Recovery

14 years ago…

After so many years, I had to start “doing the math” before each birthday, & now I can never remember how old I am!  I just have lost count…well, I have reached that stage w/my “post-stroke” years: after subtracting this year from my stroke year, I knew this was my 14th stroke-aversary!  Ha!

A good friend recently told me about the movie “Breathe” (a movie based on the true story of Robin Cavendish who, at 28 yrs. old — I was 30—was paralyzed by polio and given just months to live — I was given 24 hours to live. Against all advice, Robin’s wife Diana brings him home from hospital(like Mark did), & he becomes a British advocate for the severely disabled—which may explain why England is SUPER accessible!)

Parts of that movie hit so close to home that if I had seen that movie years ago, it would have been a struggle to watch, but since my stroke occurred so long ago, I was able to watch it & just relate to many of the situations & conversations (only my side of the conversation was either in my head, blink spelled, or signed!) I echo his words: ‘I don’t want to just survive. I want to truly live.’  Thank u to all who make that possible…this day is for u, too!

progress after 13 years???

At 1st, I  wasn’t sure what brought this on, but I think I can now attribute it to a few things, & 1 thing is the many prayers that resulted from a recent post of my Mormon Messages video!   Horse therapy, chair yoga,  & my bike (that also do arm circles) have strengthened it, & not “ignored” it…

Here’s a post about more progress, that I started to write when our foreign exchange student, Giuli, was nearing the end of her stay, & her family came to visit:

I have always felt like my anxiety has somehow blocked my speech, & in the last month, I have been doing activities to calm my anxiety (chair yoga & guided meditation).  I don’t know for sure if this is related, or merely a coincidence, but my speech has improved DRAMATICALLY in the last month.

Giuli’s family is here, & they are really nice!  I love that even I can talk to them (sometimes I need to act out what I say, but used to be that if no one was there who knew me, I sat in awkward silence with “new people, until they returned — but not now!) J  This “taking thing” is getting exciting!  I am no longer afraid to open my front door, to talk to strangers, I am more open to the idea of attending social functions, & I am able to participate more in small group activities, like brainstorming.

& to further that progress, here’s a post I started to write after I taught a scrapbook class in my home (Jan. 18, 2018):

I taught a scrapbook class here Thursday, & it was amazing!  When I teach, I usually have someone teach with me & translate my ASL.  I thought my Sister-in-law would do that, but she was sick, so her friend, Julie–who does not sign–was asked to help me.  While Julie can’t sign, when she helped me months ago, she did REALLY well understanding my speech (& my speech has definitely improved since then), so I did not ask my husband or one of the girls to help me.   I figured that this class was a good place to try teaching “alone”, since Julie understood me so well, since it was a smaller group, since I had no tight time constraints, & since I’d teach moms, & it seems like moms can usually understand me (I assume because of experience that comes from talking to toddlers!  Ha!Ha!)  

Still, I was a bit nervous.   Seeing my other sister-in-law there gave me a “pacifier” for my anxiety (since she knows my ASL & speech), but once my brain started working, I relaxed  & I could speak, & I remembered that if anyone can’t figure out something I say, I can just open a word document & type my response.  So, as I taught, while Julie sometimes clarified my speech, she sat with everyone else (& sometimes no clarification was needed)!  So, for the 1st time in 14 years, I taught “alone”  (I spoke, I played videos, I demonstrated stuff, & occasionally I typed on my large screen TV when I could tell they didn’t understand me!)

When I emailed Julie the next day, Julie said:  “I was actually surprised at how easy it was to understand you. It reminds me a bit like speaking and understanding a foreign language…it takes a minute for the brain and ears to adjust, but with a little extra focus, the communication begins to flow with more ease” 

What do u take for granted?

My last post was not a search for sympathy (though I appreciate all comments I received)!  But I did want everyone to know that I am “normal”,  & I wanted to share how I am dealing with it.  I am actually grateful because I am finally learning something that I kept trying to earn, & had run out of ways to learn it!

However, getting myself to post has been SO hard, & over the months, I have started 6 different posts, & I want to share what I have: Here’s the 1st post…I started to write it as I was getting better (after being sick a total of 3 weeks: 1 week with the flu, then I remained congested, but since I can’t cough, it stayed in my lungs & must have  gotten infected, because once  I had antibiotics, I felt like a new person!)  I added a bit to what I started, just finishing the thought I had.  Here it is:

I always assumed that I was someone who did not take my health for granted. I know how fortunate I am for every small movement my body has, since the doctor’s prognosis was that I’d only blink my eyes. But, I realized that I take breathing for granted.  It just is always there!  So, I wondered if I am that way with other things, & I realized I am: I thought of how I was when Mark or my kids were new in my life.

 When I met Mark, there were things he did that no one had done for me before, & I Ioved that he did them!  I still love when he does those things, but I think they are more “expected” now because that is “just how Mark is.”

It is the same with my kids.  We were aware that Zach was a peacemaker in our home, but when Zach left home, we realized just how much of a peacemaker he was.    When Jessie joined our family, there was this zest  for life that came w/her, & it has become  such a constant in our life, that it will surely leave a hole & change our lives when she leaves soon (she  is  18 years old now!)  Soph has filled our home with music, & is always willing to help me.  We have 2 more years w/her, & better not take that for granted!

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!