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'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?

Redefining Disability Project: Post #23

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

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...

Sunday Stroke Survival: Dry Needling- The New Hope

It seems I can't quit talking about dry needling. It has been my greatest blessing so far this year. It has almost consumed my blog since December 2014 and I first heard about it for post stroke spasticity.  Yes, it is still considered "voodoo therapy" as my old occupational therapist calls it. There are no concrete studies to categorically prove that this works for post stroke spasticity  patients. Studies are currently being done. BUT for me it's working. That's saying a lot!

Before the dry needling, my spasticity was BAD and almost constant even with 400cc of Botox (350 units in just my arm alone). When the Botox wore off before the next series of injections, I was in horrendous pain. Try bending your wrist with finger clenched into a fist, and then cock it inward until you fingers touch your inside forearm. Now bring the whole forearm up to your chest and hold it in that position. Bet you can't do it for long.

My spastic, post stroke arm

That's how bad my muscle spasms were. Not for minutes. Not for hours. Not for days, but think weeks. To move it more than a couple of inches away from my body was near impossible not to mention painful. Imagine how much fun it was putting on a simple shirt. It brought tears to my eyes and blood from my lip to keep from screaming each and every time. Even with the Botox my wrist would only straighten to mid line (straight) with my therapist using force and my elbow bent. I've never been thankful for my Clonus, but the clonus is now back in my wrist and I'm glad to tolerate it.

This picture (below) represents my progress to date. With the therapist still doing all the work because my wrist and hand are still spastic and they are paralyzed (no voluntary movement). Keep in mind this is with the fingers stretched out to the first joint and the elbow is straight. I also have dry needling twice a week.

Blue-1st session. Red-4th session. Green-5th session

I'd call this progress! This new treatment modality is firing up motor response neurons that haven't fired in two years since the spasticity set in almost nonstop. He (the therapist) isn't really pulling hard to hold it in this position either. He is also able the do the other range of motion exercises too. The best part is I'm NOT in pain any more.

In March, my dry needling therapist started working on my inverted foot. On his measurement before the needle sticks in the trigger points, the foot was inverted 32 degrees. to give you an idea of what that looks like I pulled this image from biology-forums.com.

Credit

After ONE session and about a dozen trigger points hit, the angle of inversion was 10 degrees! Better yet, As I felt my foot drifting back into the inverted pattern, I MOVED it back straight! My foot is not paralyzed. Granted I was only able to do it twice, but it's a start. Last session was five times, so there is improvement. The muscle is strengthening and the neurons are rewiring. I continue to do the exercise program Amy suggested.There is hope that one day I will walk pseudo-normally without my AFO again. I say pseudo-normally because I do have a hip and knee replacements on my FUBAR (If you do not know this acronym look here) er, um, non-functioning leg.

Me doing the Snoopy dance!

After every session of dry needling, I'm sore and exhausted, but exhilarated at the same time. New pathways are being awakened in my brain. I'm seeing results rather than the passive (on my part) stretching for therapy. I mean for the most part it's passive on my part during these session, but I'm focusing real hard on making the limb movement while he's doing it.

These days I've added the quantifying word "when" I get this or that part back. That a big boost. It's wonderful not having your muscles saying "Go this way!" "No I want to go that way" like a couple of kids fighting over which way to go...because that's really what spasticity is. Now when my spasticity is gone, I can start recovering.

A couple helpful tips if you are considering this treatment...

• You will need a referral or prescription from your doctor if the person doing the treatment is not one.
• Call every doctor, chiropractor, pain management, rehab place in your town to find out who is certified to do this procedure. If there is more than one, shop each one and go to the one you like the best.
• Is there a therapist who is training or awaiting their certification? Offer to be their practice dummy. I know that the National Institute of Health (NIH )offered some studies but they may be complete now.
• Wear loose clothing. Easy on and easy off. You may have to change into a gown.
• Take a shower before the needling. Common sense. Even before your first appointment. Don't be surprised if the therapist wants to start needling right away.
• Designate bags of frozen peas or some such vegetable to use as cold compresses for the first 6 hours after a treatment. You are stretching muscles you haven't used in a while and the needling spots may bruise and/or swell.
• Drink plenty of fluids after your treatment. I eat before a treatment to dissipate the nausea I'm prone to.
• Medicare and some insurance companies may pay for this treatment is listed as a modality or treatment therapy. Talk to the business office. Nine times out of ten they will know how to word it for coverage.

