Sunday Stroke Survival:I Just Figured It Out, DOH!

For years, since my first stroke in 2012, I've found it hard to explain my right foot's response to touch. Whenever I or some else touches my right (affected) foot up to just above the knee something goes haywire with the response to the sensation. Unless the foot is in full spasticity mode (weight bearing), it moves away from, or behaves badly in extreme movements (think violent bouncing ball type motion) until it ultimately goes into a clonus tremor. That's with a light touch, because with a firm touch it goes into solidly spastic mode and won't move at all. My response was cockeyed. Other than that, I couldn't figure out how to describe it effectively with my aphasia.

I finally figured it out. It's called a hypersensitive response to light touching. I didn't realize that hypersensitivity could happen post stroke. I only knew of feeling nothing and have feeling was possible. Chock it up to something else up they never taught me in nursing school or find anywhere else. Just like a sudden drop in blood sugar was a sign of a stroke. Or, at least it was for me Ms Abby Normal.

Reinforcing a new relearned word.

By writing about it, it helps me reinforcing the relearned word into my memory. It's one of the "tricks" I used with my youngest daughter after her TBI. Say it three times, write a sentence about it, and use it in a sentence. Her last thing to reinforce it was to use it properly for a week three times, this could be verbally or in writing. Sometime in the next month, I'd ask her for the word giving no clues. So I do the same thing for myself when dealing with my aphasia too. Makes sense, right?

(I decided to emphasize tools that helped  me conquer my limitations due to my stroke. So from now on, it will appear like this)

Getting back to my hypersensitivity. Now, I can talk about my limitations, or responses to what's happening using correct words rather than cockeyed, goes nuts, or goes wonky. Although those words describes what's happening. I wonder if I used hypersensitive with my chiropractor eight years ago, would he have tested my knee reflex differently? Would he have rolled backed up a bit on his stool so he wouldn't have been kicked in face? Hmm, I wonder!😘I wuv u Mr. Dr. Crowley! His wife is a chiropractor in the office too. This is the way I distinguished between them.

A lot can be said for having the proper word for a symptom or expression. The other words I used in place of hypersensitive although they meant a similar thing, didn't quite mean the same thing. They weren't descriptive enough in the above case. This was especially true because the person in question was used to me being medically trained. Even though he was told that I suffered with aphasia from my stroke, the words I used, goes nuts, didn't prepare him for what was about to happen. He didn't understand aphasia-speech or thought he did.

So now I own "hypersensitive" again and can use it properly. I own it until another stroke knocks it out of me again. In the future, doctors testing my reflexes are warned. Therapist also! I feel better that I've regained a correct, more descriptive word. With one word at a time, I beat my aphasia back another notch.

Nothing is impossible.

Sunday Stroke Survival: Small Talk Socialization

With Aphasia, sometimes making small talk is challenging. Often us living post stroke folks shy away from situations that require this type of interaction. Or, we go, but say very little.It's difficult making small talk when you have to think about every word before you verbalize it.

But still, I do try, but I'm not always successful. It is easier in a structured environment when most of the talking is about a narrow topic. It might seem strange to say this when I write a blog every week and sound very convincing and learned. But writing a blog is different than speaking one on one. Yes, I can be convincing and learned in a conversation with someone else, but they need the patience of a saint to be able to listen past what I'm trying to say for me to be effective.

This is where Mel and I mesh so well. She has the experience of her speech therapy training to help me fill in the blanks. She'll ask leading questions to decipher my gibberish moments and translate them. In this respect, I'm luckier than most aphasics. I'm thankful for this blessing. It takes very few words to get my point across. When we're out in public, she serves as my go between without others being aware. We just seem to be on the same page as she chats in finishing my thoughts when I stumble in my speech.

There are a lot of times when I'm without her and have to muddle through. I was in Walmart today. It was a colder rainy day. As usual, I had to wait on a motorized shopping cart. I saw a woman riding through the exit. "Ma'am, I ...need...that... you're done." A simple enough phrase, right? Even with the pauses. The cold and wet affected my voice so it came out froggy, loud, and badly slurred. Still, I got my point across with hand gestures. The lady nodded, grabbed her cane and bags, and she gave me the cart.

Now, two or three word phrases don't pose difficulty for me. I've mastered most the common ones very well over the past six years. "Thank you" and "God bless you" being the most common for me, but others come with a price of slurred words and longer pauses come into play.

I reached the checkout when I realized that I had left my ATM card at home. I reached up and took all my items off the conveyor belt and put it back in my basket muttering to myself, "Stupid! Forgot it!" I wheeled myself to the front of the store and left the cart full of my stuff.

It was pissing rain outside as I made my way to my van. I was still belittling myself as a man walked over to me covering me with his umbrella. I started to protest that I was parked two cars down from him and I was fine. The words other than thank you came out as gibberish. The man shushed me and and said, "Let me bless you." Who was I to argue with that?

