Recovery

My 10th stroke-a-versary

10 years! Wow! A lot has happened…here are some highlights of the last 10 years–Some of the things listed below weren’t “achievements”, but highlights (like seeing Donny Osmond in concert):

Journalling on the scrapbook pages:

2004:
“The eyes are the window of the soul” Mary Anne Radmacher

• I’m alive, after a nearly fatal brainstem stroke in March 2004.
• In April 2004, I began showing voluntary neck movement to my right, & by May, I could move my right thumb and came home from the hospital at the end of the month.
• In Sept. 2004, the LDS (The Church of Jesus Christ of Latter-Day saints) prophet, President Monson wrote to me.
• In Sept. 2004, I started to develop significant movement in my right arm, so in Nov. 2004, with the help of several ward members, I went to the temple for the 1st time post-stroke.
• In Sept. & Oct. 2004, (this was a huge deal), I started to fingerspell & use a modified sign language, instead of blink spell.
• By Nov. 2004, I had gotten rid of all my tubes (trache/breathing tube–August, catheter—Sept., & feeding tube—Nov.).
• In Dec. 2004, I was the proud owner of my 1st power wheelchair!
• On New Year’s Eve I received my 1st calling/volunteer job (in the LDS church) post-stroke, as co-teacher with Mark as the teacher of the 8 year olds (Zach’s CTR8 teacher in primary).

2005:
“When life hands you lemons, always ask for sugar.” Anonymous

• In Jan. 2005, I start doing knee bends w/help (someone pulls out my knees, & I stand up) while at a 75 degree tilt on the tilt table.
• In Feb. 2005, a friend from church taught me how to watercolor.
• On March 14, 2005, I posted for the 1st time on my website. Mark had introduced the computer about 5 months earlier, but it took that long to have the strength & ability it required to feel capable of posting.
• In March 2005, if I don’t think about it, on occasion, I am able to produce word sounds.
• April 2005, saw my long time “love” (Donny Osmond) in concert.
• In May 2005, I was introduced to digital scrapbooking.
• In June 2005, I moved to a warmer climate, where we were building an accessible home (which we moved into in Dec. 2005), & MK assumed his role as my primary caregiver & a full-time dad w/o help.
• In July 2005, I started playing the piano again, 1-handed.
• In Aug. 2005, I started moving my left shoulder (where there has been absolutely NO movement since my stroke).
• In Sept. 2005, I was asked to be co-Activity Day Leader at church, where I taught the 8-12 year old girls at church through spiritual activities.
• In Oct. 2005, I started a digital scrapbook class
• In Nov. 2005, I made 3 pies from scratch (apple, ice cream, & pumpkin)!

What are some of the most valuable lessons our parents have taught you?

I would have to say that one of the most valuable lessons I have learned growing up is to work hard and to never give up – try and try again. Or, as the little blue engine would say, “I think I can, I think I can, I think I can.” Even when the going gets tough, or when you are too shy to try one more time… you aren’t allowed to give up — things always seem to work out in the end if you have faith, say prayers, and believe in yourself. I learned this through tough experiences in my own life where mom and dad helped me to continue on, no matter how hard it seemed. I also learned it by watching them through their examples and their trials and happy times in life. There is nothing so strong of an influence to a child as a parent’s day to day actions.

2006:
“I am always doing things I can’t do, that’s how I get to do them.” Pablo Picasso

• Feb. 2006, I discovered that I have PBA (which is why I laugh/cry uncontrollably).
• Around June 2006, I started music therapy, & can grunt vowels–I cannot yet say stuff on the spot or if I am asked to say something.
• In June 2006, I began my current website/blog.
• Sept. 2006, I could stand &, if I was held right, I could walk in the pool.
• Oct. 2006, I took aquatic (swim) therapy.
• By Oct. 2006, I have reduced the number of times I need to be turned at night to once at night.

2007:
“Achievement—only those who dare to fail greatly can ever achieve greatly.” Robert F. Kennedy

• Feb. 2007, my new, & current, website began.
• March 2007, all my kids are beginning to understand my ASL
• In May 2007, I met the presidential candidate, Mitt Romney.
• Aug. 2007, I was asked to be the Ward Historian, & keep a record of what we do, at our LDS church.
• In Oct. 2007, I was a presenter at an international doctor conference in Cleveland, OH.
• I was published in the April/May 2007 issue of Simple Scrapbooks Digital Scrapbooking magazine.

2008:
“All things good to know are difficult to learn.” Mary Anne Radmacher

• Feb. 2008, I figure out that I can suck through a straw!
• In the spring of 2008, I was called as an Asst. Ward Music Chairperson, & find special musical numbers for the Sunday Meetingin our LDS church.
• In July 2008, I started to play the recorder & increase my breath support.
• In Sept. 2008, my article “Primary Songs Blessed Me,” was published in the Ensign, a church magazine for The Church of Jesus Christ of Latter-Day saints.
• In Oct. 2008, the LDS prophet, President Monson wrote to me again, & actually remembered me!
• In Dec. 2008, I performed in a church play, as the angel Gabriel, who announces christ’s birth.