Nothing is impossible with determination.

Thursday's Tumbles and Stumbles: The Raccoon Mask and Seeing Red

Well I really did it this time. It was an epic stumble and almost tumble if there had been more space. It could almost be categorized under the results of sleep deprivation or not walking will under the influence of medication.

Have you ever sleepily made your way into the bathroom in the middle of the night and dozed when you did your business? I think we all have at one time or other. Have you ever momentarily forgotten how you got somewhere? A brain fart moment? Has medication ever hit your system harder than you expected? Okay, now you have the set up for this week's stumble.

I awoke sitting on the commode. Did I have to pee or was I done? How did I get here? My AFO was on correctly, so I must have been awake long enough to do it. I find I had already finished the chore that I went to the bathroom for. I try to  push forward to rise and my legs don't want to cooperate. "Okay Jo, get it together.  There is a comfortable bed waiting for you. Alley Oop."
I manage to stand and both legs feel like they are made of Jello. I reach forward for the towel rack for support. The beauty of having a 5x7 bathroom. My hand misses the mark.

I pitch forward, more like stumble. The bridge of my nose smashes into the ceramic towel rack and my head pile drives into the wall behind it. Imagine cartoon stars circling my head. If I thought I was dreaming earlier, I was wide awake now, by God. I grabbed the hand towel which was conveniently catching the blood and held it to my nose. I sat back down on the toilet seat and leaned my head back. Ah, the joys of all the muscle relaxers and blood thinners I'm on.

Now the normal procedure for stopping blood flow from the nose is to put pressure near the bridge of the nose, but I wasn't touching it. It hurt too bad. I balanced the towel under my nose and reached for the cold water tap. There's one thing good about having a deep well for water. It's always cold. I put the washcloth under the tap and then wrung it out. I replaced the hand towel with the cold washcloth. I seemed to sit there forever waiting for the blood to stop, but it was more like five minutes.

Finally, the blood stopped.  I got myself cleaned up and wobbled off to bed. I awoke again a few hours later to give my husband his morphine  and went back to sleep thinking I had dreamed it all except from the pain radiating from the small goose egg on my forehead. Back into bed for a few more hours sleep as is my custom.

I awoke later to tiny paw taps and quick flicks of a rough tongue. My furry alarm clock, Lil Bit the cat, has no snooze button. She taps me with her paw and licks me until I get up. She'll wait while I don my sock and AFO always within a paw's and tongue's reach of me in case I doze off. She knows me too well. We have a regular morning routine now since my stroke.

I glanced at myself in the dresser mirror as I passed. Jerking back to stare at my reflection. I saw raccoon eyes and a bruised goose egg on the right side of my forehead. The battle trophies from the night before. Okay, so the circles around my eyes were more of a purplish-grey than black, but still a shocking sight upon waking. There was a definite knot on the bridge of my nose so I think I might have broken it. It's straight so I'm not going to worry the doctor with it. It's all tender to the touch and I'm suffering the after effects of old aged aches and pain throughout my body as I usually do after being hard on my body. The face will heal, but I wish it had improved my looks (as cute as a raccoon) instead of me looking like I'd gone a few rounds with a boxer. Or even had been able to say that I'd had a nose job instead of saying I got this from getting off the commode.

In other news...
I say this news report and saw red a week or so ago on CBS. The story was about a nasty note left on the vehicle of a handicapped person. You can find the news story here.  I've had a blog about handicapped parking before and I've even left messages for people who don't belong in them too. This was so cruel that I was seeing red after I viewed it. It never ceases to amaze me the cruelty of people. It was so disrespectful and down right mean spirited. It makes me want to throttle to writer with my cane!

How has your week been?