I drove home feeling thoroughly blessed. I grabbed my ATM card and headed back to the store. I was under no illusions of expecting my cart of shopping to still be there. Yet lo and behold, there it sat. Someone had been kind enough to turn it around so it faced inside the store and turned it off to preserve the battery  power. There wasn't anyone around so I said, "Thanks to you, Lord and bless that kind soul." The words didn't come out right, but Jesus speaks aphasia too.

I picked up my remaining items and headed for the checkout. I had to pick up lighters to light the wood stove with. I paid for my items. As I was leaving, an elderly man pointed at my cart. The words were a loud gibberish. I nodded and grabbed my bags and cane, and gave him a knowing cockeyed smile as I handed over the cart to him.

As I was walking to my van a young woman with a small child in tow approached. She had an umbrella. It was a huge golf type umbrella which shielded all three of us. She waited patiently as I unhooked the bags from my spastic affected arm. She waited until I was n my van. "Thank you. God bless you as much as you blessed me today," I said to her. I didn't slur or stumble once.

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.

Sunday Stroke Survival: Putting Words in my Mouth

I've mentioned here several times in the past that I have aphasia from my strokes. Actually I have a host of problems that can be linked back to my stroke but this one really bites me in the butt. Mainly because I depended on my ability to speak and write so heavily before my strokes.

I made my living as a minister which is heavy speech. As a writer, words and stringing them together creatively was paramount in importance also. Both are history for the time being.I still remain hopeful that one day I might do those things again.

After my first stroke, I couldn't speak fluently but it was better than not being able to speak at all (like just after my stroke). Conversations with me took on average of five minutes for a couple of sentences. With writing, there were blank parentheses where the appropriate word should go later when I could remember it. It is still how I write this blog today, but the number of lost words and the time it takes to find  a word is less. That's how I could write so many words in my WIP (work in progress, "Don't Get Your Panties in a Wad." I had comprehension, but I couldn't remember the correct word.

But that all changed with my second stroke. I lost a major portion of my comprehension. I can't read words off a printed page with a true comprehension the first read through. It takes about four or five times reading through anything more than a couple of sentences with comprehension. It gets sifted and shifted between my eyes and my brain, or my mouth and my brain. Eventually, comprehension does occur, but not without a major effort on my part. I stopped writing because it was too difficult to understand and get my point across in written words. Even my speech took a blow and it got set back some.

The longer I try to verbalize- the more my frustration levels rise until my brain stops working because it is overwhelmed. It's a vicious, circular, downward cycle.

One of my favorite shows on television (streaming) is Agents of S.H.I.E.L.D. Don't ask me why 'cause I dunno. I'm not even a follower of comic books. I believe the last one I read was the Archie's way back in 1969. It's just a quirky little waste time show. One of the characters suffers from oxygen deprived brain cells from a drowning incident. As a result, he has expressive aphasia. I watch as he struggles to find the correct word and the Mack character plays twenty-questions with him until he finds it. Boy, can I relate to this. I lose words all the time. It is better now because I might be able to string whole sentences together without losing a word now, but it has been challenging to get to this point.

Like the brain damaged, supporting character, Leo Fitz, I know exactly what I want to say in my brain, but it gets lost by the time it gets to my mouth. It's lost in translation. When it comes out of my mouth, if it makes it that far without pausing, I'll know I said the wrong word. Then, I'm back tracking trying to find the right word if I utter it.

It's easy to laugh it off by saying I'm brain damaged, but it isn't a humorous laugh. It's down right embarrassing and frustrating having simple, verbal conversations. Writing is different although that is challenging as well. When I first started writing  Don't Get Your Panties in a Wad after my stroke, it was full of (XXX description of a word) because I couldn't recall the word I was looking for. Added to this learning to type one handed and you had a whole lot of relearning going on. I had slight dyslexia too which compounded my efforts, but I kept writing hoping it would get better. I kept writing until my second stroke totally FUBARred my comprehension. I finally stopped writing except for a few writing exercises, answering emails, and this blog. My second stroke totally scrambled my eggs for brain in how it was wired or rewiring itself.

So how do I write this blog if I'm so messed up?

• I have a topic I want to write about in mind. That's the first line on the blank blog page.
• I list three to five items concerning the topic. That's the next thing bulleted like this.
• Then I write the point of bullet.
• Then I write a personal observation or example of what I am talking about. I always connect it personally because that's what my readers want to know.

Example of  my writing before editing

Yes, it's a basic outline used in most writing. I've never had a use for detailed outlines before my stroke, now I can't even write a blog without one. Sometimes I'm even missing words as I type and don't catch it. Next I find pictures to help me illustrate what I'm trying to say to help me. In the initial blog post there are a whole lot of misspelled words and (XXX description of word)s.