2009:
“It’s kind of fun to do the impossible.” Walt Disney

• In Feb. 2009, with the assistance of a computer program, I finally can read all of my own emails (instead of waiting to have them read to me), regardless of the font size!
• April 2009, I touched the top of my head while sitting!
• May 2009, I blew out a candle.
• June 2009, though I’ve done it on rare occasions since 2005, now, even if I am not sitting “exactly right,” I am able to use my right arm to pull myself so I can lean forward & sit back up.
• In Nov. 2009, I was asked to monthly teach the 12-18 year old girls at church

2010:
“The greater the difficulty, the more glory in surmounting it.” Epictetus

• March 2010, I independently feed myself a whole meal, without using an arm support.
• April 2010, I start being capable of caring for my left hand.
• In June 2010, I spoke to the 12-18 year old girls at the LDS church girls’ camp.
• In Dec. 2010, I rode 2 rollercoasters at Disney World: “Tower Of Terror” & “Aerosmith’s Rockin’ Rollercoaster.”
• Again, in Dec. 2010, I performed in a church play, as the angel who announces Christ’s birth.
• About Dec. 2010, I started smiling with booth sides of my mouth, using the muscles on the left side of my mouth!

2011:
“The flower that blooms in adversity, is the most rare & beautiful of all.” Mulan

• Jan. 2011, I can now say most of the alphabet, many words, & several phrases.
• In Feb. 2011, while casually reading an email from my yahoo stroke group, I find that I was published in a British Medical Journal, as an example of how attitude can affect us, & to show that there is life after stroke…here’s an excerpt:
“…the ability to speak was powerfully predictive of happiness, the researchers found. The odds ratio for having happiness scores of 0 to +5 was 20.47 (95% CI 1.89 to 221.45) among respondents who indicated they could say words or sentences.
Another factor that may help patients maintain a positive attitude is mental discipline, as indicated by blog posts from a patient with locked-in syndrome since 2004.
The patient, an Indianapolis woman whose name is given as Jennifer Ann Lynn, developed the condition at age 30 following a brainstem stroke. Her husband started the blog almost immediately, but Lynn herself began contributing in 2005. She regained some hand movements and was able to control a computer as well as an electric wheelchair.
She also regained some speech ability, but in a post from December 2010, she explained that whispering and shouting were still impossible.
But, Lynn wrote, “I don’t usually let myself think that, [because] it’s dangerous. It’s a matter of perspective: I can’t think, ‘I wish …, I want …,’ or dwell on what I can’t do.”
• In Aug. 2011, I went in the ocean on a family vacation to Destin, Florida.
• Although I’ve been capable of writing short things since 2005, as of Oct. 2011, my handwriting has become more legible & I can write more!
• In Oct. 2011, I was written about in an observation by Jack Rushton, a man I greatly admired.

2012:

“Blessings come in disguise. And challenges can be a blessing.” Actress Diane Lane

• In April 2012, I gave myself the bread & the water (I’ve been doing just the bread since 2010), without any help, during the sacrament for the 1st time since my stroke!
• In May 2012, I was interviewed & videotaped by Mormon Messages, & in Sept., I literally had 15 minutes of fame in a Mormon Messages video on you-tube.
• Sept. 2012, one of the greatest blessings in disguise: my falling off of a curb in June resulted in a hospital trip, which directed me to a doctor who gave me medicine for my PBA!
• In Dec. 2012, I was published in a Fortune magazine article, with my dad.

2013:
“God has equipped us to do just what He wants us to do?When God gives an assignment, it comes with His enablement.” Dave Branon

• As the year progressed I began to have enough control over my eyesight that, while double vision remained, by the fall of 2013, I could read smaller font, & books on my mini iPad.
• Throughout this entire year, I really grew in my speech capabilities, so I was now able to say more complex & intelligible words & sentences, & often be understood by others.
• In March 2013, I was given a new calling as compassionate service leader, helpingorganize service with the women (18 years old & up) at church
• As of Sept. 2013, I’m finally independently feeding myself for every meal in our home, & most meals when we go out.
• About Oct. 2013, I start doing knee bends on my own while standing straight up on the tilt table.
• In Nov., I started equine therapy, & went horseback riding! Within 6 lessons, my trunk support was at least twice as strong!

2014:
“Anyone who says it can’t be done, is usually interrupted by someone doing it.” Anonymous

• I was published in the Jan./Feb. Issue of LDS living magazine
• In February, I met Elder Oaks, an apostle of the Lord, from The Church of Jesus Christ of Latter-Day saints.
• As of March 2013, I start having conversations & recieve help from people who don’t know ASL, but understand me just fine

utah

Friday, I experienced some very mixed feelings that came from being a stroke survivor, mother, & wife, & I never thought I’d have 2 decide between them:
1. as a stroke survivor, I was proud of myself & cheering at my accomplishment.
2. as a parent, I was upset & slightly disappointed, because my accomplishment came from cleaning up after a disobedient child who left a mess, after several requests to clean (so i did it).
3. as a wife, i couldn’t be upset, but instead embarrassed that i didn’t follow through on my earlier request to make sure it was done, so i felt partially responsible (hence, why i attempted to clean).

