Sunday Stroke Survival: What You See...

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Ever hear, you are a product of your environment? When learning how to write, you are told show don't tell. It's basically the same thing. When you involve the senses everything in a person is touched along the neural network to the brain.

The setting of the surroundings have a positive or negative impact on the results you want to achieve. The same is true for stroke or brain injury survivors. Are you surprised?

With my youngest daughter, TBI survivor, too much stimulus would cause her to have a multifocal seizure, but if she could get to her "quiet room," a sensory deprivation closet, she could definitely reduce the effects of the seizure activity into a less violent one. We built one in our home in a walk in closet. It was padded with a sound barrier foam on the walls and ceiling, and painted black. Yes, it sounds extreme, but if you ever witnessed how bad her seizures were on her and those around her, you'd understand. She once threw off three grown men during one such attack who were trying to restrain her. She's awoken in the morning black and blue from seizures in her sleep. She actually fractured her wrist one night.

I'd read where this could happen, so we were prepared. I didn't fully understand it until I had my stroke. I would go into sensory overload if more than two people were talking to me or around me at once. My brain just couldn't hack it. I would close my eyes and fend sleep just so they would all go away. Thankfully, these effects have diminished now that the initial damage to my brain has been reached.

Now I'm looking for certain kinds of input to stimulate my brain. Just like I did when writing. Rooms need to have a light, airy feel about them. Plenty of natural light. It's not that I'm afraid of the dark, but if I had to move in total darkness, it's down right scary because I am not sure footed. I'll gravitate to rooms that are painted in yellows or blues for this very reason. When I want high energy or uplifting, it's bold, vibrant, bright colors I'm searching for. The other thing is music. Music or sounds around me play a huge role in how I am feeling. When it involves all my senses and how it impacts me is called Neural Environmental Responses.

Have you ever listened to music playing in physical therapy? It's usually upbeat and energetic because on a subconscious level you are working out. When the therapist wants you to relax during traction or  some pain relief treatment, they'll dim the lights and almost cuddle you into a relaxed position where every part of your body is supported. They will close the door so you don't hear anything other than muted voices. Plenty of times I wanted to drift off to sleep. That was the whole purpose.

To treat you they use the tool of neural environmental enrichment to elicit a certain response. Certain smells can have the same effect. Think of peppermint or citrus smells, did you perk up a bit? How about antiseptic, what does that smell picture in your mind? What about lavender? It's called an offactory response. Commonly used in aromatherapy. Smells trigger a response in the brain. Let's try a different tact. How about the smell of really yummy spaghetti sauce cooking. Ah ha, I heard your stomach rumbling and I'll bet your mouth is watering too.

The brain is one of the most powerful organs you have in your body. When it's damaged, signals can get crossed or overloaded.So you can see why these sensory cues are used in writing, therapy, commercial advertising, and everything in life. They have spent millions of bucks to find out how to achieve their goals of titillating a certain response from you.  Almost on a subconscious level without you even being aware of it. Shouldn't you also use this to your benefit as well? I know I do.

For example, in my office I used bold, vibrant blues, golds and reds for high energy on the walls. I put on suspenseful music when writing suspense themed fiction and more thought provoking music when writing nonfiction. There were windows on two walls to allow natural light in. In my bedroom, I covered everything in muted greens, lavenders, and blues for a more relaxed atmosphere.The sounds of running water trickling from a fountain completes the tranquil space. In my kitchen yellows walls with crisp royal blues and whites to promote a wide open, cheerful crispness. A definite welcoming and homey feel. There is usually the smell of fresh baked bread lingering in the air or an apple pie to complete the sensory impact. Yes, I studied the effects of all of this as an author conveying it all to my readers, and carried it farther into to real life surrounding myself in practice.

So are we a product of what we see, smell, hear, and taste? I think so. I am at least. How about you?

Nothing is impossible.




















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Stroke Survival Sunday: Even More on Putting Words in my Mouth

Back in April 2015, I wrote on my expressive aphasia. My goodness! Has it been that long ago? Then again January 31, 2016  and heck, even last Sunday. For someone who has aphasia, I write quite a bit about it. This will be my 78th article.  In case anybody is counting. I'm raising an eyebrow at John over at the Stroke Tattler because he always counts when he searches my blogs for articles. "Beat you to it." :oP He usually sends me a note.

Why you may wonder...because my readers keep asking questions about it. Who are these readers?