Then comes the painstaking editing where I correct the misspelling and try to fill in the (XXX)s. Filling in the (XXX)s may take days to do.  But I do it because the only way to learn or relearn to do it correctly is to keep at it. 

The same thing in speaking. I just keep talking. Yes, there are still pauses in my speech pattern. Yes, I still lose my words in mid sentence and like a lost little pup, I'm scurrying around in my brain trying to find it.  I still utter words that have nothing to do with what I'm trying to say. This is life with expressive aphasia.

As a listener, you may have to play the twenty or forty question game to understand exactly what I'm talking about, but I am still recovering and may be for the rest of my life. I may be slower with the aphasia but by no means does it reflect my intelligence. Think about that for a moment. My brain during a brief pause (now under a minute) is sorting through a hundred words or more to get my point across. How many of you normal people can say that? It takes more brain power to communicate with aphasia, but with time and reconditioning, it can be done.

Nothing is impossible with determination.

Redefining Disability Project: Post #19

http://rosebfischer.com/2014/07/01/redefining-disability-an-interactive-blogging-project/

It's Tuesday. Time again to answer another question.
In what other ways are your interpersonal relationships affected by disabilities?

It's hard to tell. I've always been a social being even post stroke. All I need to be that person again is someone willing to listen and have the patience to wait while I find the right word. But then again, I'm more or less housebound with my husband these days too.

Having aphasia due to my stroke can be very limiting. Although after almost three years, it is way more better than when I first had my stroke and lost my power of speech. Most people in passing don't realize I have a problem at all. But it's the in depth conversations that another person will realize that something is not quite right. Because the longer I talk the more distractions pop into my mind and I forget what I was talking about and there can be some pretty long pauses.

Someone asked me how I write this blog with my impaired grammar and spelling skills. My answer was, "Very slowly and a lot of time." It's true. I just keep punching the keys on my keyboard. Misspellings will have squiggly lines under them in red. Grammar has green. I'll go back and fix those first. Then I will reorganize my thoughts so it reads (even to my dyslexic mind) like I'm making my point or supporting what I am talking about. It may mean deleting or moving sentences around. I may read through a single post ten times before I publish it and still there are errors.My biggest problem while typing is word omission. These things happen when I speak too.

So of my friends who email me, thank you. For the support by readers of this blog, double thank you.

Found this on my FaceBook feed

I'm very slowly making my way back through grade school grammar and spelling. I'll get there one day back to being an author. Aphasia is no fun at all. I compare it beginning Alzheimer's a lot because you are forgetting and know you are forgetting.My brain is telling me it's wrong now so that's a start. Even when speaking, I now realize I'm saying the right or wrong word...to a point.

So it's not only my physical disabilities that hamper my interpersonal relationships but the workings between my brain and my mouth. That can be a handful for the other person to handle as well.

Sunday Stroke Survival: Being Tied Up and Gagged

Credit

Got your attention, didn't I?
No, this blog is not about some kinky sex acts like in 50 Shades of Gray nor about a break in at my home. So if you've this reached by some search engine thinking it was..."bye, bye now."

It's about having a stroke with aphasia. One of the questions I get asked most often is describe what my first mental/emotional reaction to having a stroke was. My answer...
It felt like I was tied up, gagged, and thrown into a trunk of car, very much against my will. I couldn't move half my body. I couldn't speak to where someone else human could understand me. I could not do much without someone else.

That is once, the disbelief subsided.It's like it's all a bad dream and you'll wake up soon, but you are awake. Denial or forgetful is such a wonderful state to be in, but eventually you have to face reality. I went through a stage of this before I started fighting back to regain my life.It was only a matter of 24 hours, but it seemed like an eternity.

Trying to learn how to speak again where I could be understood was an essential in my case so it got the strongest focus. I've never been one to fade into the wood work. Too many people depended on me to communicate. From nurses..."How are we feeling today?" Doctors..."Can you feel this?" My family..."What's going to happen now?" My husband who reads lips and facial expressions. Even my pets, all expected the Jo they knew to answer them.

But when you have scrambled eggs for brains due to a stroke, sometimes simple thoughts are hard to communicate. First you have to find the right word to make any sense. Form the word and make it right, and then make the correct sound come out of your mouth. This is hard work that you haven't even thought about since you learned your first word at six months old. It can be a very frustrating and exhausting task, and I even haven't strung these words into a sentence yet.

The art of speech is often taken for granted as something learned ages ago. But for a stroke survivor, it's an uphill battle. For me, I am fortunate. I recovered the basics relatively quickly. For others, they've spent a decade or more relearning the basics.

