours! (Sometimes I just keep trying to scream “Ah!” until the phlegm loosens!)
4. Some days I’m too tired, sad, mad, or too lazy to put forth the effort to speak. I also don’t seem as clear then. I’ve been compared to Chewbacca, the teacher on Charlie Brown…
5. My father-in-law would say I speak better the better food is…I don’t know about that, though food is 1 of my few pleasures in life, & I do speak better if I relax & don’t think, & better food can help achieve that sometimes
6. My father-in-law would also say if I’m mad I speak louder & clearer. That I believe, cuz I take in more air, I don’t think too hard, yet think enough to try to be clear enough to make my point be understood (& if my kids claim to not understand me, I usually know if they did, but just don’t like what they heard!)

I’m sure I’m forgetting more things…