My double vision has improved. U can write normal, though I won’t complain if u write in a larger size! My iPad blows up font, my computer can speak what’s written, I have a large moniter (so small font looks big) & since my eye muscles seem stronger (probably ffrom daily use of my iPad mini), while I still have double vision, I have “gotten used to it”, & can usually read smaller font—as small as size 11, if my contacts aren’t yucky!
My hand always wants to curl up. What do you use to straighten out your hand?
My left hand likes to curl as well, but I straighten my hand (I hold it down & strap it- w/the 2 Velcro strips that are attached to my chair, 1 at the wrist & one at the knuckles) everytime I get in my chair.
Let me explain: years ago, my “paralyzed” (my hand feels stuff, but it can’t move voluntarily) left hand was annoying me, so as a joke, mk strapped it down. but I loved it, so I always do it now! It’s probably bad that I can’t use it’ but ii has it’s pros & cons, & for me, the pros outweigh that 1 con!
Then when I was getting my permobile w/c, the sales guy saw my Velcro strap, & said he could put a permanent one on my new w/c, cuz the w/c company sells these Velcro straps that attach to the chair (though thx goodness my mom sews so well & was able to switch to some heavy duty Velcro, cuz I put a LOT of strain on these little straps!)
Anyway, here’s my pros for using a Velcro strap on my ?paralyzed? hand::
1. It’s such a headache having to constantly guard my left hand everytime I laugh & sneeze (cuz my arm contracts into my body, & falls off the armrest)!
2. It does allow me to use what left side strength I have (think in the left shoulder). With it, I can straighten my arms to lift my butt & move it right, forward, & back. But w/o it, my hand falls off of the armrest, so I don’t have the leverage to lift myself!
3. It also allows me to lean forward (say to scratch my foot) & “catch myself” so I don’t fall out of my chair.
Are you talking every day now? Do you sign much at all anymore?
Yes, I speak daily, but how much I speak depends on the day. There are weeks where talking comes easy (especially in my house) & I mostly speak all day long. But there are days where I have to really work hard to get going, so I’ll get lazy & sign 20-50% of the time. I speak louder & best in my home, but no matter where I am, I need to “warm up,” so the 1st few things I say are harder to get out, tend to be quite delayed, & are not as clear. However, if I lay back, or get a bigger breath, I clear up.
My music therapist is trying to strengthen my “normal” speaking voice, so I use it instead of my “forced” voice. So, I have been asked to sign instead of force myself to talk, but to speak as much as possible in my “natural” voice. I don’t know if I do this as well as I should though. I don’t really stop like my therapist wants, cuz I love talking! (My favorite thing to do is if my kids play the “quiet game”, I like to make noise & be the 1st one out, just cuz I can! Lol). But if I say something, & am asked to repeat it, since I tend to force things if I have to repeat things, I sign it, usually, so I don’t strain my voice. When I was briefly in Utah for the 4th of July, my father-in-law (who last saw me in like Feb.) commented how while I speak less in quantity, the quality I’m speaking is amazingly different!
The more I work on strengthening my natural voice, the clearer I get. I now can usually speak in the car (well, I get lazy w/mk, & sign more to him), & I feel confident enough to speak around friends, strangers, & acquaintances, since most understand me (especially if I’m in my home), & if I’m not understood, I’ve become quite confident in my writing abilities! The key to understanding me is to focus on what I mean & the overall statement, rather than figuring out every word as I am saying it, cuz some words are clear, while others are not, so if u focus on those few words u understood, u can usually get the idea!
summer’s ending…
It’s been a while & a crazy summer!
Tuesday, I was getting out of my elevator, when my bell that I use to call for help (it’s velcroed to my chair) fell. I used another bell to call for help, & went back in my elevator, looking for my bell. Apparently, it fell on my footrest, which is why I couldn’t find it, so when help came, I was reprimanded for not getting out of the elevator, & then letting them retrieve the bell from my footrest.
Normally, I can’t explain myself, so I just have to deal w/someone misunderstanding my behaviors & feeling frustrated w/me. But this time I said, “I didn’t know where it was!” & the person immediately apologized & hugged me!
Such a small, stupid incident, but it meant so much to me! I have had a few of these kind of incidences lately &, just as there was a jump in my quality of communication when I went from blinking to ASL/signing, I am starting to feel it again, & I can’t tell u the joy it brings me!
As I told a friend who was helping me w/a problem recently: “I tend to try to make possible what appears impossible. Sometimes it works, & sometimes I have 2 wait & be patient until the impossible works. I waited 10 years to talk, so I think I can wait (for more)!”
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!


