Author: Jenny

In March 2004, I suffered a severe brainstem stroke, & was "locked in" for several months". I have been married to a wonderful man, Mark ever since Dec. 1994, & we have 3 kids: Zach (1997),, Jessica (2000), & Sophie (2002). I have been blessed in so many ways by God, so I wanted to keep a blog to share my recovery, life, & answer questions.

You can do it!

A while ago, I visited a stroke survivor in the hospital.  This was not my 1st trip back to a hospital (the 1st time, I was freaked out, cuz when I came home from the hospital after my stroke, it took years before I could watch shows on TV that showed hospitals), but I’ve been fine, so I thought nothing of it.   But this was so familiar that going to the hospital brought a  flood of memories of being locked-in.  Both of us were pegged as being stubborn, & I realized that as a necessary characteristic of stroke survivors.  While being stubborn can be a bad quality, it can also be good, if it is determination & persistence…in fact, it can be quite necessary for stroke survivors!  Case in point:

Before leaving for the hospital, I finally did something that has required lots of trial & error, but I FINALLY did it:  Around the time that I was becoming more independent, by being able to make many of my own breakfasts & lunches, I was introduced to this Superfood shake that is a powder…which I needed help mixing with a liquid. It killed me that I again needed help making my breakfast!  It wasn’t like it only was something I wanted occasionally, but I wanted it EVERY DAY!  So, I was taking a step back in my independence… To make matters worse, for some reason the girls hate making them for me, so it felt like a burden!

Well, I have a can of the powder mix on the kitchen counter, but for months, I wasn’t strong enough to open it…so I have a grip exerciser that I have been using as I watch TV.  When I could open it, I thought that was it—but I was wrong…very wrong!  The first time, powder went everywhere, & I was not so good at shaking it.  The next time, was less of a mess, & I stirred it with a fork, which was better, but my daughter still had to vacuum up my mess.  The next time, I thought I was so smart by using a funnel, but the neck of the funnel was too small, so the powder got stuck in the neck of the funnel, & I made a mess again.  So, I got a new funnel with a wide neck.  FINALLY, I could open the canister, not make a mess pouring the powder, & mix my own shake!  It took me awhile; but I finally made it by myself, without making a  huge mess!   I still have not mastered it, but it’s a start!

So, to all of u who are struggling:

“I was giving up. I would have given up – if a voice hadn’t made itself heard in my heart. The voice said “I will not die. I refuse it. I will make it through this nightmare. I will beat the odds, as great as they are. I have survived so far, miraculously. Now I will turn miracle into routine. The amazing will be seen everyday. I will put in all the hard work necessary. Yes, so long as God is with me, I will not die. Amen.”

― Yann Martel, Life of Pi

PBA and depression

Friday we were supposed to fly to Idaho at 8:30 am, with a layover in SLC. All seemed well-we were checked in, told it was on time, & there was a plane…but no crew!  We ended up not leaving until around 3 pm, so we ended up driving to Idaho from Utah, & missing our tour of BYU-I. (bummer), but I wrote this post as we waited;

Awhile ago, I watched an hour long presentation on Neurocarelive.com about PBA.  If u forward about 19 minutes in, & watch until about 25 minutes in, it discusses the differences between PBA & depression.  Since PBA (PseudoBulbar Affect  Disorder) is an inability to control your emotions, & often is classified with uncontrollable laughter or crying, it is commonly mistaken for depression. Though it is possible to have both, PBA is a neurological disorder, & is not “sad on the inside,” like depression.  In this blog entry, I will share how I have dealt with both of them. On my recommended sites, I recently added a blog for those suffering w/depression, & I also have shared some websites that offer PBA resources.

One of the most effective ways that I have found to deal with PBA is distraction. At first, I thought this required me to leave the room, & if I can, that is great, but it can also just mean a change of position, a change of eye position, or as simple as scratching something, or thinking of something else. Focusing on my breath, & taking smoother, bigger breaths has also helped me.

I was once asked about the medicine I take for PBA (Nuedexta), but in the above mentioned video, it explains that before medicine was made specifically for PBA, anti-depressants were used.  Here are the Three Main Treatments for PBA (according to Neurocarelive.com)

1)     Tricyclic antidepressants (TCAs) – Examples:  Amitriptyline (Elavil), Nortriptyline (Pamelor)

2)     Selective serotonin reuptake inhibitors (SSRIs) – Examples:  Citalopram (Celexa®), Fluoxetine (Prozac®), Fluvoxamine (Luvox®)

3)     Dextromethorphan/quinidine (DM/Q, Nuedexta®)

A great tool for depression was suggested to me years ago, & though I have  shared this before, I want to share it again: When I was struggling during the 1st year after my stroke, my husband (who is a pshyco-therapist) encouraged that I start writing down all I am grateful for.

At 1st, I thought he was crazy–I couldn’t talk, or even move, & wasn’t even happy to be alive (even though I had requested to live, certain that I’d “get better” fast).  So, what was I supposed to write???  It took me 3 years before I tried making a gratitude list, & I started because my family got lice–but I did not get lice, because we never shared chairs…so, it dawned on me that I was grateful for something–as minuscule as it was!  Ha!  Ha!  It took me a LONG time before I could say/write that I was grateful to be alive, but now, anytime something bothers me, I look for the good (ie. before I could move, I couldn’t get myself a snack, so I wrote about how it was  a great forced “diet”! Ha!  Ha!  I suggest writing the list though–I tried first to just think about them & pray about them, but writing them down firms them up in your mind, & allows the spirit to talk to u & remind u of other things.

