Recovery

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…

it DOES get better!

A while ago, I watched the movie “Million Dollar Baby”…it was a waste of 2 hours! It is about a boxer who hurts her spine & can’t move anymore from her neck down–but at least she could move her head & talk! Yet she just killed herself! (I was so disappointed, & thought, “she got a movie for that???) I understand the desire to die & how hard that 1st year is, but it DOES get better! So this post is to anyone out there who is recently injured, or just had a stroke:

In The Church of Jesus Christ of Latter-day Saints general conference this weekend, Dieter F Uchtdorf gave a talk ( https://www.lds.org/general-conference/2014/04/grateful-in-any-circumstances?lang=eng&media=video#watch=video ) about gratitude that was exactly what occurred for me. Let me explain: I’d always been an avid journal writer pre-stroke, so when I could finally use the computer again, i started keeping my journal again. I was miserable that 1st year after my stroke, so it was no surprise that one of my 1st entries took forever to type the simple words “i want to die!”

As i got stronger, my entries got longer, & one time i was listing all the reasons why i hated things post-stroke. My sweet husband, mk, saw my list, & encouraged me to instead make a list of what i was grateful for. i thought he was nuts!, & i asked, “what do i have to be grateful for?” he told me that for starters, i was alive! but i wasn’t grateful (then) that i WAS alive, so it took me years to have the courage to start that list, & a while longer before I could say I was grateful to still be alive…the poor boxer girl in the movie didn’t have anyone like mk 2 help her change her thinking, but when I made the choice to set aside bitterness & be happy no matter what, as the talk by Dieter F Uchtdorf teaches, gratitude helped me see my blessings & change my attitude, as my hope, faith, & testimony in God grew. I will be eternally thankful to my husband for this simple suggestion, as it changed EVERYTHING for me. & since not everyone has “a mk”, I wanted to pass it on, since I know how much it helped me!

http://c.brightcove.com/services/viewer/federated_f9?isVid=1&isUI=1

“Gracias, danke, merci whatever language is spoken, ‘thank you’ frequently expressed will cheer your spirit, broaden your friendships, and lift your lives to a higher pathway as you journey toward perfection. There is a simplicity even a sincerity when ‘thank you’ is spoken.”

–Thomas S. Monson, “The Profound Power of Gratitude,” Ensign, Sept. 2005, 3

weakness can become a strength

After the trip to Utah, our family went on another Disney Cruise (so fun), but between the 2 trips & 2 weeks of horse therapy cancellations, even though I did TONS of therapy when I was home, apparently it wasn’t enough:

Ether 12:27 from the scriptures (Book of Mormon, another testament of Jesus Christ)
“And if men come unto me I will show unto them their weakness. I bive unto men weakness that they may be humble; and my grace is sufficient for all men that humble themselves before me; for if they humble themselves before me, and have faith in me, then will I make weak things become strong unto them.”

Last Tuesday I was switched 2 a saddle (from a pad) in horse therapy, which I can’t believe how much different it is! It requires much more support from my torso. My music therapist has been focusing on my breath support, & has noted how much stronger my abs are on the right side of my body, so my rt. side was ready to switch, but not my left side–on a scale of 1-10 (1 being low/hard) it was averaged to be a 5. But it was a 3 on my left, while the right side was an 8!

The last 2 weeks I’ve returned so exhausted, it’s taken me 2 days to fully recover! It wears me out! I NEVER nap or rest, but last Tuesday I did rest, & I couldn’t wait for bed, yet I was still tired the next day! This week, however, I focused on weight-bearing on my left arm, so I am able to straighten my left arm, assuming it would help me get less tired in horse therapy. I was right. A straight left elbow helps, & my therapist did a great job positioning my left arm so I could find the muscles to straighten my left arm (though, right now, I also seem to tense up my left leg as well!), cuz usually, for some reason, the muscles are easier to instigate when my hand feels something to push on! It was still hard this Tuesday – a 4 – but it really helped! I took it easy the rest of the day, but when I did therapy the following day, I was still tired again, so I have some catching up to do!

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