Education, Humility

Being a Disabled Student: A Lesson in Humility

For the past few months, I’ve been attending school and it’s filled me with self-doubt.

Normally, you have to have your IEP (Individualized Education Program) drawn up before school starts. That’s what gets you services with the Students with Disabilities office.

In the summer, I was anxious to get started on the next step, moving forward with my life and in my stroke recovery, so I pressured the appropriate people at ACCES-VR (Adult Career and Continuing Education Services-Vocational Rehabilitation) to approve to me attend school in the Fall.

The stipulation was that I have an appointment with a psychologist to test for said IEP, as soon as possible.

The IEP tests problem solving skills, reading and auditory comprehension, ability to retain information, memory (both, short and long term), any attention deficit, etc.

What I learned about myself through it (other than the obvious speech and speed deficits, and physical ailments) is that my visual memory is on point but my auditory memory is shot. For example, sometimes, I don’t remember key points to conversations or lectures. If I’m distracted, forget about it. That’s part of why, everything takes way longer to sink into my thick skull.

I went into the Fall 2015 semester knowing computer science was going to be a challenge, totally outside of my comfort zone, and without proper services in place.

I worked my ass off at school, anyway, and “failed” miserably with 0.000 in computer science.

Someone, who works at the college level, explained that the 0.0 GPA reflects that the course taken in that given semester was “failed.”

However, this “F” can be replaced if the student chooses to retake the course.

Now, I know more about what limits are, based on what’s happened within the past few months with school, as well as the results of the tests concerning the IEP.

With services in place with the Students with Disabilities office, in the future, I’ll get more time on tests (because of my slow reading, writing, and comprehension) and I’ll have option of having tests split (because of impending brain fatigue), etc.

That should help tremendously in coming endeavors.

Needless to say, this has all been very humbling.

But, now, I have a plan!

You see, computer science is a prerequisite for Web Design, which is was I’m interested in (besides tattooing, https://mariahrosesramblings.wordpress.com/2014/11/30/identity/, Identity, Nov. 30th, 2014.).

When I had my last meeting with my ACCES-VR councilor, we discussed the results of my IEP.

We decided that I don’t really need another degree (I, already, have 3; see Identity, again), but a few classes.

My plan is: In the Spring 2016 semester, I’m retaking Commercial Illustration (initially taken 10 years ago, or so) to give my brain a break and brush up on Photoshop and hone my left-handed skills (the stroke affected my dominant right side).

I’ll, then, spend the summer reviewing computer science, making sure I grasp the material, so I’m ready for to retake the class in the Fall.

With any luck, I’ll be free to take Web Design in the Spring of 2017.

For other “Students with Disabilities,” I’m sharing my experience with you because I hope you’ll see that people are willing to work with you, if you put in the effort. Communicate with the people in your corner and if you’re not sure where to start, ask a doctor, councilor, or your service coordinator. Someone’s bound to know SOMETHING.

 

“This above all: to thine own self be true.” (Polonius, http://shakespeare.mit.edu/hamlet/hamlet.1.3.html, Act 1, Scene 3 of Hamlet. William Shakespeare.)

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Sorry

An Apology . . .

Parental Advisory: Crude Language

I don’t know, exactly, when I lost my innocence. I think it was a gradual process.

The older I get, the more jaded and guarded I become.

When I had the stroke, I was completely lost. I’m still lost but, now, I’m as grounded as I’ve ever been.

As part of services set in place through the Traumatic Brain Injury Waiver, I received a psychological evaluation. What that accomplishes is pinpointing what deficits I have that may affect school or work and what my needs would be, according to the psychologist’s findings.

As part of the evaluation, he had me fill out a personality assessment questionnaire.

Upon analyzing my answers, he said that they raise a lot of questions, one of which was, ”What’s the deal with you and relationships?”

I wanted to say, “Well, that’s a loaded question, Doctor.”

I’m in transition. I don’t know what I’m doing and I feel like an asshole but I can’t give any more to anyone than I already do and it’s not fair and I’m sorry.