For folks with aphasia, coherent speech is a life long goal. Even for me who speaks quite well with aphasia due to stroke. For example, I was speaking to a friend at therapy. She is the significant other to my strokee buddy also going through dry needling. It was like old home week when we get a chance to talk. She also one one the leaders of our local brainReconnect stroke group. I've also known her since high school. We were talking about elevated raised bed gardens and I lost the word I was trying to say. After several attempts and pauses, I uttered a Argh! and stomped my foot. This is life with aphasia. I knew she would understand because her other half has aphasia and after seven years is finally able to utter sentences. I didn't find the word I was looking for until hours later when I was thinking about the conversation.

That brings to mind the isolation survivors with aphasia feel. My life before my stroke was active with a number of social types situations where speaking and talking to other people was a big part. Now my life centers on a very select few, mostly family, extended family, and stroke survivors. I've let fall to the wayside friends who require communication by phone or in person in favor of emails.

Don't ask me why I can communicate better this way. All I know is that I can. It's less demanding on my brain than a face-to-face. But by the same token, it's a isolation creating way of communicating. I can take my time with a response. Time to find the right words. Time to find the correct spelling. And, I can edit it if I need to. Unlike face-to-face communication that there is evident pauses while I search for words and try to put them together correctly. Like this blog.

I believe it might have something to do with the fact that I was a writer before my stroke. Seeing and finding words on a screen is easier. The letters I think that spell the words don't come out cockeyed because of the dyslexia. I hit a key and it forms right. The spelling might be off but a red line appears. With grammar, it's a green one. It's also not as frustrating or embarrassing when aphasia raises its ugly head. I don't know for sure. All I know is my brain has allowed me to converse this way. I'll take whatever way that leads to a successful outcome.

So, how have you overcome difficulties and gained success?

Nothing is impossible with determination.

Opps, I Did Again ~ Battles with Aphasia

Normally, I can warn the person listening to me that the word I'm using is not the proper word. But there have been several occasions where I slip up.

Case in point...
The hospice nurse was asking how my husband was doing on his increased morphine. They had added MS Contin to the liquid morphine for hopefully longer lasting pain control.

What was happening-
He wasn't behaving normal to me. He took exception to everything I said. He wasn't sleeping the way he should. He was restless. He had more panic attacks and his paranoia was rampant. All negative side effects and it made a three-day long nightmare! I couldn't even go to the bathroom without first answering where I was going, how long I'd be gone, and promise to leave the door open in case he needed me. That's a whole lot of seconds when I don't know I have to pee unless I shift positions and being on Lasix, a prescription water pill, when every second counts against me making it to the toilet, pulling down my britches, and sitting on the commode without peeing myself.
(I can think of the words now after it is all said and done.)

As a writer, words are my way of life and a way to earn a living. But as a stroke survivor with  aphasia, my life has taken a serious detour. From being a multi-degreed person to an imbecile in nothing flat. Maybe that's too harsh, but it sure feels that way at times.

Back to my story. I told the nurse that he was combative. She raised an eyebrow at me but marked it down on his chart, a legal document. She asked if I wanted Haldol (a heavy-duty anti psychotic drug) for him and I shook my head still not realizing my mistake. This time it wasn't until much later that I realized my mistake and poor word choice when I was reading the copy she left me.

I didn't mean "combative" which is a physical action, but not the word that described his behavior as being verbal instead. I was up to my neck with guilt. It was my fault. No wonder she raised an eyebrow at me. He might be dying and weak as a kitten, but they have sharp claws to do damage with. She was probably picturing him doing just that at my use of the word.

I refused to call the nurse back to try and straighten it out after hours. She would return in a couple days for another check-up. Besides, I don't always make sense over the telephone. It had already been a long day of aide, nurse, and recertification nurse visits, plus a session with my occupational terrorist. I was too tired to even try to make sense.

It was another day before I realized the words I was looking for was "irritable" and "argumentative." I wrote them down so as not to forget them. I was praying I could read my writing by the time the nurse got here. I kept saying the words to myself over and over again both verbally and mentally. In the meantime, I was dealing with my husband's increased agitation because he was still on the prescription. I wasn't sure whether it was the medicine or the tumor in his brain causing the problem. Either way, it was bad news.

The nurse had no sooner walked in the door, and I was apologizing and bombarding her with an explanation. She told me no worries and I saw in her notes that the change in statement was due to the wife's aphasia. After playing twenty questions, it was decided to pull him off the drug to see if his behavior changed for the better or continued. 

It was the medicine. Within twenty-four hours of being off it, my hubby was back to his semi-sweet nature self. Now if the other drug reaction to his expectorant was so easy to fix. It has gone systemic and may take a month or more for the itching all over his body to stop. He's on an antihistamine with an anti-itch drug. Another penalty choked up to his weight loss.

...And so goes the Murphey Sa-a-g-a-a. (To be continued)

Sunday Stroke Survival ~ Fitness Bit

Confession time again. I've never been physically fit. I've never been able to pass the President's physical fitness test even as a child. I've always had genetic discrepancies work against me.