Well, stroke or brain injury survivors like me, caregivers, even a few research study type people, and speech therapy students. But I'm no expert, but I'm living through it like others like me. The only difference is I can talk about it and even sound knowledgeable. Yes, I did stay at a Holiday Inn Express...see below.

The fact is, many folks suffering with aphasia do not have my gift of gab. This stems from my background of being medically trained and an author. Although this blog and emails are about the only things I write these days. My brain just can't handle the workload involved with public speaking and creation of stories. I suppose, one day, I could compile all these blogs into a book, but honestly who would pay for something than can get for free. I write about aphasia because I can. Lord knows, I write better than I speak. That's only because of the delete key and ability to edit.


Having anomic aphasia is a royal pain, for someone like me, but it could be worse. Yes, I still struggle greatly at times trying to find the word I'm looking for but at least I can now get my point across. Even if I have to say every word I know that isn't the word I'm trying to say. A five minute conversation with me could end up being a half hour one depending on several factors like how tired I am, how long I've been talking, or whether or not I'm having a totally screwed up (neurological) day.

For example, my daughter and I had driven up to my friend Mel's house. It was late because we couldn't leave until she had gotten off work in the afternoon. We had both had early starts that day to boot. About half an hour away, we decided we'd stop for the night. Her GSP said the Holiday Inn Express we were looking for was on the right. There was nothing but woods. I looked over to the left where a gas station was and saw a small Holiday Inn Express sign. What I wanted to say and what my brain told my mouth to say was "there it is." What came out was something totally alien. Gibberish. It wasn't even a known language. All I could do was hit her arm and point while she looked at me trying to figure out what I was saying. Needless to say, she missed the turn and had to turn around.

It was another fifteen minutes of trial and error to get words that ANYBODY understood to come out of my mouth. I had to sit down and be quiet. I sipped on a soda while my daughter took my credit card and checked us in.

By the time we got to our room, I could talk again in single words that she understood. This happened three years after I began talking again. It will happen still today. It's anomic aphasia because of my stroke. I'll often use a sort of sign language now with my functioning hand sort of like a one-handed Italian will. Most times, thankful, I can speak just like most folks. Other than a few stumbles with a handful of words, I do just fine. But it's with great effort and forethought.


Speaking now is like preparing for a big public speaking gig except it's for every conversation I have with anybody. If I'm at a group function and want to ask a question, I have to prep myself to ask it. If I'm answering a question like, "Where are you moving to?" I have to first visualize where I'm moving to, remember the name of the town, and/or where it is. Then I have to remember how to pronounce it, form my mouth to pronounce it, and then breath just right to form the words. Yes, everyone has got to do this too to speak. It just takes time for me to do it. Most times it will come out in a couple words at a time. "Homestead. North Georgia. Mountains. Cornelia." The usual question after that is "where is that?" So I'll begin again. "By Helen. Hour north of Atlanta."

So you can see why typing on the computer is easier and faster. I got an extreme compliment from a man talking with me on the phone last week. He said, "I spoke fine and he would have never known that I'd had a stroke." It was just a case of everything working right when I was talking to him. I also used simple words and short sentences. That is rare for me right now, but I continue to work on it.

The key is DO NOT settle. Keep working at speaking. If it comes out wrong or delayed...so what. At least you are trying. I don't have Montezuma's Revenge of the mouth. I say what needs to be said and make myself understood. I do miss the general conversations about not much like I used to have with my husband, but that doesn't stop me from interacting with others everyday.  I'll keep on trying to talk normally again and the only way I can do that is by practicing. You know the old adage, "If you don't use it, you'll lose it?" The same thing goes for anomic aphasia. You may have to say ten words describing a banana, but eventually you'll remember what the word is, or whomever you are talking to will know.

Nothing is impossible.

Sunday Stroke Survival: Argh! Said The Pirate!

It's always been my way to make even the most tedious things fun or funny. I mean if you can't have fun it's just hard work or just down right b-o-r-i-n-g. At other times, it has staved off fear or discomfort like with my cancer treatments. I lost all my hair, so I wore absolutely wonderful silk scarves and humongous earrings. This was my gypsy fortune teller garb. Yes, I even drew on mysterious eyebrows with a pencil and supplemented my eyelashes with falsies. It kept everyone guessing plus it kept my exterior point of view active. At the time, I was foretelling my future. I was going to live and beat cancer.

