Sunday Stroke Survival ~ Come On and Raise Your Hand

Okay all you strokies, a question or three for you. I picked up the term strokies from Amy's site and it has kind of stuck a chord in me.

1) How many of you are at least six months out from your stroke?
I am raising my hand. Raise yours if this applies to you.

2) How many of you are still doing your OT/PT/Speech therapy routines?
I am raising my hand and waving it wildly, but I am also seeing a few hands faltering and lowering out there.  Is it yours? Shame on you. 
3) Are you fully recovered or just at a state of acceptance that this is how you will be from now on?
I'm not raising my hand to this one because I am not fully recovered and not accepting where I am, and neither should you.

I hear all you naysayers out there, "If you were five, ten, twenty years out from your stroke like I am you'd give up too." Nope, I don't think so. Here's why...

• The brain is constantly learning. Learning doesn't stop until you die. They've got this
  
  fancy word for it called neuro-plasticity. People will get smarter or stupider as time goes on and that takes brain power. To me death is the absence of learning. I am a forever student in this life.
• I'm too stubborn to give up. Yep that's right. There has never been a more mule headed person born than me and sometimes to my own detriment.
• I'm generous to a fault. I'd rather do without than anyone else. It's a point of view. It's not that I'm not worthy because I am, but more someone else's needs are greater than mine. There is always someone else who has it worse off than you and I am thankful it's not me. Is that wrong? Does that sound condescending? Maybe. I may gripe about my family because they are such a big part of my life and the turmoil they cause, but I let them cause it. There are others in this world who have family but they are not close and there are others who have no family at all. I am thankful. If I can't do then I can't do, and I can't accept that. It's that simple to me really.
• While I still have some paralysis and feeling loss from my stroke, I actually got off pretty light compared to some others. I didn't regain the use of my pre-stroke body, but I'm still able to care for myself and my husband with very little help from the outside world. That being said, I'm still not as self sufficient as I want to be. There are still a lot of things that I wish I could do again. I also believe it won't happen tomorrow and I may have to work years to achieve it.
• Anything you want is worth working for. In your job didn't you not have to go to
  
  college and learn a skill set? Okay some of you didn't go to to college but you still had to learn what was required for your job, didn't you? Didn't it take you years to learn that skill set? Therapy is the same way. It is repeating a set of skills over and over again. It doesn't matter if you fail the first time or the hundredth time. You are working towards a goal. To be whatever and be the best whatever you could be. Doesn't the same principles apply here? Each exercise you do and keep doing strengthens the pathways to repeat that action, and with time, it becomes as solid as the original ones. Yes it could take years before my light fluttering grip becomes strong enough to hold anything or do something productive with it, but it's a start. We all have to start somewhere and set an ultimate goal of what you want to accomplish.
• I am now talking about year goals instead of month or week goals. That's a change.
  
  For me, my goals for this year are to strengthen my ankle so it doesn't stay inverted and gain control of my fluttering grip so it won't take my entire body to do it.  

 If it doesn't happen in 2013, then it becomes a goal for 2014 or 2024. Goal deadlines are flexible where  therapy exercises and recovery are concerned. The important thing to consider is looking how far you've come in the year. Surely in the year you tried to accomplish a goal, other things were accomplished. Revel in that. Celebrated your achievements no matter how small. They are a step in the right direction.

Now if you are totally satisfied in being how you are for the rest of your life, there's no hope for ya. This year is already halfway over but still on my list to achieve and goal setting, but I'm still reaching for the stars but with my feet firmly planted on the ground. I'm still intent on reaching my goals. How about you? Isn't there one thing you would like to do better? Just one?

Nothing is impossible with determination.

Sunday Stroke Survival ~ Aphasia- Speech Deficits Revisited

The response from my aphasia blogs have garnered a lot of questions and responses so I thought to revisit this subject today and give you a progress report. Since I am no longer in speech therapy because of best use of my rehab visits, I started a seat-of-my-pants training schedule as you may have read about in previous posts.

In college, I learned for each hour of class time I needed to spend two hours in study time. With stroke deficits, the ratio is more like for every hour of professional time (with the therapist) spent I have to do six hours of study/ practice time. It boggles the mind doesn't it? Especially when you consider the fact that I spend six hours in professional therapy hours a week, it equates to thirty-six hours of at home practice. That's a huge chunk of time.

Is it necessary? It depends. How bad do you want to recover? For me, I want/need to recover all that I can. Do I have the stamina to continue this for the years it may take? I dunno. We'll have to see. I'm almost a year out from my stroke and have continued my therapy program adding new, fun ways to do it to keep it interesting.

