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.

My mouth was wired shut and I can’t get my words out and I just want to throw things at people when they don’t understand what I am saying. How on Earth did you get through this???

Hahahahaha!  (Not a mean laugh, that just tickles my funny bone!)   It was so hard adjusting, for about the 1st year!  It’s a quick, painful lesson in extreme patience!  I thought I was patient pre-stroke…but, it must be a different kind of patience!

However, I still have days like that, & on those days, Mark tells me that I’m like a toddler, throwing a temper tantrum–& he’s EXACTLY right!  Kinda gives u a new perspective on toddlers…

My Jessie was one tough toddler, & threw temper tantrums like U wouldn’t  believe…now I wonder if those were just times where she was too smart for her own good, & just did not have the words!  Because it can be beyond frustrating!

The key is to look at things as they are: when u have an eternal perspective, this frustrating time is just a blink of the eye!  & try to find the good in the bad—a little frustration is worth a fixed jaw.  Let things go, so if people don’t understand u, it’s ok (I’m an OCD personality, so at times I struggle w/following my own advice here!)

How’s my memory?

My son left on his mission this week (https://www.mormon.org/me/643G/Zach — the “about me section is old, but the rest has been updated), & if we are Facebook or Instagram friends, u may have seen a post & a scrapbook page I made about it!  I am often asked about my memory now-a-days.  It is 100% in tact, but when I had my stroke, while I did not loose my memories, it is like the “bridge to memory land” was burned…so many of my memories are triggered.  Luckily I’m an avid journal writer & scrapbooker.  I never dreamed that I’d profit by doing these things, but I have!

I am in the process of re-reading my old journals, & it has been an interesting process. I began writing just because I was told to, & became more frequent a writer because I wished that my anscestors had kept journals, so I had a connection to them, but since they hadn’t, I decided to keep mine for my future posterity… I thought that was it. But as I re-read things, I can see the Lord’s hand in my life 20 some years ago, preparing me for people & events in my life today!  & as I read, I feel that my stroke was no accident!

Scrapbooking provides me with the pictures that accompany the stories I write about.  (& if u like to look at my scrapbook pages, I added some new pictures of traditional pages I have recently made for Zach & Jessie).  Pre-stroke, I slowed down on making pages that might involve more than 1 kid…I wasn’t quite sure how to do it until scanners became so big in the scrapbooking world, & now that “the stars have aligned”, I have worked on finishing Zach’s baby book, & then I did Sophia’s baby book–I had never scrap booked my baby book for Sophia, the one kid who scrapbooks & would appreciate a scrapbook.  (Soph has seen her book & seen Zach & Jessie’s nearly finished baby scrapbooks, & though she has never said a word, it has always bothered me that her scrapbook wasn’t made!)  Now it’s Jessie’s turn…

After my stroke, I tried traditional scrapbooking on several occasions, but often felt discouraged or frustrated unless I “dumbed it down.”  It’s just so hard to explain the picture in my mind!  So I was thrilled to discover digital scrapbooking, cuz I could do my hobby without any help or need to explain the “picture” in my mind, & it was only up to my own abilities to see “my picture” come to pass!  However, I still had all those pages I had organized to do.  My mom gave me a glimmer of hope: she began scanning all of my scrapbook supplies & preparing them for me to use on digital pages–a huge job (which I appreciated SO much, cuz I’d been trying to do it myself, but with my double vision, it took me hours to do what should take me minutes, & I couldn’t see me scrapbooking traditionally very much in the future, so I might as well use what I had bought!)  That took care of everything after the year 2004 (when I had my stroke), but I still wanted to somehow traditionally scrapbook at least Sophia’s baby book.  I decided to give Angie a shot, anticipating to really “dumb it down”, since she doesn’t scrapbook.  But, boy, was I in for a surprise!

I don’t know if Angie just thinks like me, so she “gets” the picture in my head, or if it’s cuz I don’t allow myself to fully form a picture in my mind, so I’m not disappointed (I have been working on my OCD & anxiety, & it helps if I don’t let my OCD take charge) or if it’s both: But I will give Angie a basic idea, then just let her do her thing, & tell her to “make it  awesome”, & she does exactly what I’d do! ( For example, when Sophia was a baby, I came up with an  idea for a Cracker Jack scrapbook page, so pre-stroke I scanned all the stuff from a Cracker Jack box, & kept the wrapper–yes, I held onto that trash for 12 years!  The idea was a fuzzy picture now & I wasn’t sure how the page would work, but I did my best to tell Angie my jumbled thoughts, & then she said she’d find a way to make it happen!  The page she made is exactly how I would’ve made the fuzzy picture clear in my mind!)  Additionally, since I had journaled about the things I was scrapbooking, I could scan it, & still include my handwriting on the pages!

In  the past it wasn’t necessarily the people who helped me that made it harder, I just have evolved in 2 major ways:  1.  I’m a control freak, & I’ve needed to learn how to let go, realizing there are more ways than 1 way to do things, & the other ways may even be better than my way.  2.  My stroke affected my ability to process & use words well to express myself.  It didn’t take away my ability to communicate, just “slowed it down”. (For example, when I think I’ve written a post, I wait about 24 hours, so it can “stew”/process.  Usually I think of corrections &/or additions.  Often, I recall more “colorful” words, fill in the “blanks,” & re-arrange things to make more sense).  However, I don’t have time to process when someone is helping me that instant!   I’ve given in to that, which has been easier to do, since my helper just happens to have the talents & abilities that have helped me to evolve!

What program do you like for digital scrapbooking?

Adobe Photoshop Elements (PSE)

The last few months, I have focused on traditional scrapbooking, so be sure to check out the link on the right!

Recently, I did a “tradigital page”  (that is a page that includes digital & traditional aspects).  In the below picture of the page, most of it was done digitally: the word “baby” was pink, & said “our little baby”.  The crawling baby had pink PJs & a bow.  The words “big brother”, used to say “I’m a big brother.”  The pictures were dealt with traditionally, however, & put into flip pocket page protectors.

2016-04-29 10.05.05

(Note: the fudge wrapper was Zach’s “nursing pad”)

What is Locked In Syndrome?

“Locked In” is when a person is unable to move or speak, but their brain is 100% there, inside a body that can only communicate by blinking.    Maree Callis (https://www.youtube.com/watch?v=A3uEMyVnThI) explains it this way:

“I suffered a brainstem stroke which resulted in my being “locked in”. The best way for me to describe this type of stroke is to get you to picture a bridge over a river. On one side of the river you have “thinking” and on the other side you have “doing”. The bridge is the connector between the two. In my best Hollywood war jargon let me tell you – this stroke took the bridge out! This is a physical condition not a psychological condition. I am drug free, which leaves me with no brain cell loss. I have been blinking conversations for 17 years – this takes massive mental ability… I am 100% psychologically available.”

I struggle with 1 weak side on my body, & don’t know what to do.

I am not a doctor or therapist, but here’s a thought: have u tried e-stimulation?   (E-stimulation is recommended for soon after a stroke.)  However, if u can weakly move it, & u are just weak, but capable, so u may be interested in trying constraint therapy. It’d be super frustrating, but if you can somewhat move your weak side, it may be worth a shot! To do constraint therapy, u force yourself to use your “weak side”.  If it’s an arm that u want to start using, u might put your good arm in a sling & don’t use it — I think it takes at least 2 straight weeks–& it’ll build the muscles in the bad arm.