I created rhymes for cadence for my #2 daughter's rehab stretches as a child. I've even done a few ditties for my own PT exercises. If not exactly fun, it gives my mind another focus. My physical therapist now knows when I hum or use a sing-songy voice, what he's doing is hurting me. It's the way I cope and get through what has to be done. When I can no longer do this when coping with the pain...it's way too much pain.

I was ever so thankful to get past the monotone speech phase of my relearning how to talk with aphasia as you can imagine. It was a double scoop of ice cream with sprinkles kind of days when little by little I got my intonations back. I still don't have all of them back, but I can get my point across. It's part of who I am and how I communicate. Whether I physically don exterior costumes or not, my attitude has always been a big part of my voice of who I am.  I can drip sarcasm with a roll of my eyes, cut someone to ribbons with insults and have them believe them as compliments until after I'm long gone, and I can give you a big part of me and you know beyond a shadow of a doubt that it's true. And, all it takes is the way I express myself with words and what you perceive on a nonverbal level. For someone with aphasia, this kind of "play acting" is important as communication skills also because the words are not always there. Anything that breaks you out of the rut and frustration of trying to communicate with others is a very useful tool.

 So is it any wonder that I would use a pirate garb complete with a parrot for speech therapy?  In the beginning, regaining my ability to speak was mostly repetition. It was seeing the word in my mind, moving my mouth into the correct positions to form the sounds, and putting enough breath behind it to actually have a sound form as I repeated what my speech therapist wanted me to. Granted, in the beginning, the words didn't come out as they should have. In fact, sometimes they still don't.

Can you guess why the pirate garb? What does a parrot do? They repeat what is heard. They have to hear it several times to get it right also. I guess, I could have taped a scratched, vinyl record to my chest, but that didn't seem as much fun. Besides, first I'd have to explain what a vinyl record was to some. Nope, no fun at all. But a pirate? "Argh! Matey, walk the plank!" That's fun. The parrot squawks, "Walk the plank. Walk the plank."

I had typed in that this was my second speech therapist, but I deleted that. My speech therapy team gets confusing when I try numbering them. My first speech therapist was just after my stroke and is again my speech therapist (so she's 1st and 4th), my second speech therapist was in the rehab hospital, and that makes the therapist I'm speaking of was my 3rd? Right? I dunno.

Priceless, was the look on my speech therapist's face when I showed up for one of my appointments with her. Silk scarf wrapped around my head, heavy hoop earrings, a patch over one eye, and a parrot pinned to my affected shoulder. The fact that she usual worked with children was beside the fact. 
I had just regained some of my shoulder movement back too. Heck, I was proud of it and milked it for all it was worth. I was even showing off. Of course, it wasn't a real parrot. It was one of my youngest daughter's TY beanie parrot. My husband had pinned the feet and tail to my vest. When I moved my shoulder up and down, the wings flapped out up and down. Yes, he (my hubby) was my greatest partner in fun, life, and my biggest cheerleader. If there was anything we could do to bring out a smile in others, he was for it.



Anyhow, the  therapist had that question if her eyes...WTH? You know the look I'm talking about. So I bounced my shoulder up and down saying "repeat, repeat." Although it came out more like "ripet, ripet" at the time. Finally, she got it. I tried the "Awck" sound for parrot speech, but it truly got garbled and lost in translation, and monotone. But hey, I should get brownie points for trying, right?

We had done the repetitive speech modules so many times I was looking for a fun way to breathe life into it. Actions and pictures speak much louder than words especially for the aphasic. You guessed it, I was bored repeating the list of words every week. I had to figure out a way to make it a fun thing to do. The shock value alone on my therapist's face helped bolster me for another couple of weeks of repetition work. After that, when I got bored and needed a jolt to continue all I had to say was "parrot" as a cue for her to change up my therapy. I wasn't really surprised to see that she found a parrot puppet to work with the kids. I'm happy to share. Especially when it helped me also.

Therefore, I can love others!

Woah! That sounded a bit self-serving, didn't it? Yeppers, it's true. I love myself. Therefore, I can love others. I help myself. Therefore, I can help others. But I do what is necessary to keep myself motivated. This is a in it for the long haul situation. That's what stroke recovery is for all but 10% of us survivors. We have to keep going if we want to get any measure of recovery. We have to depend on ourselves to keep egging us forward to achieve our success stories no matter how great or small.

Just to make myself clear. This is not to say that repetition speech training is bad. It's actually a good thing. I talk almost normal at times because of it. It may just be my Abby Normal side raising its head, but why not instill fun into the mundane. Yes, learning to speak again IS hard work, but nobody says it can't be fun also. But for me, if I can't bring therapists kicking and screaming to think outside the box, I'll do it with laughter. It does do me any harm either.