James at Easter 2013

When I first struggled with forming words and creating sounds, I used my grandson. Yes, I said used because, being less than a year old, he was trying to form sounds and words also. We were in the same boat. He was learning and I was relearning. Not to mention he's cute and just loves his Oma (the German word for Grandmother). He would sit on my lap in the wheelchair mimicking me. It was fun to watch him as I did my exercises for hours on end. I'm still amazed by the attention span this baby, then a seven-month old, had.

I had to learn how to form the words right with my lips because my husband reads lips. He's deaf. The sounds wasn't necessary except for communicating with the outside world. But we have family which needs to be talked to so making myself understood was important also.

I often forget he can't hear in our conversations until he reminds me that my head was turned away. He'll say, "I can't hear you. Repeat that."

This is just one of my life's little challenges I have to overcome with aphasia. I find the more I practice the better I get. When we go to McDonalds, I'll stand at the counter and order. I remember what my speech therapist told me, "Slow, loud and clear." So I might stumble over my words and get weird looks from the cashier or waitress in a restaurant, who cares? I'm practicing and vocalizing. If I get too flustered I can always point in the menu or make the symbol for the number I'm ordering with my fingers. The point is that I'm making an effort. Not making an effort or letting someone else do the talking for me is easier, but what benefit is it to me and my recovery?

The words are coming easier now without the extremely long pauses in between. I'll still lose words and have to back track when speaking. Using inappropriate words for things- not so much as a few months ago. I'm constantly being corrected by those around me in a loving way. I can always count on my #2 and #4 daughters to correct with humor. My #4 daughter also suffers from a mild form of aphasia. In that case, it's the affected correcting the affected, and we'll poke fun at each other.

The real trick is when both of us can't remember a word. But there are usually others around to play twenty questions. Our oldest daughter will cock her hand at the wrist and hit her chest and go, "D-a-a-a-a-h!" in a totally stupid way. My husband will outstretch his arms in front of him, with palms out clapping, and barking like a seal. Either response brings laughter. Having this kind of loving support is essential to my recovering my speech.

While I have trouble speaking, I found it has been easier to find the words when I type. So increasing to amount I blog is working. At least it is getting easier as I go along. This is also my home therapy regime. I imagine my readers are tired of my constant blogs, but this I do for me. It helps with my strategy and planning deficits too. Having a plan makes it easier on my mind for focusing. This particular blog was written April 10th for example to give me time to find any errors. I read this blog aloud to my husband to practice my vocal and reading skills. It's a relearning triangle that goes full circle. It's how we learned these skills in the first place.

I noticed I have my kitty speaking voice intonations back. When that happened, I dunno. What is a kitty speaking voice? It's that cute, cuddly voice I use towards my cats and young grandchildren. Like what you would use when confronted with the kitten to the right and how would you say it? The higher pitched, sing songy voice we all have and use. So I'm not quite strictly monotone anymore. Yeah me!

I still have not managed humor or sarcasm yet, but I'm confident I'll get those back too.

The cognitive difficulties, I'll address in another post.

Nothing is impossible with determination!

Sunday Stroke Survival~ Aggravation

What do you do when you are aggravated? I've had one of those weeks this week. To start with I'm back in OT & PT again which is great. The only aggravating part is I'm being worked into a standing schedule. I'm scheduled for 30 minutes of OT and an hour of PT. I could honestly utilize my time better in reverse with an hour of OT time.

As it stands now, the OT is working my wrist, hand and fingers with some elbow. The PT is working on the shoulder, elbow, and ankle. The spasticity is way too bad on some days that the ankle won't move. I'll know before I even get to PT that the session will be a bust on those days before we get started. The ankle is already making walking in the AFO painful. The toes will stretch up towards the ceiling and curl under at the same time. The ankle is pointed down like a ballerina in toe shoes except it rolls inward and locks into position.  Try putting compression socks over that configuration let alone putting your foot and leg into a rigid splint.

Stroke recovery is one step forward and two back. I'm beginning to think of this as the stroke two step dance movement. This blog is going to be like that today. Back and forth between good and bad.

I found when going through the hand grip test of the evaluation...wait for it...I felt my hand give a trembling movement to squeeze the therapist's hand. Better yet, she felt it to! After almost ten months I can focus really hard and get a little response in my hand. But even this small amount of movement takes tremendous effort. I'm hopeful.