I’m fucked up; more fucked up than I let on. It may seem like I’m an open book but I have a lot of layers. You only see what I allow you to see. I have secrets that I don’t want to talk about yet; secrets that lend to who I am but I’m not ready to share. I’m comfortable with my guard up for now.

What I mean is, I don’t know my new self so I’m doing my best but I don’t want to let anyone new in, at this time, and I’m trying to right past wrongs.

Getting to know me takes effort because I’m never satisfied and always evolving.

I am, by no means, trying to make excuses. I’m just trying to explain so the people I inadvertently hurt, hopefully, will not be as pained.

I don’t want to hurt anybody but I want to be ALL IN with people as passionate as I am. The old me just wanted to be loved. Now, I want to be loved and to love myself.

I didn’t think that was possible. I thought, if I showed other people love, it would replace that empty feeling inside of me. Their happiness would make me feel whole. Now, I’m trying “. . . to find what will make me content in the moment, while continuing moving forward, especially in recovery. I’m trying to find self-worth.” (https://mariahrosesramblings.wordpress.com/2015/06/03/redefinition/, Redefinition, June 3rd, 2015.)

It’s a lot of work. I’m focusing on myself so I get lonely but it’s for the best.

Relationships mean more now, whether they be platonic or otherwise. If I choose you to be a part of my pack, I want it to be for life.

It’s a painful process. I’ve lost a lot of people throughout it; people I thought were friends lose patience or no longer believe I have anything to offer. Sometimes, would-be friends, don’t realize what they’re getting into. I try to explain from the get-go but I think I fall short in articulation. It sucks but oh well.

The way I see it, tattooing is my passion and I haven’t been able to do it so I’ve picked apart what I love about it. I love interacting on an intimate level with clients. I love getting to know people. I love picking apart people’s visions and being able to bring them to fruition. I love being a part of other people’s healing processes.

I’ve spent a lot my recovery trying to mimic those feelings. Sometimes, I come close to those same sensations. Just trying makes me feel like I’m doing something positive and not just rolling over.

Again, that’s all I can do for now and for that, I am truly sorry that I can’t do more.

Thank you to those who have been patient with me. It means the world to me and I’ll make it up to you someday.

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Dorsiflexion, Foot Drop, Physical Therapy

“Toes Up”

Saebo, Inc. (www.saebo.com) asked me to write about my experience with foot drop. I want to share the first draft (below). You better believe, I’ll make it known when the final is available . . .

“Foot drop . . . is a general term for difficulty lifting the front part of the foot. If you have foot drop, you may drag the front of your foot on the ground when you walk.” (The Mayo Clinic Staff, http://www.mayoclinic.org/diseases-conditions/foot-drop/basics/definition/con-20032918, November 27, 2014.)

Foot drop is a common occurrence among stroke survivors. As I am not a medical provider, I’ll share my experience with foot drop in hopes of educating and motivating others to persevere through their own recovery.

In October 2013, I survived a brain bleed in my left frontal lobe. Split down the center of my body, my brain no longer acknowledged my right side as a result of my hemorrhagic stroke. After brain surgery (a craniotomy), through occupational and physical therapy, my right side started “waking up.” It’s been up to me to make my right appendages, limbs, joints, muscles, etc. continue to make progress, even, a year and a half later through strength training and repetition.

From what I understand, my foot drop was neurological and combined with muscular atrophy.

I stayed at St. Mary’s (now Golisano Restorative Neurology & Rehabilitation Center), through Unity, for a month for intensive speech, occupational, and physical therapy, while being monitored by nurses, doctors, and therapists.

Then, I went to Unity Rehabilitation & Neurology at Ridgeway for outpatient therapy.

Okay. So, what I’m going to share is my experience through therapy. Professionals showed me a thing or two.