In other news, my family recently went on a trip to Utah. My dad was receiving an award at his old college, so we went with a bunch of family & made a ski trip out of it.

Due to poor blood circulation (from my lack of movt.), I am always cold! (Seriously, I freeze at 70 degrees, & I’ve just become accustom to having a cold left hand!). So, I have always vetoed trips where it is cold (the entire family has asked b4 to go skiing). But i figured that my family is always making sacrifices for me, so it was my turn to make a sacrifice for them, & they’ve begged to be in snow. (Poor Soph was only 2 1/2 years old when she had her last winter w/a lot of snow, since I had my stroke & we moved to a warm climate…& while it has snowed here, it is more like a dusting, & Soph has been longing to build a snowman, & make snow angels!)

While we were gone, I didn’t do a very good job practicing my therapy! Sure, it’s vacation, but even on vacation u exercise, etc., & therapy is my exercise! But what I did a lot was talk. My therapist has said the best therapy practice I can do is talk/have conversations & luckily, that week was when I usually have my best speaking week of the month, so I enjoyed talking to my sister-in-law, her friend & friend’s daughter, who were there tending my baby neice & nephews as my family & extended family skied. We just talked a whole lot, & it was cool, cuz they got so good at understanding me, which just seemed to encourage me to talk! I actually looked forward to it (I don’t recall the last time I looked forward 2 something that way), &I felt relaxed, comfortable, & confident in my speaking skills. by not feeling pressured, I didn’t face the problems I get by “thinking or trying too hard!”

Also, I can’t explain it, but the new torso strength I already have built up (thxs 2 horse therapy) helped so much in so many ways on our trip–it was exciting! not only did it physically help, but it also eased my anxiety about my limitations!

Overall, even though I never felt “warm” (unless I sweat from the insane bedshets!), I enjoyed the trip. I rarely get to see the benefits of sacrifice, & while I know sacrifice increases your love for another person, seeing how happy every1 was, made a trip in the cold worth it.

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!

HOW ARE CHRIST’S SACRIFICE & MY SPEECH RELATED?

I know people compare their lives sometimes to rollercoasters. Lately, my life has not only been like a rollarcoaster, but DisneyWorld has a ride called ” The Many Adventures of Winnie the Pooh” that my life seems to literally & figuratively be like the Winnie the Pooh ride, where guests ride in “spinnable” honey pots through what was conceptualized as the best scenes from the three Winnie the Pooh featurettes, & the tracks take you on a wild ride, turning & twisting, banging into doors & walls, etc.

maya & dima came Thursday night, 12/19. maya is staying at our home, & doing a fabulous job at learning 2 languages (english & “jenny-ese”)! dima i hardly ever see–he’s staying w/some neighbors.

I keep a practice log for music therapy, & thought I’d share these notes from it:

Friday, 12/20–Our 1st full day w/Maya (our Ukranian visitor who barely speaks English)—both of us seem to have improved w/our English skills, & she seems to understand me!

Sat., 12/21–I told Maya that she looked “beautiful”, & she totally understood me!

Mon., 12/23— Today was the 1st day I had to use google translate w/Maya

Christmas Eve, I saw a friend who hasn’t seen me in a year. Last time she saw me, I could vocalize & say things like “ah”, but that was it. That particular day was a very good speaking day, so I’d answer her questions w/words & short sentences. She did quite well at understanding me, & was almost in tears that we were TALKING, & loved telling people, “did u know she can talk?!?”

this month, we celebrated the birth of Christ. Why is that birth so important? the answer is in John 3: 16, which says: For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life.

Recently (ironically on Christmas Morning), I had an experience that had me marvel at the Christlike behavior I saw, & I thought: did Christ not also sacrifice himself 4 me? It seems a sacrifice worth remembering, & the best way to honor that sacrifice is to do what that sacrifice was for: repent & change.

For me, part of my changing requires me to return to no signing days. No signing days stopped over the summer w/the family when Dima & Maya came (though I still did it Wed. mornings w/Angie, until very recently).

I’ve been to chicken to do this, & I keep brushing aside: “While no signing days have been helpful for me to re-learn speech, there is another benefit, & it will help me in other ways as well.” Even though my speech is like 100 times better, i am scared & terrified of doing no signing days again, & I’ve been justifying it, by thinking, “Well, I often speak the majority of any day now, & only sign when I HAVE to, anyway!” But I’ll be upset if I don’t try it out, too, & it seems like it is precisely what I think I need, in order to grow the way I should!