I was genetically predisposed to things like asthma, arthritis, cardiac problems, and assorted other things that were not conducive for physical fitness. When it came to the roll of the dice for bad genetic combinations, I always came out on the losing end starting from birth being several months premature.

That never stopped me from trying. Does anything stop me from trying? Nope.

Over the years, I've been a weight lifter. Imagine being five feet squat in height with a partner who is 6'2" tall, lifting a patient who is twice your body weight, including the weight of the stretcher, cardiac monitor, oxygen tank, etc making it four to six times my body weight. Yeah, I was really into weight lifting.

Sprinting, I could go from seated to a 100-yard dash in under a minute. But sustained running, I would be hard pressed to run a three-minute mile. With full gear equaled to a 50-pound knapsack, it was closer to five minutes. As I have said before, I don't run for the sport of it.

Chin ups, sit ups, push ups- "fuhgeddaboudit!" (In my best Brooklyn accent). Not that I didn't do them, but max twenty-five was my limit. I just didn't bother most times. But ask me to climb a tree, or crawl through muck to get a patient or chase children, I was first in line.

So is it any wonder why I don't strive for physical fitness after my stroke? Why? I've got a bum ticker (heart sick). I still have poor lung capacity since birth. I do what I have to do and that's a lot physically. Doing exercise for the sake of exercise was not part of who I am. There's got to be a useful goal in mind other than be physically fit...like lifting patients or chasing children.

What I lack in physical fitness, I made up for brain fitness. I was the type of person who could utilize their full brain. Both left and right sides at the same time. I knew I'd never be a contender for the physical, but in the brain I could excel.

So what did I go and do? Have a stroke that damaged my brain. Now, my stroke was in the left hemisphere. Languages, math, and all sort of very useful items in daily living are centered there including control of my predominant right side. Like thinking linearly, I have a very hard time doing. Sequencing is an important factor in speaking and writing.

For example, yesterday I went for an AFO adjustment. It was 4 pm and had a day full of hospice, husband care issues, and just living. I was beyond tired. With my aphasia, the combination is a no win situation. I found I couldn't find the right words to explain what was wrong with the brace. Too much pressure on my big toe and ankle. Also the sole on my functioning side shoe had a bubble form between the applied build-up and the original sole.

All that would roll around in my debilitated brain and what came out of my mouth was, "hurt," "can't walk," "cut," and blow out." I was repeatedly hitting my brace while trying to speak. I ended up pulling my shoe, AFO and sock off, and showing the brace maker what the problem was. It was all my unfit left brain function going berserk. Luckily, he understood and fixed the problems. With aphasia, if all else fails--point. Funny thing is, I can type my words better than speaking them. That how I blog even with aphasia. A thesaurus helps too in finding proper words.

So while I'm exercising to regain my function of defunct body parts, I'm focusing on getting my mental fitness in order with online games.

To be physically fit, I don't bother and never strive for it other than get use back. I realize it's a no win task. But mental fitness and acuity, that's a goal I can work towards.

Nothing is impossible with determination.

Sunday Stroke Survival ~ Aphasia, Wouldn't Dragon Speak Work?

I don't know how many times over the past two year that someone has asked me if Dragon Naturally Speaking or some other speak instead of typing software would help me write my books. I know I'd be rich at a dime for every time I answered no. I wish it would.

Yes, as far as not having to type everything with a keystroke onto the page, it would. Typing is a challenge one handed but doable. But my difficulties with writing are more complex.

I have aphasia. The inability to transfer thoughts into words or even carry thoughts for very long. Luckily I don't have a problem with comprehension for the most part. I can write a blog because there are previous words or sentences to keep me on track. In this I'm very lucky indeed. Many can't. I'm also fortunate that I can recognize that something is not right with what I'm about to say and tell the listener. I'll say that this isn't the correct word but it's all I can recall at the time. They can easily do a substitution for the right word or play twenty questions with me to get the right word.

My problem with comprehension comes into play when I read. For example, a story with multiple characters often finds me flipping backwards to recall who a character is or what they said. It really takes the enjoyment out of reading fiction. This is where my second stroke hit me the hardest. So mostly I read subject based nonfiction. Biographies are in the same boat as fiction for me.

Getting back to speak-typing programs. With voice recognition software they will have you repeat certain phrases to get a baseline of how you speak. How I speak words in the morning, afternoon and at night sound different depending on what has gone on during the day and my level of fatigue. First thing in the morning and late at night (the usual time I write), my speech is slurred more than if I've been awake and vocalizing for a couple of hours. My mouth will form the right letters but the sound is off than my usual voice. Which has almost totally changed since my stroke.

My voice has to wake up and be exercised before I'm clearly understandable. That's a blessing of being alone in the house with my lip-reading hubby. Sound doesn't matter. Unfortunately for me, this is the same time I'm most creative. Focusing on how I'm pronouncing my words is like patting your head and rubbing your tummy at the same time. I can't do it anymore. My multitasking and juggling skills rank right down there with the average male and I used to be a master at it. No offense meant, but it is a proven fact that women can multitask better than males.