Remember: Brain injuries are like snowflakes. What works for one, may not work for another. We all have our ailments and we heal at different paces. Just be safe. If something I write strikes you but you’re not sure about how to proceed or your ability, ask. Ask a physical therapist, your neurologist, your rehab doctor, even your primary care physician. If you’re sure who to ask, don’t fret because people are out there to help us. It just may require a little detective work. Ask a caregiver or your service coordinator and be safe.

Here I go:

When confronting this subject, I’m reminded of the song growing up that says, “The foot bone connected to the ankle bone, ankle bone connected to the leg bone, leg bone connected to the knee bone, knee bone connected to the thigh bone, thigh bone connected to the hip bone, . . .” etc. (The Sing-Along Kids, “Dem Bones,” https://www.youtube.com/watch?v=cLi55MV04a8, April 15, 2014.) The reason is because all the parts in our bodies are “designed” to work together. It’s about coordination, as well as strength; not only bones, but muscles, tendons, nerves, etc., as well. When re-learning tasks that used to be second nature, you have you break things down; gross motor function to fine motor function.

At St. Mary’s, I wore a cushy foot brace at night to coerce my foot into to healing straight. Remember: at this time I couldn’t feel my right side so my right foot, if left unattended and relaxed, would fall to the right when I was laying down.

night foot brace

So, Number One: Use coercion whenever possible.

Once I could stand my own, my physical therapists worked on me walking with assistance.

One word: dorsiflexion. Dorsiflexion is the act of “turning of the foot or the toes upward.” (http://medical-dictionary.thefreedictionary.com/dorsiflexion) In other words, dorsiflexion is the opposite of foot drop.

At first, my physical therapists used an ace bandage to (again) coerce my foot into “turning upward” when I attempted to walk (with a cane and supervision). This way, I could completely ignore my foot drop because the ace bandage made it a nonissue.

When I was being prepped for release from St. Mary’s, my leg was cast for an AFO (Ankle Foot Orthosis) brace. Its purpose would be to mimic dorsiflexion. Mine worked with a spring that coordinated with my movement.

AFO

Number Two: There are devices out there to help with combating foot drop. Be careful you don’t become unnecessarily dependent on said, “devices,” but if you ultimately NEED them indefinitely, it’s okay (some ailments are permanent).

Again, Number Three: Ask a professional. For instance, I had a Bioness consultation through physical therapy at Unity. Bioness uses electrical stimulation of nerves and muscles to assist in dorsiflexion. (www.bioness.com) The problem with that for me, was financially related. If money wasn’t an object, there wouldn’t be any question of whether to proceed with Bioness products.

By the time I started outpatient therapy, my brain was acknowledging my right side, somewhat. The goal of physical therapy (as well as occupational therapy) at that point was, essentially, awareness. What does flexing my ankle FEEL like? Where am I in relation to obstacles? What does it FEEL like when my foot hits the ground?

Number Four: Always take into account sensation. Be aware. If something causes you pain, something’s not right. Don’t panic. Just take note and ask someone about it.

Number Five: Listen. Do you hear your foot dragging? Are you flat-footed when your foot lands while walking (sounds like stomping)?

The ideal thing is to be able to perform dorsiflexion (the opposite of foot drop) on one’s own, which sounds like you’re light on your feet.

My physical therapist’s voice still rings through my head, nearly a year later, saying, “Toes up,” over and over and over . . . From form with exercising to walking, both free and on a treadmill . . . It’s about conditioning; saying it over and over till it becomes second nature, while strengthening and (hopefully) coordinating muscles.

Number Six: “Toes up.”

Number Seven: Exercise. I was given ankle and hip band exercises to work on strength, coordination, and balance. Again, working on form and being aware while you exercise will help you overall, especially with combatting foot drop. It feels good to multitask, even if you don’t realize you’re doing it. Second nature, my friends.

band exercises pic

Number Eight: When in doubt, exercise some more. If you’re watching TV or going for a long car ride, there’s always SOMETHING you could be doing; even if it’s having your foot planted and your toes up for 5 or 10 second intervals. Nothing is trivial. Everything counts and YOU can do it.

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Adapt, Balance, Change

Redefinition

I’ve become, quite recently, truly (in the plainest of terms) grateful for my stroke.