Anyway, I still have days I struggle–many of my posts come after those days: the sprit speaks to me as I type, so all the inspiring stuff on my website oftentimes is the Lord strengthening me, too!

Yellowstone

When I was in junior high, we ran the mile at the beginning & the end of the year, & since our grade was based on how much we improved during the year, I always walked it at the start of the year.  My dad saw me walking it one year, & I have never lived it down.  PE was never a subject where I excelled, so it was quite funny when my 1st long-term subbing job was  as a PE teacher!

Our family visited Yellowstone this weekend.  Given my history, I never thought I’d say this, but as my husband pushed me around, I got so jealous of the exercise his body got!  I’ll admit that the reason I first thought it, was because he loses so many calories that he can actually eat (I have to eat like a bird, since I don’t burn many calories…)  But then I realized that I actually miss the feeling of tiring my body, & getting sore muscles…but before I could have a “pity party”, I remembered that I found a  therapy in Nov. 2013

that does make me feel tired & sore…horse therapy, which started up again last week, & has left me so exhausted that  I can barely move for a few hours afterwards, & sore for days!  But it makes me so happy!  J

It was beautiful in Yellowstone, & we saw a lot of geysers, but I did not see even 1 animal, unless u count what I saw when we went to Bear World in Rexburg, Idaho! (Having double vision does not help me focus quick enough to see anything that is moving).  My daughter, Jessica, made this video after our trip to Yellowstone National Park  (any animals you see are from Bear World, in Idaho, which was the coolest part of our trip—the girls  got to bottle feed baby cub bears!): https://youtu.be/Tr9cgyWlcOo

 

I’m so lucky!

I recall how soon after my stroke, there was a day that I was  miserable, & in his attempt to point out how lucky I was to be alive, my husband mentioned how I’ll get to see my kids grow up.  I have thought about that comment several times, but I don’t think I fully appreciated that comment until now: I have always assumed I’d feel that way on their wedding day, so I was surprised how special this was…My daughter, Jessica, has always wanted to be a  vet.  Today she started her internship as a Vet Tech, I had a  flashback to the day she started preschool…she was so excited!  This was  back when I couldn’t move, & she sat by me, & just talked & talked, as she turned in her swivel seat!

 

Playing “catch up”

I haven’t posted in a while.  In June, we returned from a Disney cruise that went around Northern Europe (we went to London, Denmark, Germany, Sweden, Finland, Russia, Estonia, & the Netherlands). Oddly, London seems more accessible than the US! Mark & I planned to just go with my girls. But my family heard about it, & 23 more people came along! It was a blessing in disguise that so much family was there, because Mark had a kidney stone, & was sick for part of the trip, but there was tons of family there to help w/me!  My kids could’ve helped me the whole time (Jess is freakishly strong, & if teenagers want to help, they can be a great asset), but it was nice for them to be able to share the load, so they could still be kids!  & though it’d have been better if Mark did not have to be sick, if I chose where to have him be sick, the cruise was handy because  there was so much help w/me, w/the cooking, & with the cleaning!

 

This cruise, the elevators are a lot less crowded with strollers, walkers, & scooters, & since I had been out & about more with me driving (since Mark was sick), I knew the ship better…so, I got adventuresome & opened the theater doors (so I could get out of the theater while the show still played), went from floor 5 to floor 3, so I could check out a game, then came up to my room on floor 8–ALL BY MYSELF!!!   From then on, if I wanted to see a movie or something, I just took off!  (I could because my room had an automatic door opener)  It was awesome!

 

About those elevators, one of my biggest pet peeves on cruises is that the stairs are ignored & elevators are heavily used by EVERYONE!  I wish the crew members gave wheelchairs priority on the elevators.)  I get that elevators are used by those who may have trouble walking, have bad knees, or when like 7 flights of stairs to climb, so I try to give people the benefit of the doubt, but when an elevator that is going down opens, & is packed with healthy teenagers who just shut the door, it is hard to remain positive! Sometimes I wish I wore a sign that said, “u can walk, & I can’t.” Or “Laziness is NOT a disability!” (However, I shudder to think of how inconsiderate I was pre-stroke!).

However, on this cruise, I witnessed something that I have NEVER seen before: There was an evening where I was with a family member who had a stroller.  I was trying to return to my room after a movie, but elevator after elevator was packed with, what appeared to be, healthy people. When another elevator opened & was again full, a man (who I had met a few days before) stepped off the elevator, telling me to get on. My brother knew there was not room for the   stroller AND me, so he said we’d wait for the next one, so we could get on one together. The man (Rob?) then proceeded to empty the elevator for me!  I was so touched & impressed by Rob!  Every now & then, I meet someone who is kind & does stuff like giving up a table for me, or opens a door for me, but I have not witnessed such a dramatic move!

 

In July, we had a taste of the future as empty nesters, since the girls were gone so much at various camps.  While I think most parents put things aside when their kids are born, & I think those things start to resurface again when the kids leave, we mostly played catch up, since it was only 2 weeks!”…But I think it will be different in 3 years (yes, I am that old!), when my kids really leave,

 

Recently, we got a foreign exchange student–Giuli (Julie) from Switzerland. She will be here until January.  Her English is incredible, & she can already understand a word or two from me!  It is possible she just understands the context & catches one word that I say (she is smart), but it is great that we can communicate! 😜

 

Lastly, an article was printed about me in BYUMagazine (where I went to college): https://magazine.byu.edu/article/finding-her-voice/  Thanks to my dear friend, Laurie Smith, for the awesome family photo that is at the beginning of the article, & a shout to my friends in Indianapolis, IN, who were there for me the first year after my stroke!