At five AM and after nine PM, the simple phrase, "I'm having a good day" sounds like "I ma hasing a goo a." But between seven AM and eight PM it's clearly understandable. This does not include the first half an hour after a nap. So you can see the difficulties with voice recognition software. Also my speech is constantly improving. How I speak now is infinitely better than even six months ago. I would constantly be upgrading the voice recognition. In fact, I'd probably be spending more of my time upgrading than actually writing. I'm still getting jumbled between the English-English pronunciations and the American-English. I guess I've reverted to my previous English language lessons.

This point was brought home today with my sister in law's visit. I haven't seen her in a year.  She exclaimed today, "You are doing so much better than the last time I saw you."

My first thought was kind of nasty..."Well what did you expect after a year of getting better?" Of course I answered considerably more cordially and thanked her. You know that look that dogs get when they twist their head to one side when they hear something strange? Well I saw her do that more than once during her 45-minute visit so it must have been something I said or how I said it.Yep, aphasia can be a real witch with a "b" in normal conversations no matter how well you think you are doing.

Now that she's gone and I can breathe again, I look back at the improvements I have made and am thankful. There's something about trying to play catch-up after a year's absence that is totally draining. I need a nap. But after this long winded blog...No, I can see no sense in getting a voice recognition software program to assist me in writing my books. I have to fix my mind first. Now if I was thinking entire scenes and dialogues within a couple seconds like I used to...maybe, but for me right now, I'll pass.

Nothing is impossible with determination.

Word Search or What a Difference a Stroke Makes

This is not a poor pitiful me post. It is what it is.

It was 3 AM when I heard a feeble cry for help come across the baby monitor this morning. I jumped out of bed and ran I rolled over, grabbed my AFO and shoes, donned my AFO and shoes, pivoted myself into an upright sitting position, stood up and hobbled to my husband in the living room. I was holding the wall for added support because my bedtime medicines of Valium, Baclofen, and Zanaflex still had its semi-potent sleepiness effect on me.

Normally this wouldn't be a problem because  I do it so much, but this morning it was killer. Last night about 11PM my husband upset his drink all over his bedside table soaking everything including his pill box. Four doses of meds gone. Poof. Up in the air like smoke. I'd just taken my bedtime medicines. I got him into a chair, clean up the mess including changing his bed and him, and got him back in bed and comfortable took up most of the lee time between taking my meds and hitting my pillow. I was an hour late because I was working on my sister's shawl pattern to place beading on it. I refilled his pill box and made sure he took his medicine before I wobbled off to bed myself.

I found my husband standing beside his bed fumbling with his bedding and bare butt mooning whoever cared to look. I asked him what was going on after installing him into the rocking chair and putting his oxygen back on.

Little Bit, the cat, had decided to sleep with her Daddy. She couldn't lay on the bed because her older sister, Patches, took up residence in the prime sleeping spot next to him. So she decided to sleep on his bedside  table across his knees. Being a cat, she will sleep anywhere she wants and gradually push stuff away making a comfortable spot. Well, this included a Coke Zero which was a half full can when he fell asleep. You can guess the rest.

After searching through a box of thirty-year old sheets, I finally found a twin sized set of sheets. Why did I search for sheets? All the twin sized sheets were soiled that I bought for his hospital bed. He was safely enshrouded in clean sheet that bear pink, blue, and aqua flowers leftover from our children's childhood. My night medicines are now down to a dull roar and it's almost time to take my morning medicines. If I go back to sleep I'd never wake up in time to take mine or give his.

I sink wearily in my office chair. My office is now located between my husband and my bedroom. I stretch the tense muscles in my neck knowing that a headache will form if I don't. I call it snap, crackle and pop but there is a term for this. I know there is but I can't remember. It's one of know that I know because I've used umpteen dozen times before. It drove me batty trying to think of it.

I make no bones about my cognitive deficit since my stroke. I have a real problem recalling data through the maze of dead tissue...otherwise known as my brain. I'm always searching for words meaning what I want to say. After thirty minutes, the word came to me ...CREPITUS! Thank you www.dictionary.com for how to spell the word from my mangled attempts.

crepitus  (ˈkrɛpɪtəs)
— n
1.     a crackling chest sound heard in pneumonia and other lung diseases
2.     the grating sound of two ends of a broken bone rubbing together 

As an author, many of us search for the perfect word to say what we mean. I was no different. Usually it meant editing a word ten times to hit the perfect word to say what I mean and other times it sprang instantaneously in my mind. Now, after a two strokes, the words just don't come that easily. Not without a pause, a half an hour, or maybe hours of searching. 

