Scared Speechless

31 08 2015

The following is an account of my brief experience with Speech Apraxia which occurred six months ago.

It was about 2:30 AM on March 4th, 2015. I woke after only a few hours of sleep and after shifting around in bed, trying to get comfortable, I got up and stumbled to the bathroom. I tried to be quiet so I wouldn’t wake Joe, but the past several days had included a dystonic event brought on by catching the flu/cold germs going around, and my gait was still unsteady enough to bump into a few too many things.

I was standing in the middle of the room, when Joe decided to come make sure I was ok. His appearance in the doorway, right in front of me, and “Babe, are you ok?” startled me and I screamed. And screamed. And screamed. I could not stop screaming.

Joe picked me up and carried me back to bed. I was as stiff as a board. I knew it was Joe, but I simply could not stop screaming. When at last I did, I could not talk.

The only sound I could form was, “aaaaaaaa”. Watch this video Joe took to show my doctors. I was trying to say, “it’s ok, you didn’t try.”

We tried to communicate with hand gestures and eventually discovered I could type out what I wanted to say. Poor Joe was distraught. He felt it was all his fault for scaring me and worried that something permanent had been damaged. Bless his heart.

Twenty-four hours later I still could only produce one sound and my means of communication was my ipad. Slowly as time went by I was able to form garbled sounds resembling that of which the English language is made.

I made progress though! Soon I was able to make the beginning sounds of the words I wanted to say and later the ending sound. The middle of a word and the different syllables caused a great deal of trouble.

Here is another video of when my speech had improved.

Speaking was very difficult and trying to get people to understand what I wanted was tiring!

Alex loved to hear me try to talk and laughed and laughed. It really did sound funny.

There was a part of me that felt a bit scared and yet, there was nothing to do but keep trying and why not laugh? It’s much better than crying! Oh and it was kinda fun finding ways to flirt with my husband while my vocal cords were on vacation!

One day I sat in front of the mirror and just worked on the names of my family for practice with the sounds and syllables. E-ri-ca, roz-ma-ry, brad-lyn… the toughest names were Bruce, Aaron & Alex. Bontrager took a long time to master! This was where my experience as a first grade teacher came in handy! In all those times of teaching my students how to use their tongues, teeth and lips to correctly form the sounds of the alphabet, I never thought I’d use those same techniques to give myself speech therapy!

But slowly my speech became clearer and about two weeks after the incident, I was speaking normally again.

Why did this happen? Not exactly sure. One of my doctors feels it was a combination of my body & brain being weakened by the flu and then my brain was overstimulated by the scare. Why I lost my ability to speak? I really have no clue. It’ll be a great story to tell the grand kids though! “One time, grandpa scared, grandma so bad she couldn’t talk for 2 weeks!” (Of course it will need to be exaggerated!)

This event ushered in two more symptoms which have continued to show up whenever they feel my brain is sufficiently stimulated. One: I repeat words or phrases over and over and over. I can be repeating the same phrase for up to a minute sometimes. One thing I’ve learned is if I hold my tongue down so it can’t move for a time, the repeating will stop. And then I just better not talk for a few minutes! Two: in the same way that I repeat words, my motions can also become repetitive. For instance, I may tap Joe on the shoulder to get his attention, and my hand will just keep tapping until he takes it and holds it still. Or I may start rocking back and forth until someone stops me.

We’ve found these symptoms can be quite amusing. I say, “I’m sorry, I’m sorry, I’m sorry, I’m sorry….” Joe says, “it’s ok, you can stop saying it now.” I say, “ok, ok, ok, ok, ok, ok, ok, ok, ok, ok….” And we are both laughing till I get it stopped.

While we’re on the subject of amusing symptoms, I have also begun this thing where I randomly can’t walk forward. I may be able walk perfectly backward and even at times, sideways, but not forward. Sounds bizarre I know, but that’s the truth of it. Recently on a road trip, Joe was helping me into the car when suddenly I just started going backwards. So he turned me around and I backed into the car just fine. My cousin, Tinslie was along, it tickled her funny bone and she giggled away. =)

I was placed on an anti-seizure med called lamictal and this has helped dramatically in the number of these events and in helping to protect my brain from over-stimulation.

Joe says in the past year, life has never been boring!


This Man I Love

26 08 2015

He surprised me on my birthday with a photo shoot by my sister-in-law, Sheila Wagler, at the covered bridge where he had proposed. I was beyond excited. It was a most wonderful birthday date. He took the afternoon off. We walked around in stores like Pier One Imports, ate Wendy’s frosties, and relaxed by the bridge until Sheila arrived to do this fun photo shoot.


These past weeks he’s had to care for me. Again. Several times he had to drop what he was doing and rush home from work to find me twisted on the floor or jerking in my bed, my phone lying beside me where I’d managed to clumsily hit his number.

He wakes up in the middle of the night to massage my aching muscles or stays awake with me when the pain levels have climbed too high for me to manage on my own. When my head is all confused and muddled, he doesn’t get frustrated, but remains as gentle as ever.

Never does he complain or make me feel like a burden. Instead, he tells me he’s glad he married me, that he likes being able to take care of me. Even so, it makes me sad to watch him do the things very few young husbands have to do.

He loves me well, this man.

When we first met, I was not at all looking for a relationship. I felt that to expect someone to walk this road with me was too much to ask of anyone. Nor did I expect anyone would want to. So it came as a surprise when my dad told me Joe had met with him and asked if he could approach me about beginning a courtship.

I went through all kinds of emotions. There was amazement that I was actually attractive to someone, fear of a relationship, and anger… I guess for disrupting my life. My sisters would be glad to tell you of the time I threw a hand mirror, breaking it in my frustration. I prayed for definite leading. God didn’t give me a “no” and I’m so glad now that he didn’t!