The reason being, it’s given me a real chance to redefine myself, and what I think is pivotal to my well-being. I have the time to actually become the person I want to be.

That is a gift. No more coveting. The world is my oyster. The sky’s the limit. Yes, because of my new-found, so-called “handicaps,” I’m supposedly limited to what I “can do.” But, not really. I have the mental capacity and resources to navigate around obstacles. It takes longer, but what are we in a hurry for anyway? Think about it.

When I had that significant change at the blink of an eye, I spent the following year, working my ass off, trying to regain what I’d “lost;” hoping everything would be as it were. I wanted my life back.

Once that year went by in my stroke recovery, I was devastated. I thought I’d be so much further than I was. I went through the stages of grief, mourning my past-self. I was in a very dark place, feeling very disheartened. After months of debilitating depression, I finally came terms with how different my life had become and will always be. I tried and am trying, to find what will makes me content in the moment, while continuing moving forward, especially in recovery. I’m trying to find self-worth.

With being labeled as disabled, I believed for a time, that I no longer had anything to offer anyone. Pre-stroke, I used my trade (tattooing) to show people I cared, to make money, and to travel. I gave newlyweds, birthday girls/guys, etc., tattoos as gifts. I made trades for things I wanted/needed. I could afford to visit peers/friends or offer rides places because I was always working.

Since the stroke, I’ve had to rethink my Love Languages (see www.mariahrosesramblings.wordpress.com, Support and Forgiveness, January 23rd, 2015.). What makes me a “good friend?” What am I physically, emotionally, or spiritually able to do now to show people that I care?

I have no money. I can’t, legitimately, drive. I can’t tattoo.

What CAN I do?!

I’m so grateful for the support I’ve received. Without it, I couldn’t have survived the first year of recovery. Not only did people visit me, but there were numerous benefits on my behalf. There was a place, online, where people could donate. All this started happening before I could even begin to fathom what was going on. No joke, in October 2013, I was out-of-it for nearly 3 weeks, but, without knowing it, I was being taken care of. Words cannot describe how much that means to me. With that support I was able to get through that first year financially and emotionally. I had a roof over my head, rides wherever I needed to go, kind words and encouragement, etc.

My mother helped get services in place: Medicaid, Disability, the Traumatic Brain Injury Waiver, etc. She gave me what I needed to be able to figure out what I want. In one word: my mama gave me “SECURITY.”

Medicaid helps me maintain my health and keep my doctors and therapists in cahoots. We’re a team. I love it.

Social Security Disability Insurance gives me money every month, which I use to pay bills.

The TBI Waiver provides me with, basically, loopholes with insurance, and services through an agency of my initial choosing. That said organization, first and foremost, hooked me up with a service coordinator (SC) and a councilor. My councilor has been with me since the beginning. I got lucky with her. Unfortunately, I had to go through 4 or so service coordinators in a year, and threaten to go through another agency, in order to reach the SC I have now. But, such is life, and we’re sure making up for lost time now!

Through the TBI Waiver, my service coordinator was able to get me funding with TBI Housing. Now that I have my own apartment, I have food stamps as well. They definitely lesson the financial burden. I’m, also, going through ACCES-VR (formerly Vesid) to make myself more “employable.” Namely, they’re helping me with driving lessons and going back to school; stuff like that. I figure, even if or when I start tattooing again, I could adjust my schedule accordingly. I’m not worried about it in the least.

So, on paper, things are going quite well.

There are some hiccups in regard to my health but I’m working on those too. I have to remember that I’m NOT a typical young woman anymore. The best I can to do is to take care of myself. Believe it or not . . . the alternative . . . THAT would be selfish. When I slip up on the things I need (or need NOT) to do, not only do I suffer, but the people who care about me suffer, as well (maybe even more-so).

