Tuesday, April 14, 2015

Redefining Disability Project: Post #23

The question for today...

What would you like the general public to know about your disabilities, disability in general, or any other relevant subject?

Hmm, not to bad of a question. I'm fairly opinionated about the public reaction when faced with me.
  • In general people with disabilities do not need your pity. 
  • They may need your help from time to time though. Either offer or wait to be asked.
  • Assume nothing. You know what they say about assume.
These are two biggies with me. The "poor pitiful thing" looks just infuriates me. Yes, I may only have on working arm, one leg not braces, walk with a cane, and may talk strange, BUT I'm still capable of so much. Don't assume I can't because I'll probably surprise you.

If you open doors all the time for others, then go ahead and open it for me. If you don't- don't do it because you assume I need you to. I have been disabled by my stroke for close to three years now, I'm perfectly able to door it myself. If not, I'll ask for help.

In a nut shell that's it.

Sunday, April 12, 2015

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.

Thursday, April 9, 2015

Thursday's Tumbles and Stumbles: The Other Shoe

Well, Murphy's Law strikes again. Just when all is hopeful and sort of rosy. I knew the other shoe would drop, but I didn't know how or when. Now, I know.

Remember, how I was going to organize a car trip for my hubby? That is put on permanent hold as of the nurse's visit Monday after I relayed the events of the previous weekend.

I've seen and dealt with a lot of dying patients in the past. I should have had some forewarning that this was going to happen. Maybe it was just me in denial and not thinking about the would of/should of/ could of, but I should have. Then, the events of the weekend would not have been so disturbing to me.

I hear you. You are all wondering what I'm talking about.

My hubby piped up about noon Saturday with a, "I'm hungry. Woman, get in the kitchen and fix me something to eat." Now, I've known this man for almost thirty years and been married to him over twenty-one years, and never heard him say anything like this before. It was so out of character for him. For a second, I just stood there with my mouth hanging open.

While I was fixing his lunch, I was stewing over what he had said. Part of me was angry because it sounded something like my abusive ex would say. But overriding this was concern. What had changed? What was wrong?

The panko crusted chicken fingers were in the oven, a feta cheese chopped salad was made, and the baby vegetables with cheese sauce was cooking so I went into the living room. I started talking to him. How did he feel? What was his pain level? He had no memory of yelling at me or what he had said. He was busy wadding up a tissue and then wrapping it with tape. He had a whole plastic pencil box of these. He answered my questions just like he normally would.

Nothing was out of the ordinary in his demeanor or attitude. Maybe the outburst was a joke of some kind, I thought, but I didn't get it. Ever since we went through the fiasco with hospice about them canceling aide services back in January, he's had bugs on the brain. Every time there was a moth or fly, I had to kill it. Especially if it was on his bed. The weather has been so nice here the past couple of weeks, the windows are open and so are the doors. So naturally beetles, flies and moths come in every time I open the doors for the animals.  It's kept me hopping on bug patrol. No fleas though.

His was half of this
I served him lunch and he settled down for a nap after eating one chicken finger and a couple bites each of the salad and vegetable as usual. He didn't want to eat dinner saying he wasn't hungry. But I suggested apple cobbler and ice cream, and he agreed. If all else fails offer sweets. He took a couple of bites and was done. He played with the ice cream until it was melted and I suggested he drink it. He did. I was satisfied.

His oxygen alarm went off about three in the morning. It took thirty minutes for it to reset and turn back on. I was glad for the big tanks of spare oxygen I have on stand by. I got him switched over and back again. It happened again at ten that Sunday morning. One tank of oxygen gone with four remaining. I wasn't going to ruin anybody's weekend with a service called unless the machine died. Three more times over the weekend that blasted alarm went off.