As we began our relationship, we were both faced with warnings and skepticism.

People warned Joe about dating a sick girl. Some thought he was stupid, that I was a “second best” and he shouldn’t “settle” for me but go for a whole girl. Some thought he wouldn’t be able to handle it. And some openly admired him for being so brave and amazing, willing to love a sick girl with seizures.

Joe hated it all. He had sought advice from people whom he trusted and who knew my situation. He felt like he had taken this step with care. But he especially disliked it when people made a big deal over him and let him know they thought he was amazing. “I’m not doing this for people to admire me or think I’m this big hero!” He told me.

He wanted me for me.

And I love him for that.

Folks told me I’d better hang on to him cause not many guys would date a sick girl. 

Was I a “second” and not worth a good man’s attentions? I determined to make sure I wasn’t an object of pity for him. I wasn’t going to marry him just because I was scared of ending up single. 

Poor Joe, I made it pretty tough for him as I made sure he knew exactly what he was getting into and held back from getting too emotionally involved until I knew if he really loved me for me, and if he was truly ok with my disease.

I think he is brave, amazing, worthy of admiration and very much a hero. He gave me unconditional love, he was steady and incredibly patient, willing to give me all the time I needed. I couldn’t help but fall in love with him.

It amazes me when I think of how God orchestrated this part of our lives, sending me someone who is, in so many ways, absolutely perfect for me. Often when we are away from home, strangers will come up to me and comment on how they can tell my husband loves me and is a special man. I love that! When people notice how great he is.

Now, he is not going to appreciate this post because I’m bragging on him and it will make him uncomfortable. But I just need to let folks know, at least once, what a special guy I married.


Zonegran Aftermath

21 08 2015

We were sitting in the neuro-psychologist’s office working on symptom management when it hit. At first it was just a stiffening of my body and my head falling to the side, then I began to jerk and a twisting seizure took control.

Dr. M’s office is on the ground floor in the rehabilitation wing of the Greenville Memorial Hospital. Dr. M became concerned as the seizure progressed. She insisted on bringing in a nurse and returned with two. They checked my pulse, reminded me to breathe and watched as my body twisted backwards on the small couch.

They were concerned and very much wanted to send me over to the ER. “she needs to be evaluated!” they stressed.

But Joe very firmly said, “Nope! We aren’t doing that!”  He wanted to just give me meds and wait it out. He knew an ER visit would include unnecessary tests and drama we didn’t need. And he knew how much I dislike the ER.

Dr. M called Dr. W, my neurologist, who agreed with Joe. If things got worse she wanted us to call her and she’d meet us at the ER, but for now we were to wait it out.

And so we did.

Thirty minutes later the seizing died down and another thirty minutes passed before we were able to leave.


Between Mom’s pharmaceutical knowledge and Bruce’s tech ability, they figured out how much of what drugs were needed to “snow” me. You gotta love this family of mine!

This seizure came out of nowhere. And we felt rather blindsided. I wasn’t fighting a cold, the flu or any other such infection. I was taking my pills as ordered. Where had this come from?
I had several of the harsh twisting seizures, but the majority of my seizures have been what we are calling, “the staring seizures”. In these I will suddenly just be staring without seeing, unable to respond and if they are long enough, I may fall if standing or slowly slump over if sitting. One day I fell off the couch. =) Breathing is often an issue with these “staring seizures”.
“Your migraine pills!” Joe exclaimed one evening about two weeks later. “that’s the only thing that’s different!” And sure enough, Approximately three weeks before the seizure in Dr. M’s office, Dr. W. had decided to change my migraine medication.
The topamax was causing several problematic side effects such as tiredness, loss of coordination, tingling of the hands/feet, confusion, slowed thinking, memory problems, and speech/language problems.  But the most vexing effect was word retrieval. The word retrieval seemed to get worse by the week. I would tell Joe, “could you get me that blanket from…from….from… that thing you sit on.” meaning the couch. Or I would be giving someone directions and say, “you need to turn at the…. place where cars stop on the road and there’s that thing up top that tells you when to stop or go.” meaning a traffic light. This was what made my nuero finally decide to change.
So she switched me to zonegran and about three weeks later the fireworks began. After Joe mentioned that perhaps this could be the problem, my mom and I researched the side effects of zonegran and the effects of coming off topamax. Sure enough!  My nausea and vomiting were withdrawal effects of topamax and “increased seizures” was a side effect of zonegran.
Topamax and Zonegran are both seizure preventatives that can also be used as a migraine preventative. Dr. Raxlen said using these medications can be a tricky business. When you start working in that area of the brain it can be difficult to find the right medication because, depending on the person , the drug can be just as likely to induce a seizure as to prevent one.
I stopped taking the zonegran and the seizures have been subsiding ever since. I had been having up to three or four of the staring seizures every day. They could be anywhere from 15 seconds to a few minutes.
So now I am not on any type of migraine preventive, which I find a bit scary. I started using Olaf the Oxygen when a migraine starts and he has been helpful in lessening the pain and helping me to fall asleep so I can sleep it off.
I had been taking Lamictal as a seizure preventative and my dosage has been doubled for now, but I’m still having a bit of trouble especially when in a noisy group. The dystonia has been more active and I still have the staring spells every once in a while.
On Tuesday I went grocery shopping with my mom, sister and sis-in-law. I did pretty well, with my dystonia acting up only a little.
That night my brain decided to let me know it didn’t appreciate the big day and we had a seizure, my body twisting and curling backward. The next day I couldn’t get out of bed or I was pulling and jerking quite nicely. But it didn’t kill me and I’m glad I went! It was a fun day. We were in dire need of groceries and I even found an old suitcase to add to my collection of things vintage.

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