That mentality has changed a lot of things for me. I used to think that giving all my energy toward other people mattered. I set myself lowest on the totem pole. I put other people’s needs and happiness before my own, because I thought that if the people around me were happy, I’d be happy too. I didn’t want to make waves. I wanted everyone to “like me.” I kept silent and sweet. “If you don’t have anything nice to say, don’t say anything at all,” right? Not necessarily. I now realize, you can be pleasant without sacrificing your self-respect.

Throughout my stroke recovery, I’ve been working hard at, not only my abilities and health, but my character too. Like I typed, previously, “I have the time to actually become the person I want to be.” How cool is that?!

So, I ask myself:

1.) What DO I THINK makes a solid human being?

Integrity. “Word is bond” (Wu Tang Clan, c.1993.). I like that phrase. It embodies everything I want to accomplish. I look at it as encompassing honesty, loyalty, following a certain moral code, strength in the face of adversity, etc.

2.) What qualities do I find in people I respect and admire?

I don’t believe in accepting hand-outs. I believe in working for what you’re given. I have to keep in mind, the services I use now, are in place because I NEED them. You’re not taking advantage if you’re in need. 

I respect conviction. Even if I don’t agree, I admire people who sick to their guns but allow room for discussion; debate, even. 

I lost a lot with my stroke but it’s okay because, in turn, I grew a backbone. I learned to say, “No.” Now and again, I try to keep up with the Joneses, but more often than not, if I need to sit a round or two out, I do. I’m still working on that. 

3.) What qualities do I find in the people I truly love unconditionally?

I appreciate when people are honest, while treating me as a peer. “Don’t pee on my leg and tell me it’s raining.” (Judge Judy, 1997.) And, patronization or babying does’t do anyone, any good.

I would do anything in my power for the people I care about. That’s not a lot right now. Still, the people I love, don’t expect much but still make me feel special and held in high regard. 

4.) Would I date me?

Nah, brah. However, I’m starting to like myself and exhibiting more self-respect than ever. I’m getting there.

5.) After all is said and done, what do I think’s most important?

Integrity. Honesty. Loyalty. Strength in the face of adversity. Hard work. Conviction. Respect.

All these things matter to me, but NOT at my personal expense. Some overlap. Some contradict. But, it’s all about finding a balance. Allowing some vulnerability without victimization, pride without conceit. Finding self-love without selfishness. Knowing when to fight and when to walk away. Exhibiting discipline without obsession. Etc. Etc. Etc.

. . . : Make way for “Mariah 2.0” : . . .

Ask yourself versions of these questions and see where you end up.

Fine-tune yourself.

Above Photo by James Via

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Art, Politics, Science

Diving Head-First into That Rabbit-Hole

Art. Science. Politics . . . (cont’d from January 31st, 2015)

In diving head-first into that rabbit-hole, I’ve learned that it’s okay to play devil’s advocate. I love hearing the different sides to everything, even if I don’t agree.

I tried using an anonymous pen name to blog about more sensitive subjects. The reason being, I thought, if people didn’t know it was me (Mariah Rose), they wouldn’t be afraid to say what they were really thinking about whatever the subject was, and I, at the same time, wouldn’t feel personally attacked by those who didn’t agree with me or are negative for the sake of being negative.

I’ve always been wary of what I make public, to a fault, I think. I’m afraid of offending people, stirring up controversy, or coming off as uneducated.

Welp, I can’t worry about things like that. Sure, I don’t want to stick my foot in my mouth or be aggressive with my opinions, but in having a stroke, I lost my voice for a time. My cognition went out the window. I’m just, now, feeling comfortable with my thoughts, after a year and a half. I’ll never take that for granted, again. I still have far to go, but look at how far I’ve come!

My blog at mariahrosesramblings.wordpress.com has been geared toward my recovery and helping others realize that when they feel alone, someone, somewhere out there, is going through something similar, or, at least, can empathize. I’d like to keep it that way but, also, write about subjects that are bothering me. So, like everything I do, I thought long and hard about what pseudonym I’d use and, then, thought and slept on it some more.