Now getting back to aggravation. It used to be yelling, screaming, and punching a pillow was my way of dealing with aggravating things. For the time being, I can't do any of those things. Well I could punch a pillow one handed, but that's beside the point. Now, it's water works. Less than a year ago, weepy would have never happened or be used to describe me. It does now.

I try to pray most aggravating things away, or breathe deeply, and for the most part it still works unless the aggravation comes to quickly and are compounded like body blows to a prize fighter. Such was the case last Thursday.

It started out as a normal sunny day. Not too hot or too cold. After watching a glorious sunrise, and doing my usual morning routine, I reminded my husband I had therapy at 2 PM. He acknowledged with a nod and repeated 2 PM. We went on with our separate morning routines. Around 11 AM he asked if I would like Chinese for lunch. We'd leave around 12:30. At noon, I remind him about our lunch date and prodded him gently to get ready (sock, shoes, primp his hair). At 12:30 he decides to get up, goes to the bathroom and begins to get ready.

By 1:00 we are in the restaurant with our drinks in front of us and food ordered, and then my phone rings. It's our youngest daughter. I explain we are at a restaurant having lunch. She told me it wasn't an emergency and she'd call me later.  I figured if we hurried, I could still make my therapy appointment.

At 1:45, we finished eating and in walks our youngest daughter with toddler in tow. I explain that I have a therapy session that if I don't go now I'm going to be late. I might mention this daughter lives an hour's drive from us so we maybe see her twice a month. I hated to do it, but my therapy is important to me and a priority.

We pass the toddler back and forth for a quick cuddle and kiss from the grandparents, and we were out the door. When he started the car my husband noticed the idiot warning light for fuel was lit. No problem, I've had this happen before and know it has only hit the reserve we can still just make my appointment. It was well within the reserves range for the round trip.

No, my husband panics. We are going to run out of gas on the way and his oxygen tank is almost empty. To save time, I was going to take the car to the closest gas station less than half a mile up the road while he changed out oxygen tanks. He was hesitant about letting me drive by myself but he finally reneged.  I turned onto the main road and hit a construction crew repaving the road. <sigh> Why is it when you are in a hurry everyone gets in your way?

Finally, I pass through the destruction/construction zone and make it to the gas pump. I have five minutes to make it the fiftee- minute drive to my therapy appointment and I reach into my pocket for my ATM card for the gas, but it was not there. Where is my ATM card, I had a brief moment of panic before I remembered I had changed pants before leaving home.

I did a quick calculation of gas expended and gas left in the tank. I could make it to the rehab place and back to the gas station before I had a bone dry tank. I drove back home. Grabbing my ATM card, my husband and his oxygen, locked the door and started the drive to the rehab place.

I'm barely able to do the speed limit because of the granny driving in front of me. Yes I'm a granny too, but at least I'll drive the speed limited and not ten miles a hour slower. I glanced at the clock in my dashboard. I'm only five minutes late, but I still had eight miles to go, and five stop lights. We hit every one on red. I swear the low fuel light was laughing at me at every light.

We pull into the rehab place and I threw the shifter in park and made my way inside. I'm motioning to my husband to park the car. Now I was fifteen minutes late for my appointment for OT. I greet the receptionist who looks at the clock. By their clock there was only five minutes left of my therapy time. I told her to tell the therapist that I was here even though I knew I wouldn't have time with her.

My OT came out into the lobby and saw the look on my face. I started apologizing for being so late and began telling her why, but my aphasia ate my words. Tears started running down my cheek. She put her arm around me and took me to the back room so I wasn't blubbering in the lobby full of patients. Once seated in the back, she handed me some tissues. I was mad and aggravated, but I was crying which made me even more mad and aggravated.

 Of course my old, very concerned speech therapist came to my aid because she can speak aphasia. Not many people can, but she is truly a rare gem. Both my OT and speech therapists work almost exclusively with brain injury patients too which helps.

 Finally, I calmed down and my words came back. I somewhat haltingly told them what had gone on. Both were sympathetic and empathetic. There are some important differences between these two abilities, but having both is golden. By the time they were done with me, the water works had stopped and I was ready to begin my PT session.

My PT session was the pits. My emotional outburst caused all the muscles to tighten so my range was not good. My ankle was in high spasticity as I described above and no amount of hand work would break the brain's response. God knows the therapist did try for over an hour using every tool she had available. Finally we both gave up. We'll try again next week.

We made it to the gas station with one tenth of a gallon to spare. Am I good or what?

So how do you deal with aggravation?

Nothing is impossible if you make up your mind to do it.