Nothing is impossible.

Grandma Wisdom

I found this in my inbox this morning and had to share it with y'all. Never thought of this analogy but this is a great one. Can you guess which one I am and which one are you or would you want to be? Read on and decide.

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Grandma Teaches Wisdom With Carrots, Coffee And Eggs

 
A young woman went to her grandmother and told her about her life and how things were so hard for her. Her dreams of buying her own land and building a homestead kept running into funding setbacks – she was devastated. She did not know how she was going to make it and wanted to give up. She was tired of fighting and struggling. It seemed as soon as one problem was solved, a new one arose.

Her grandmother took her to the kitchen. Slowly she filled three pots with water and placed each on a high fire. Soon the pots came to boil. In the first she placed carrots, in the second she placed eggs, and in the last she placed ground coffee beans. She let them sit and boil; without saying a word.

In about twenty minutes she turned off the burners. She fished the carrots out and placed them in a bowl. She pulled the eggs out and placed them in a bowl. Then she ladled the coffee out and placed it in a bowl.

Turning to her granddaughter, she asked, ‘Tell me what you see.’

‘Carrots, eggs, and coffee,’ she replied.

Her grandmother brought her closer and asked her to feel the carrots. She did and noted that they were soft. The grandmother then asked the granddaughter to take an egg and break it. After pulling off the shell, she observed the hard boiled egg.

Finally, the grandmother asked the granddaughter to sip the coffee. The granddaughter smiled as she tasted its rich aroma. The granddaughter then asked, ‘What does it mean, grandmother?’

Her grandmother explained that each of these objects had faced the same adversity: boiling water. Each reacted differently. The carrot went in strong, hard, and unrelenting. However, after being subjected to the boiling water, it softened and became weak. The egg had been fragile. Its thin outer shell had protected its liquid interior, but after sitting through the boiling water, its inside became hardened. The ground coffee beans were unique, however. After they were in the boiling water, they had changed the water.

“Which are you?” she asked her granddaughter. “When adversity knocks on your door, how do you respond? Are you a carrot, an egg or a coffee bean?

Think of this: Which am I? Am I the carrot that seems strong, but with pain and adversity? Do I wilt and become soft and lose my strength?

Am I the egg that starts with a malleable heart, but changes with the heat? Did I have a fluid spirit, but after a death, a breakup, a financial hardship or some other trial, have I become hardened and stiff? Does my shell look the same, but on the inside am I bitter and tough with a stiff spirit and hardened heart?

Or am I like the coffee bean? The bean actually changes the hot water, the very circumstance that brings the pain.. When the water gets hot, it releases the fragrance and flavor. If you are like the bean, when things are at their worst, you get better and change the situation around you. When the hour is the darkest and trials are their greatest, do you elevate yourself to another level?

How do you handle adversity? Are you a carrot, an egg or a coffee bean?

May you have enough happiness to make you sweet, enough trials to make you strong, enough sorrow to keep you human and enough hope to make you happy.
The happiest of people don’t necessarily have the best of everything; they just make the most of everything that comes along their way. The brightest future will always be based on a forgotten past; you can’t go forward in life until you let go of your past failures and heartaches.

When you were born, you were crying and everyone around you was smiling. Live your life so at the end, you’re the one who is smiling and everyone around you is crying.

May we all be like the COFFEE….Change the water!

Stroke Survival Sunday: Making the Inacessible Accessible

As a physically disabled person, safe accessibility is of paramount importance. Having clear, level walkways makes sense right? Having accessibility in the home you lived in before your stroke is another issue entirely. Not everyone can afford to buy a more accessible house. Most of us just have to make do.

I'll use my current home, the house I'm moving to and our future home as examples.

My current home- when I came home from the rehab hospital, I had a few aids that I didn't have before like a portable toilet, bath chair, a hemi walker, and a wheelchair. That's just some very basic equipment. My house was built in 1959. It was only partially accessible before we bought it. I was technically disabled by my spine injury and bionic joints prior to its purchase. I knew my limitations like a flight of steps. Yes, I could climb stairs, but at times it was a scary proposition. The idea of climbing them several times a day made it a hardship issue. So a single story house was searched for and found. The house is not without steps though. There are two small steps and a door jamb to get into the front door. There was also a six-inch step down into the back room we slated as my office. This wasn't a deal breaker at the time. Of course, only the front and back doors were 36" wide.