My name is Mariah Rose. When choosing a pen name, I wanted to pay homage. You see, “Rose” is a family name. My mother’s name is Rosemary and I owe most of what and where I am to her. The first name of my new pseudonym will be, “Rosalie,” my great-grandmother’s (on my mother’s side) name. I have very fond memories of visiting during the summers of my early years. She was a stoic, polite, witty, well-read, independent woman. She always had her freezer stocked with Klondike bars and never ran out of after-dinner mints.

Thinking of her make me, both, nostalgic and want to dig deeper into the mystery of my heritage. She and my great-grandfather, who was a WWI veteran, raised three soldiers who fought in WWII, who all made it home. I think that’s pretty cool.

She was the first person I remember, consciously having to mourn but I have fond memories of when she died too. Yes, it was sad but she was celebrated because she was so loved. She brought people together, even in death.

For my pseudo-last name, I choose, “Knox.”

Knox is the last name of Mickey and Mallory, some the main antiheroes in one of my favorite movies, “Natural Born Killers.” I use the term “antihero” because they’re, at times, both protagonists AND antagonists. The movie is a commentary on how the media sensationalizes violence and crime. It has so many layers. Yeah, it’s violent but it goes so much deeper than that; from Oliver Stone’s directing to Quentin Tarantino’s character development to Robert Richardson’s unparalleled cinematography to Trent Reznor’s work with the soundtrack, etc., no stone (no pun intended) was left unturned. It’s deals with the inner struggle with personal demons, PTSD, corruption in the legal system, nature vs. nurture, again, etc. It was about the 90s but, I think, it’s relevant even now, 20 years later. (http://www.youtube.com/watch?v=Syyucj3Axdc, http://www.youtube.com/watch?v=ZCY1x7PI6Hk, http://www.youtube.com/watch?v=bOGVyrOLWhI)

When I post under Rosalie Knox, I’ll be posting my opinions based on my life experiences. It may stray from the positivity of “Mariah Rose’s Ramblings.” That’s why I’m making a separate blog. “. . . I consider myself (Mariah Rose) [to be], sort-of, a “public figure”; a young woman who THOUGHT she was on a righteous path (or, at least, getting there) that was cut short in the blink of an eye, making her recovery public, ensuring she’d get the support she needed, while reaching out and encouraging others in similar situations.” (www.mariahrosesramblings.wordpress.com, Art. Science. Politics., January 31st, 2015.) Posts under Rosalie Knox will NOT be an attack on anyone or their opinions. However, I may write about things that you don’t necessarily want thrust in your line of site. If you want my opinion, read what I write. If you couldn’t care less, that’s okay too. I’m giving you a choice, that’s all. I’m just imploring you to think before you decide and that you always be willing to listen to other people’s points of view. You have the ability keep evolving as circumstances change. Change is inevitable. Be flexible.

Feel free e-mail “me” at rosaliehknox@gmail.com to open up some cyber-dialogue. This will be opportunity to type privately about what I write. I’d ask you not to abuse this gesture. I WILL NOT respond to hostility and I WILL NOT give out my phone number.

Blogs will be at:

https://xdevilsxadvocate.wordpress.com

http://xdevilsxadvocate.tumblr.com

Snippets will be at:

https://twitter.com/Rosalie_KnoxDA

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Aphasia, Coping, Effects

Aphasia: Another Acquired Speech Impediment

“The Greek word, aphatos, literally means “speechlessness.” [http://dictionary.reference.com/browse/aphasia] What’s that word? That word that means you can’t think of the word that you’re thinking of? . . . Oh. Aphasia.” (http://www.rochesterwomanmag.com/rwm/what-doesnt-kill-me-makes-me-stronger/, What Doesn’t Kill Me Makes Me Stronger, June 2014.)

One of my new catch phrases, since I had my stroke, is “Damn Aphasia . . .” I use it when I, for the life of me, cannot think of a word I know that I, otherwise, use frequently.

Aphasia has, over time, become less of an issue than apraxia ever was. However, my brush with aphasia was no less than terrifying.

  1. What emotions come along with aphasia?

Fear, frustration, and taking pleasure in little victories.