On a whole, I'm better than I was just after my stroke when every other word was a word search. Now, it's about every tenth word so I can at least talk in full sentences. So many times I have said, "This is not the right word, but..." when speaking to others and then They will tell me what the word is or understand because of the context it's used. I miss being able to do that. It's kind of a fill-in-the-blank type thing for me now. But at least I can utter more than 100 words.

It may be delusional, but that's my story and I'm sticking to it. Now that all meds are given and taken for the early morning rounds, I'm heading back to bed for a couple hours of needed sleep before it's up again in the life of an author, stroke survivor, and caregiver.

Anyhow, that's my morning so far. How's yours going?

 

Sunday Stroke Survival ~Read My Lips

 For me post stroke it was an imperative that I form words correctly even if the sound wasn't right. My husband is deaf and reads lips. It was going to be the only way we could communicate short of our own limited version of sign language.

With my stroke came aphasia. I had extreme difficulty forming and saying words. In fact I couldn't vocalize anything except for guttural sounds.

Now imagine you are having a stroke or had a stroke with a very droopy face trying to form the words, "I need help!" to a deaf spouse who reads lips. That was me almost two years ago. My mouth couldn't form the words right for him to understand. I had to call my daughters to get help. Even though my speech was badly slurred and staggered they knew something was wrong and came running to my aid.

I spent hours in my hospital bed, with the speech therapists, and a mirror forming letters before I came home. I practiced in front of that little mirror every chance I got. Granted mine was a unique situation. I had to make myself understood one way or other. In the hospital, there was one nurse who understood sign language which helped immensely. While I am well versed in signing, my husband never learned. I was thankful that I remembered how to sign for basic needs because my facial expressions were still in the relearning stage.

Still coming home and communicating with my lip reading husband wasn't easy. There was a lot of trials, errors, and repeating that went on the first month home. He had to learn my new mouth movements. Now after over eighteen months of being home, we've reached a happy medium of communicating. About 90% understandable speech.  I still have to repeat myself which gets aggravating, but at least we are working through my aphasia and his deafness.

Accents, the way people speak, the formation of words can look differently to a person who reads lips. It all depends on what you've been accustomed to. For my husband, I will test whoever is going to talk to him that day with twenty words, repeating them after me so my husband can get acclimated to the way they speak. After that it's up to them to pronounce their words so he can understand them. If he doesn't understand he will look to me and I will either a repeat or further make him understand. With the revolving door of aides and nurses with hospice, this is a challenge. I always try to be present when a new one comes in for the first couple visits. So if you think reading lips is easy, think again. By the same token when I am struggling with a word he will supply it.

For examples- Our #2 daughter barely opens her mouth when she talks. She doesn't mumble but her lips barely move. This is in part due to rheumatoid arthritis in her jaw. When she talks to him it's an extravagant speech and lip movement for her just so he can understand her. Our #3 daughter speaks in deafening tones which he catches every second word or so. I can't make her understand that it is the way her lips moves versus volume that he hears. Our #4 daughter speaks loud and fast, and is very animated.  Our #1 daughter speaks  slowly and clearly. He understands them perfectly. The 1st one because he is able to read her lips and the 4th one because of her animated speech fills in the gaps of what he doesn't catch. Interestingly enough in the picture- #2 and #3 daughters are on my left, and #1 and #4 daughters are on my right. They have all learned to get him to focus on their face when they are talking to him.

I remember my then six-month old grandson emulating me as I sat in my wheelchair in the hospital. Today he speaks loud and clear with a vocabulary of a 4-year old at 2 years old. Forming sounds with your lips is half the battle in communicating. Me, I speak well enough to make myself understood. There are lags in my sentences as I struggle to find words and think how to pronounce them, but not as much as a year ago. I'm healing and relearning to communicate each and every day. The aphasia is easing its grip on me as time passes and I realize how lucky I am. But if it had not been an imperative that I formed words for my lip reading husband who knows if I'd had recovered so fast. I'll take that blessing.

Nothing is impossible with determination.

More Stroke Happenings ~ Aphasia

I write quite often about my aphasia...difficulty speaking since my stroke. Here is a aphasia recovery  support group. What they say is so true. Patience is all we require when communicating with us. A very enlightening video. This is mostly why I prefer online conversations rather than phone or in person chats. I'm actually a very social creature.

I have a couple major pet peeves with communicating with others in person on a whole...

Talking to me as if I AM RETARDED. I am not mental retarded just recovering from a brain insult...you know, brain damaged caused by oxygen deprivation and blood being where it shouldn't. My IQ is higher than most I speak with, so there is nothing retarded about me.

My readers don't do this to me just people in face to face meetings. I just have a problem recalling all that stored knowledge when I want it and have a problem getting the thought to come out of my mouth that is proper and understandable. This is tremendously irritating! For God's sake, stop it.