Jump ahead almost seventeen years. My husband's medical condition worsens to where he cannot walk and I have a stroke. Those little steps posed a problem and ramps had to be built. My lower kitchen cabinets become impossible to see and reach inside. The top shelves in my upper cabinets also become inaccessible because I have to step up on a stool to reach them. Sliding and drop down baskets had to be installed to make them usable and handicapped friendly. In fact, my house was going through an expansion/renovation at the time of my stroke was a good thing. Although most of the money saving DIY projects had to be outsourced because I was physically unable to do them. Insulation and dry wall hanging are best left to someone with good balance and two hands. Especially ceilings. :o Not that I didn't think about it.

One of our biggest problems was door widths and wheelchair access. I can't tell you how many bruised and bloody knuckles my husband and I endured before we could replace the interior doors with their 36" counterparts. I was lucky enough to have a 3 1/2 foot hallway with an end by the back bedrooms wide enough to turn around a wheelchair in.

The biggest hurdle was the necessary room. You know the room I'm talking about...the bathroom. The portable commode made easy work of raising the toilet seat to a more manageable height. A pain to clean because it's plastic. Nice arms to make getting up and down, or even help balance you while standing. The bath chair fit inside the cast iron tub because I opted for the one without the transfer bench attachment. Both of my bathrooms have the standard 1950s tub/shower, a commode, and single sink. With just enough room to turn around in. A 5x7 piece of bath carpet fits perfectly with

cut outs around the commode base and sink. The major headache was the bathroom doors...27." They would have to be enlarged which meant restudding the whole wall and changing some wiring. The gift of a walk in tub from my children for father's day was a godsend even though it also meant flipping around how all the fixtures went. Remember the concrete slab that made the house so easily accessible to the inside? A major renovation project to make it easily accessible. It's not the tub that makes the basic walk-in tubs expensive, but the installation. $10K later, I had one bathroom accessible. Sort of. A year later my plumber installed a handicapped toilet. Showers are nice but sometimes you want to kick back and relax in a hot bath. Preferably with a glass of nonalcoholic wine (for me), a good book, some semi sweet chocolate and tons of fragrant bubbles. It was worth every penny! Yes, it's a female thing.

I finally finished the journey to make my old, ranch style home handicap accessible. So what do I do?

I put it on the market and move away to a double wide trailer on a mountain side. Welcome to a whole new set of accessibility challenges. Except I know that this trailer is a stepping stone of only two years so I'm not going to put a lot of money into renovating it. I'll make do with the old shower chair and portable, bedside commode once again. Yes, we'll have to rework the kitchen a bit. But with an outdoor kitchen already set up counter high. It won't be too difficult, but access into the house is. A more "permanent" set of concrete stairs will replace the wooden rickety ones.  A ramp will be built onto the back porch. Right now, this place is an accessibility nightmare, but once inside, it's accessible with wide doorways and flat layout.

In two years, Mel and my house will look like this. Roughly... the space between the two containers will be wide enough for a kitchen and common living room with sliding door access between the two containers. All floor spaces will be flat with a ramp to the right of the porch. Of course, my private side will have a perfectly accessible, handicapped bathroom.

The layout is just a concept right now. Definitely a lot more windows for natural light. A stucco finish on the outside and you'd never know it was shipping containers to begin with. Yes, it will be off the grid too with solar power and a wood stove for heat and cooking. A gray waste water recycling system underneath the house will water the fruit and nut orchard on the back side of the house. The metal garage will stay where it is and a sister out building will be "The Warren" will house the rabbitry. Compacted gravel walkways will provide sure footing for me. The chicken coop is behind the metal garage. In front of the rabbitry will be my raised beds for planting. Ten organic planting, elevated raised beds are being built out of used pallets as I type. We negotiated a labor cost cutting barter of free meals while on the job for the construction crews for the clearing and leveling some of the land. It cut our costs by 50%.

Mel asked me where we will live once the trailer is gone and before the new house is livable last week during one of our  brain-storming sessions. My answer...The Warren, of course. I mean it will be a 12x20 climate controlled space. Rabbits don't take up that much space.

So what can one partially paralyzed, spastic, post stroke woman do? Anything she darn well wants to! More on this as we make positive progress on fulfilling our dream/goal of self sufficiency. We will be starting another website, blog and YouTube channel to document it all too. So stay tuned. Four weeks and counting down until blast off.

Nothing is impossible.