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~ Needs vs. Wants

Have you ever noticed how your focus changes in regards to your therapy workout? Some things you do regularly just because, while other things you do with more intensity? Ever wonder why that is?

It's your focus.

Somethings are more weighted than others. In the hospital my strongest focus was on just a couple of things rather than the whole program. My priorities were on coping with one handed strategies, walking, and speech. Everything else, my attitude fell into the it-would-be-nice-to-have-it-back-but category.

It's the old priority game of NEEDS vs.WANTS or would-be-nice categorizations. Nobody likes to make the list. We want all our wants in the needs pile. So here was my decision factors.

• The therapist told me that fingers and hands were usually the last things to return after a stroke so that became a back burner issue. Not that I didn't NEED or WANT to have it back, but I realized that since it would take longer, my focus should be on the things that I could have restored quicker. That's not meaning I wouldn't still work at it.
• I didn't WANT to place my husband in a nursing home or Hospice, so I NEEDED to improve the dexterity in my left hand to function as well as my right hand previously did like drawing up and administering injections, and monitoring vital signs..
• Walking was a NEED issue. I live in an older home with smaller doors. Most will not allow access with a wheelchair. Although most of my house is level, some areas have a slight step like the marble step up into the bathrooms.
• Talking was NEED because my husband is deaf and reads lips and if I can't form the words right he won't hear me. This meant working on facial muscles to restore the droop and forming words with my lips properly.

Although my aphasia and speech is still affected by the stroke, my cognitive function was moderately impaired. As an author this came as a hard blow once I realized how severe the deficit  was when I tried to go back to my normal life once I got home from the hospital.

I had the ability to remember two out of three words, and the higher cognitive function of decision making choices, but my attention span was fleeting, my memory was full of gaps, my English spelling and grammar was simplistic at best, forming and computing complex strategies, and my ability to multi-task is gone.

While for most people this would be good enough, it isn't for me. The reason I say moderately impaired is because I'm a writer and this is a huge loss.

But getting back to focus. See, my "dyslexic-ADD" kicked in again. My focus since being home has changed. I want to write again. I NEED to publish again. It reason is simple. It's added income. I NEED to get my aphasia and speech under control for my ministry for the same reason.

I WANT and NEED to supplement our income. With ever increasing drains on our finances, I can't wait for Social Security to kick in. That's even with cutting back on essentials, drugs, doctors, and paying a mountain of bills are counted essentials.

My focus now, while the others are still important, in therapy either a hospital-based or at-home is cognitive and my arm. While I still do all the other stuff for my leg, it's now taken a back seat to rebuilding my arm and my brain functioning right. Reading aloud this blog and my other one helps work through my aphasia issues, "playing" games is therapy work and my time spent on force-use of my right arm are helping to restore pathways in my brain. These are my focus areas.

Regaining my foot drop and inverted foot not so much because it functions with the AFO most times. I say most times because the clonus is distracting, and the inversion can be painful when it's fighting with the AFO. My leg will take me where I need to go when supported. It keeps me mobile which is an essential and a NEED.

Yes, there is painful muscle spasms, spascicity, high tone, and a lot of other things that go along with my stroke, but focusing on what NEEDS to be accomplished the soonest keeps me goal orientated and somewhat successful in my rehabilitation workout. Narrowing the goals and focus allow me to achieve that success. Success is a powerful motivator.

• So separate your NEEDS from your WANTS
• Make your goals changeable to your NEEDS
• Focus on your NEEDS
• Set goals based on NEEDS that are obtainable

Recovery is as much a state of mind as an actual accomplishment.