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.

I had a brain injury, & am having a tough time coping with the outcomes. Can you offer any advice?

Since my husband wrote the 1st year on my blog, u mostly hear about the physical changes…occasionally he addresses the emotional, but u don’t really see even a portion of what it was like emotionally!

The 1st year devastated me!  I had many talents, with a bright, promising future & many hopes & dreams–& all were crushed in a few hours!  I could no longer do anything I used to do, & I was baffled at why this happened to me…I was a good girl, who had never smoked, drank, or done drugs. Why me?

The year that followed was the HARDEST year, & I don’t know if I would’ve done as well as I did it w/o my husband reminding me of my faith!  When I started to doubt what I believed, my husband pulled me through & helped me rebuild my Faith in God. That is what makes me strong. Christ will make our weaknesses strong. So, my 1st bit of advice: check out http://www.comeuntochrist.org. I am serious.  The Book of Mormon helped me enormously!  It might give u hope, strength, & new dreams too.  Can’t hurt to see if it does!

At times I felt very alone, but I soon learned that God has never left me, & actually is either “carrying me” (like the poem “Footprints in the Sand”), or is making me stronger so I can face things.  I know God loves me & I believe that I was prepared to deal with the things that I would face, so I could become the person INSIDE that God wants me to be…& I believe u were prepared for things too!  He loved us enough to give this life to us…It’s hard, but u can do it…or God wouldn’t have given u those things to deal with!

2. I’m a big journal writer, & as so happy when I could type entries again in my journal. One of my 1st entries was a list of all the reasons I wanted to die. My husband is a therapist, & I thought he’d show me some sympathy…so it came as no shock when he challenged me to list my blessings instead!  “Yeah, right,” I thought sarcastically…”What blessings???”

Several years went by.  It took a case of head lice to get me started: I was the only member of my family to not get lice, since I didn’t share chairs with my family!  When I started listing the blessings from my stroke, I listed things that seemed silly or things I had heard my husband say over the years.  Then came the “hard stuff”: take, for instance, my medical condition called PBA–how was it a blessing to not have control over my emotions? But somehow I found a reason, & whenever I get frustrated w/my PBA, I think of that reason, & I am able to deal with things better.

So, my 2nd bit of advice: Write down your list of blessings! Here’s how: Think of something you hate. Then find a reason it’s good. Not what you think a parent or God wants to hear, but what YOU really think.  You don’t have to give anyone your list–it’s private, & for you. If u choose to share it, you can, but it’s up to you when you do share it, & with whom you share it.  But do make the list, & actually write the list.

Don’t just think about it…Actually WRITE it down!  Thinking is a start, but writing it down firms it up in your mind. Just thinking it won’t do a thing! Trust me-I know! For years, I just thought about them, but a change occurred when I WROTE THEM DOWN!  One of the greatest ways I have, & continue, to deal with things is by writing down my list of blessings.  I’ve found writing helps me ponder, soften my heart, & open my mind & heart so I can hear the spirit.  It took me years to write my list, & I wish I’d done it sooner because it changed my perspective on what I faced.   Don’t put it off like I did.

3. My 3rd bit of advice: never ever think “I wish…” or “I can’t …” or ask, “Why me?” Don’t dwell on what u have lost, or what was taken away!  Instead, see what u CAN do, & what u are learning to do. Move forward.  It sucks that it happened…Now go make the best of it!

All your memories are all there, & it may hurt u to think about them.  It hurts if u think, “I used to…” So, find a new way to do what u loved…For example, I was a big dancer.  At 1st, I thought that part of my  life was over, as I can’t walk or use my left arm…but I have found ways I can “dance”, & I often attend a Father/Daughter Dance at my church, where I twirl, use my right arm, & lean my chair back in order to limbo!  Yes, if I think of how I “used to” dance, I would get very depressed, but instead I think of the present & future. 

Another example: I also was an All State singer.  It was VERY hard on me for years to hear how I now sound as I “sing”.  I am still shy, but have adjusted: I started out signing songs in “jenny-ese” (my own sign language) as I got used to my new sound, & practiced matching pitches.  My singing has improved over the years, but I definitely am not the singer I was before!  Still, I give myself a pat on the back!  & everytime u complete a small goal, & u should give yourself one, too!

Which therapy has been the most helpful to you?

I do several varieties of therapy (aqua therapy, yoga therapy, music therapy, equine/horse therapy).  All of the therapies provide something unique, & nothing is necessarily “better” or “more effective.”  Aqua therapy reduces gravity & allows me to walk if I am held right, in the water.  Yoga therapy helps me find “long lost muscles” that can be stretched, strengthened, & “retrained.” But since I have always loved horses & music, I do have my favorites:

Red Arena (horse therapy) uses the big muscle groups, & has provided the most drastic results in the shortest amount of time, & has enormously changed my day-to-day life!  After just a few months of riding, the strength in my core at least doubled what strength I had developed over 10 years of physical therapy at home!  Increased strength in my muscles has helped me to sit unassisted on many “normal” chairs, made it possible for me to participate more in family activities & travel, it has increased my independence in daily tasks around the home, & increased my enjoyment in life, in general.

The thing I have wanted to gain back the most is my speech.  Music therapy got me started, but horse therapy strengthened my diaphragm, & then music therapy is the one that does all the fine motor work & puts the muscles (that I develop in horse therapy) to work so I am able to relearn speech.  All my therapists hold conversations with me, which only strengthens my ability to speak, & helps my music therapist know what things I need to work on to help me be more clear.  All the therapies have provided something that has been essential in my progression, but horse therapy has provided additional, unexpected emotional benefits, as well.

I can’t say that everyone will have the same benefits as I do with music therapy (since I know “musical minds” are “wired” different-so those w/o a musical background may respond better to occupational therapy), but equine/horse therapy seems a bit more universal.

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!

Do you still experience double vision and how have the doctors treated it? Is there a treatment that was especially effective?

I do still experience  double vision, but it is  a lot better, & I can read smaller font–in fact, I use a mini iPad now!  (Sometimes I need a magnifying glass, though..but I am getting old!) J

 

The doctors did nothing.  They wanted to use an eye patch (like a pirate), but couldn’t promise anythhing,  & said that whatever it did, would only be temporary.  Call me  vain, but since I already had a trache, catheter, feeding tube, “boots”, & arm braces, I was  not too keen on adding another thing, unless I was  gauranteed permanent change!

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!)