2. How have you overcome these emotions?

When, I, first, had the stroke, I had trouble communicating at all. My uncle brought me a bell and my mom a white board, to the hospital. We made a game out of my one-armed charades. I’d ring the bell whenever someone guessed what I was trying to convey. I used the white board for anything I could try to work out; whether it be the first letter of a word or a picture of something that I forgot how to spell, etc. 

Again, “I’ve had to learn to be patient and use whatever resources I can to communicate.” (www.mariahrosesramblings.wordpress.com, Apraxia: Effects and Coping, March 14th, 2015.)

My phone has become my lifeline. Albert Einstein said, “I never commit to memory anything that can easily be looked up in a book.” (http://www.azquotes.com/quote/616898) Google and the thesaurus have become my, most-used, tools.

The thing about my experience with aphasia is, it’s become less worrisome over time. I’ve always prided myself in my grammar and vocabulary. Managing acquired aphasia means, “unlocking” what you already know is there. 

One of my speech therapists described it as such: think about your brain as a file cabinet. My stroke was like a hurricane that went through my brain. Some folders wound up in shambles on the floor, some remained in tact but needed to be gone through for memory refreshment purposes. Some things were just out of order. The information was still there but, with aphasia, I couldn’t tell which end was up and I couldn’t find the words.  

As time passed, I knew in my head, the gist of what I wanted to communicate, but I couldn’t comprehend how to get it out. I was trapped with my thoughts and I was so scared that it would be that way forever. My head can become a very dark place that I wouldn’t wish my worst enemy be confined to.

So, I worked my ass off, organizing and tidying up that file cabinet, finding comfort in every word I relearned, every grammar rule I recalled, putting everything back in it’s right place, little by little, till I restored enough to know I would be “okay” eventually.

Social Media has kept me, more or less, grounded and has given me an outlet and a chance to reach out, simultaneously. 

 

3. Were there any medications that helped?

No. “I take Keppra, an anti-convulsant, and in the first hour or so after I take it, it slows my motor functions down, noticeably.” (“Mariah Rose’s Ramblings,” Apraxia: Effects and Coping, March 14th, 2015.) It make me sluggish (more-so than I already am). 

4. How does this complication effect the people around you?

I count on people to be patient with me and, if I don’t want help and have the time, I, simply, signal for people to wait, and, most of the time, they do. 

When I get frustrated at not being able to think straight, I tend to snap. When I used to panic because of that trapped feeling, I’d fly off the handle to the point where I was scaring myself.

If I’m having more trouble communicating than usual, it’s become an indication that I need sustenance or sleep. Sometimes, this happens without warning so I have to decline invitations, more often than not, or sit down randomly or make pit-stops if I’m not prepared.

5. What would you personally want to change about your therapy? Were there any exercises or techniques that helped more than others?

Through speech therapy, I was able learn what tools worked for me and what things I could use outside of therapy to further my progress. I was always happy with my speech therapy because I never felt like I hit a plateau. There are always ways to improve. Some days are better than others. I cried a lot out of frustration and embarrassment but all my therapists helped me push on through. 

As I said, Google and the thesaurus are very useful for me. Reading “unlocks” with little effort. Listening to music and watching movies or TV shows that I knew like the back of my hand, pre-stroke, make me recall even more. 

Anything to test my memory seems like therapy; like going to the art gallery and reminiscing about my favorite artists and their lives and techniques, or getting nostalgic about my knick-knacks (Who gave it to me? Where did I, or they, get it? Why is it significant?)

Writing (as I have said, in previous blogs) helps build my vocabulary back up. I, often, repeat myself, which I think, is okay. It forces me to think of “new” ways to say similar things; break out that handy thesaurus. 

“Words with Friends” is great for getting those gears turning. There are many other games that help broaden abilities in similar ways, such “Taboo” or “Bananagrams.”   