Sunday night he decided he wanted an open faced turkey sandwich for dinner. No big deal. I had bought a canister of Stove Top dressing that I could measure portions. The same went for the mashed potatoes and gravy. Just nuke the water and stir. After I clean up the dishes I came back and sat on his bed again. We dine on his bedside table. We were talking about the kids and the grand kids, and he suddenly pops off that he's got proof that he wasn't crazy. He switched gears so fast during our conversation that I was like... huh?

He he was clutching the sheets and blanket close to his body. Of course I asked him what he was talking about. "In this box are a collection of bugs I caught in my bed."

I know something is off kilter. His eyes are unfocused and he's got a death grip on something under the covers. I actually had to pry his fingers loose from it. He issued a stern warning of, "Be careful or they'll get loose."
I disentangle the box he was holding from the bed sheets, "Honey, look. This is your pill box."
"No, no, no. That's the wrong box."
"Okay, which box is it?"
"The blue pencil box. I told you. These bugs are sneaky and escape artists. They are lime green and they are translucent."
Oh geez, I thought. All those crumpled up pieces of tissues had "bugs" in them. "Okay let me take them into the office where I can see them under the desk lamp."
"Here. You'll need this too because you can't see them without it." He handed me the large magnifying glass.

Something was definitely wrong with my husband. But to humor him, I took the box and magnifying glass, and hobbled back to the office. Dutifully, I untaped and opened each piece of paper looking on both sides of the paper. All thirty of them. I toyed with the idea of giving him the liquid Haldol (anti pyschotic) from his care pack. I would of except he knows what Haldol is used for and he'd fight me on it. He was working himself into a state while I examined the tissues. I stopped long enough to convince him to take some morphine and Ativan. It was the best I could do. I almost called the nurse on call. I was that concerned.

Instead, I finished examining the tissues and reported back to him that I found no bugs.
"They must have escaped! I told you they were tricky."
"Honey there are no bugs." I tucked him into bed. "Just relax and take deep breathes. I then took his
vital signs. His heart rate and blood pressure were up. Of course because he was upset. Then I took his pulse/O2 stats. His oxygen level was 72 out of 100. He was suffering from hypoxia (lack of oxygen to the brain). He's killing off brain cells while I was humoring him. How did I miss seeing his increased gray pallor and almost dark grey fingers. I boosted his oxygen level on his concentrator up to five liters and told him in a calm voice, " Breathe deep. In through the nose and out through the mouth. Close your eyes and focus on my voice. In and out."

The morphine, Ativan, and the boost in the oxygen finally took effect. His color was not so gray and his fingers paled. He finally drifted off to sleep. His oxygen levels rose to 80 which is normal for him now. I reduced his oxygen level back to three liters. Keeping it at five might halt his breathing altogether. I was kicking myself as a bad RN/paramedic. I glanced at the clock before I went to bed...2 AM.

Even when his nurse came by Monday, he had an "altered mental status." She suggested giving him the Haldol. I told her his issues and she told me to call whatever nurse was on duty. They would play the heavy with him. So also reminded me of respite care five days a month. I really can't do that to him because he's cognitive of his surroundings 75% for right now. But it's a bargaining chip for me in the battle over the Haldol with him if I need it.

My hubby is losing his grip on reality and I'm along for the ride. Scary, isn't it? This week has been either treading lightly on egg shells or being a bull in a china shop for me. I was hoping for the luck of the Irish with his passing quietly away. I should have known, for me, it couldn't be that simple.

How has your week been?

Tuesday, April 7, 2015

Redefining Disability Project: Post #23

Time for another question.

   What would you like the general public to know about your disabilities, disability in general, or any other relevant subject?

This may be one of the shortest posts I've ever written. I had a stroke and have "bionic" replacement joints.
  • I ain't dead yet. 
  • Just because I'm disabled doesn't mean I cannot think, feel, or do.
  • Ask or wait to be asked before jumping in to help.
  • Just because I'm brain damaged and may talk funny doesn't mean I'm STUPID. My IQ is probably higher than yours.
Don't treat me as such.
Yep. That about covers it.

Until next Tuesday...