Getting up in my face and speaking very loud and slow as if I was DEAF. I actually hear very well. It just takes me a few seconds to understand what you are saying and formulate a response.  Getting that close and yelling at me will accomplish two things; it is very uncomfortable because you are in my personal space, and two, it's jarring and further jumbles my thought pattern. Whatever response I was going to make flies out the window and has to be arranged again.

Most people will repeat the procedure thinking I didn't hear them compounding my problem. Did you check your breath before doing this? I'm just saying.You can also make me deaf by doing this! For God's sake, stop it.

Don't repeat yourself four or five times because you think I may not understand. If I don't understand, I will ask you to repeat. Now, this wasn't always the case, but it is now. Most people don't realize I have a language/speech problem until I open my mouth to speak.

Especially since my stroke, I'm a very attentive listener. Each time you speak, I will stop what I was doing (thinking of your reply) to listen to what you are saying. As you can imagine, this is maddening! For God's sake, stop it.

THINK!

Nothing is impossible with determination.

Sleepless Sleepiness and Other Irritants

Recently, I started waking with the "Gotta go. Gotta go. Gotta go right now!" It doesn't matter if I went before lying down. It doesn't matter if I've slept two hours or eight hours, the results are still the same. I barely or don't make it to the bathroom before warm liquid is running down my legs.

Now I do the fluid restriction before bed. I use the clock as I've mentioned in other posts, but to no avail.  At first I thought it might be a bladder infection, but the copious amount of fluids issuing from my body rejects that notion.

This morning was one of those times except I awoke at 1:30 in the morning after only four hours in bed. After putting on my AFO and shoes, rolling out of bed, and walking the twenty odd steps into the bathroom I found myself peeing into my brace and shoes. I didn't even get my panties down before catching the bulk of the flood into the toilet. This is down right irritating! No wonder I'm opting for full diapers again.

After I cleaned myself up and changed clothes I noticed the living room light on. My husband's hospital bed is in the living room. I went to investigate and found him on the floor in a heap, heaving trying to breathe without his oxygen on. As is my previous emergency training and my nature, I act first to remedy the situation and then panic afterwards. I got him to his feet. As he leaned doubled over the foot of the bed, I put his oxygen on. He kept shaking his head no. "No oxygen."

I thought he was saying that he didn't want it, but what he was trying to tell me was the
tube was kinked. I put the nasal cannula on him anyhow. Then we did the hand signal thing until I understood what the problem was.  Then I back tracked the line, found the kink and straightened it. I half carried him into bed. A miracle feat for a woman paralyzed or partially paralyzed on one side. I got him settled and he was still saying, "No oxygen."

I pulled the cannula away from his nose and I could feel it. I told him to look at my nose and focus on slowing down his breathing. "In and out" I started a cadence to slow down his gasping reflex. Then he realized, that he was getting oxygen. The panicked look left his eyes and  he drifted off to sleep again.

While I knew I should go back to sleep, I couldn't. The adrenaline let down effect had me by the throat and mind. It was like Friday when his oxygen machine alarm went off. I placed him on his rescue bottle of air and called the oxygen supply company. I don't know about other stroke survivors with aphasia issues but for me stress plays a major part in how bad I talk. When they answered the phone my voice was gone. Just trying to say my name was like pulling taffy. I had to take a couple of deep breaths just to do that. Luckily, the person who answered the phone knew about me and patiently waited for the words to come.

The what ifs that made me such a good storyteller played over and over in my mind. What if I didn't have this bladder problem and had slept all night. All of a sudden I was thankful for the mess. By the time I got settled down enough to sleep, there were other issues to be taken of...the rabbits, guinea pig, and chicken needed to be feed. The cats and dogs wanted to be fed, and let out and in. Medicines dosed out. For my hubby this means raising the head of the bed, handing him a water bottle and giving him one pill at a time (including finding the ones he drops in the folds of bed sheets), urinal or diaper change, and then lowering his head some, checking his legs for skin breaks, and making sure the humidifier on his oxygen condenser has enough water. By this time he's asleep again. The morphine does its job well.

Another hour monitoring his vital signs and I'm free for two hours. I guess I could do away with his vital checks, but old habits die hard. I toy with the idea of just drifting off to sleep but fear of not waking up in time for the next round of meds keeps me awake. I still head nod my way through the time praying he doesn't try to get up out of bed on his own again.

Don't tell me I should have had the rails up because I did. He scooted off the foot of the bed to try and get to his rescue oxygen and fix the problem with his line. The bad thing about being one handed is the bed rails. They are the type that have a knob that you have to pull out while you slide it down on both sides of the rails. One handed becomes a two part operation in increments to lower the rail to get him in his chair.

By 10AM I am able to once again lay my head on my pillow because my youngest daughter is here for a couple of hours before she has to go to work. Two hours of heavenly sleep for my sleepless sleepiness. Unconsciousness disturbed by the "Gotta go. Gotta go. Gotta go right now!" So it all begins again.

Nothing is impossible with determination.