“Words with Friends” and “Bananagrams” are both reminiscent of “Scrabble” (another excellent therapeutic game), while “Taboo” made me realize that, even in describing something in a roundabout way, I can till get my point across, as the object of the game is to make someone guess a word or person without using other key words. 

So, battling aphasia, for me, once I wasn’t afraid anymore, has gotten to be (Dare I say it?), somewhat, enjoyable. 

“When first had the stroke, I couldn’t read or speak. Any messages I responded to were courtesy of my mom.

“Texting came easier then talking (it still is) but I couldn’t find the words to say exactly what I wanted to say. I called it ‘inability to make abstract thought.’

“Now, I, suddenly, have diarrhea of the mouth, as it were, via text. I can only assume that my speech is to follow.

“Watch out, people! I’m on my way to becoming whole again!” (Facebook: Mariah Rose, March 15, 2014.)

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Apraxia, Coping, Effects

Apraxia: Effects and Coping

So, one good thing that came out of my stroke was my sister’s interest in pursuing a career in the medical field. She’s a senior in high school, studying nursing already. She’s doing a project on apraxia and asked me to be one of her sources.

“. . . it takes muscle coordination to talk or even swallow. Most stroke victims have to learn to swallow again because they simply forgot how. This ailment is called “apraxia.” The strength of the muscles is there but the brain can’t remember how to perform the task; which order the muscles need to move in.” (Mariah Rose, www.mariahrosesramblings.wordpress.com, Memory Lost, Memory Found, Repeat.)

Below are some questions I answered for Dana’s project.

1. What emotions come along with apraxia?

Frustration, confusion, feeling defeated, and taking pleasure in little victories.

2. How have you overcome these emotions?

I’ve had to learn to be patient and use whatever resources I can to communicate. For example, most people know by now about my speech ailments and that, if giving enough time, I’ll correct myself or ask for help if I WANT it. I’ve chosen to be open about whatever frustrates and confuses me and not try to hide, as much as it makes me want to duck and cover. 

3. Were there any medications that helped?

No. Actually, most hinder. I take Keppra, an anti-convulsant, and in the first hour or so after I take it, it slows my motor functions down, noticeably.

4. How does this complication effect the people around you?

I think, sometimes, people don’t understand me. When I’m frustrated, I get angry and embarrassed so I lash out. When I reach that state my condition is exasperated. The more angry and frustrated I become, the more I stutter and stumble over my words. I think, it’s gotten less frequent and severe over time but, a year and a half after my stroke, it’s still an issue.

5. What would you personally want to change about your therapy? Were there any exercises or techniques that helped more than others?

The therapy I received was immensely helpful. I wish I didn’t have to jump through hoops to get it. Even the TBI (traumatic brain injury) Waiver couldn’t keep me from getting discharged from all therapies (speech, occupational, and physical) before I was ready. So, what would I change about therapy? I want/wanted more. 

Therapy for apraxia has to do with regaining muscle memory. Exercises and techniques that are effective have do with repetition and breaking patterns once you get the hang of said patterns. It can be very confusing. 

With speech therapy my therapists broke down sounds that make up words for me and, then, we’d practice those sounds. I remember, sound blends (“fl-,” “sm-,” “sn-,” “bl-,” “pr-,” etc.), the “f” sound, and the hard “k” being some the toughest to grasp. Reading aloud helps a lot. If I know a word and am having trouble splitting it out, I’ll use my phone to bring it up (dictionary, notes, auto-correct, etc.). Seeing it in print, helps jog my memory on how to formulate the word.

Occupational and physical therapy are less complicated, I think. They still involve breaking down gross motor movement into fine motor movement and practice, practice, practice but, I think, no movement can compare with the complexity of the face’s and its attachments (speech: tongue, swallowing: throat, etc.). 

Stretching and maintaining range of motion in whatever way possible helps, generally, with movement. Exercises include anything involving, again, repetitive motion.

I find, if I mentally prepare and take my time with any therapeutic activities, I’m rather successful. When I get flustered everything gets worse; one step forward, two steps back. I’m learning, when that happens, still, to regroup, shake it off, and try again.    

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