Sunday Stroke Survival: Update

My Botox is in. I'm starting to get some relief of the cramping although actual movement and control haven't kick in yet. It will sometime in the coming days. I'll be calling Monday to set up my therapies again. I can't remember when I've been so excited about going. Imagine, seeing positive gains towards recovery!!

I know it's only temporary at this point, only lasting so long as the Botox is working, but the fact is, I'm meeting goals again other than just maintenance. Last time I managed 2 full minutes of standing, a full weight bearing, without my AFO before the spasticity kicks back in. It might not sound like much, but it's 2 full minutes of freedom after 12 years of my ankle and foot being locked in paralysis and/or spasticity. With support, I can sit, stand, and shift weight from my left and right foot for about 20 minutes without my AFO. It will take time to get new pathways rerouted in my brain and strengthen the muscles to combat the spasticity. 

Whew! It's been years since I've had any positive reinforcement to keep at it and hope alive for recovery. As I end every post with "Nothing is impossible," it is pretty tiring and almost trite to keep hope alive and stay positive. For now, 2 minutes of pre-stroke(s) normalcy is enough.

I had a mini nosebleed this week. In the wee hours I went to the little necessary room and noticed two small drops of blood on the floor. I reached for the toilet tissue to apply it to my nose. I also checked that a hand towel was in easy reach. The wad of toilet paper conveniently stuck in the blood to plaster it to my face as I applied pressure to the right sinus near the bridge of my nose. I was in the bathroom between my daughter and son in law's bedroom and mine, so I was within hollerin' distance of them. I kept waiting for the flow to either pour down the back of my throat or out of my nose. The seconds turned to minutes, it didn't. I gingerly remove the pressure from my nose and waited. Nothing. It had stopped on its own just that quick.

Needless to say, I didn't go back to bed. I sat at my computer for about three hours just in case it started again. I was terrified it would. Finally, as the birds outside began chirping and the skies lightened, I went back to bed. In the following days, no reoccurrence of the nosebleed. All I can do is raise my hand to heaven and say, "Thank you, Jesus!" It's nuts to have to live this way, but at least I know what the cause is not that really helps.

I had my visit with the vascular surgeon and the ultrasound showed a little more progression (ballooning) of my triple A (Abdominal Aortic Aneurysm). But it's still in the "wait and monitor" category. We talked about the swelling in my legs. He didn't think it was a vascular origin problem because diabetes was no longer in my mixed-up medical history. With my Hashimoto's diagnosis though, he thought it was more a lymphedema problem. A blood test was needed to confirm. They also scheduled me for an ultrasound of my carotid arteries. It's been a year since it's been done. 

My heart cath was done Friday. Nothing unusual was found or at least nothing stent worthy. He did have a look at my three leaky valves. Yes, he confirmed they were leaking. (Hurrah!) Maybe he's not that bad at cardiology. He talked to me about valve replacement to which I refused. I'm still looking for a new one.

Nothing is impossible.

Sunday Stroke Survival~ OT-The Other Therapy

I've always thought of OT (occupational therapy) as the other therapy. I've even discounted the need for it because has to do with adapting rather than recovery. There. I said it. I apologize to Rebecca and Amber, both truly gifted OTs.

I'm a results orientated person. While I'll study the steps to get to a certain point, it's getting to that point that's important not settling for less. In this respect, PT (physical therapy)is king while OT is the lowly jester. OT gives you a sense of accomplishment while on your way to the bigger goal. It also catches you when you tumble while shooting those bigger goals.

For example, I'll use my spastic arm which I've been in OT for over a year. Mainly we are doing stretches to ease my spasticity. If the spasticity can be reduced, then there is hope for recovery of my upper arm function. That's a major goal for me. The relaxation and extension of my elbow is either all on or all off at this point. But we are working on this.

OT is learning how to function while on your way to your goals. In my mind it's a stalemate action. Functioning while waiting for the next breakthrough.So it's settling for what you got.  Well not totally, but still it's like plateauing in progress. Nobody really wants it but you have to deal with it.

Occupational therapy deals with ADL (activity of daily living). How to adapt. I don't want to adapt but recover, but until I do I need to know how to take care of my daily needs. The longer I go post stroke, I find all sorts of show-me-how type questions to ask my OT. They aren't basic ADL type questions either. Most of the basic ones have already been answered. Unfortunately, she doesn't have the answers for me. Like washing the outside of my glasses. But what she does do is allow me to use her as a sounding board for possible answers. We bounce ideas off each other until we come up with a plan that works for whatever I want to do.

This increases her knowledge base and adds oil to my squeaky cogs in my brain. Sure I still want to recover everything I lost with my strokes but I realize it will take time maybe even decades. Until then, I want to increase my know-how-to-do-it base of knowledge. I'm adding more and more data into this file each and every day. So I can function beyond my basic ADLs and expand into my survival mode again.

There are many things in my Are You A Survivalist or a Prepper? book that I can no longer do without help. Too many things require two functioning hands to accomplish, but I get by doing all that I can. If I had to set up my solar panels and water catchment system now, it would be almost impossible. I would find it difficult to dig a well for  fresh water. But I can purify it into potable water. I can grow vegetables and fruits to feed me and my family. I still have the working knowledge.

An ordinary OT couldn't answer these how-to questions for me. They didn't have the basic knowledge to advise or show me. I had to figure out a way on my own. Butchering rabbits and chickens was slow going, but I achieved it. It may have not been a perfect job, but I did it.I'm just thankful it wasn't twenty or thirty of them at a time instead of four.

The OT in the rehab hospital couldn't tell me the best way to cook on my rocket stove or solar oven for this very reason. At home, this is all I had to cook on. I had to buy a toaster oven and rice cooker when I came home and eventually a standard stove. But now after almost three years of trial and error, I can cook on the previously mentioned things again.  Yes it takes many more steps to do it all than before, but I can do it.

So I'm looking forward to Spring time and a new garden full of vegetables and herbs, chickens, and rabbits. I know I can do it. My OT is curious enough to want progress reports on how I do. Do I expect to trip and fall, and have trials and errors? Oh yeah, I do, but it's all part of my learning curve my OTs have taught me. The OTs have prepared the soil for me to plants my own seeds to sow and even succeed at it. To me these are my extended ADLs. Beyond the basics.


So watch for updates here as I use what was originally shown me marry what I knew in self sufficiency occupation.  For me, these were my activities of daily living and will be again. My grandsons built me three new elevated raised beds for Christmas. Perfect for my new herb garden. I do love fresh herbs to cook and make medicinal teas with.

The occupational therapists can only take you so far. That is as it should be. The rest is up to you. What ADLs do you do that they didn't teach you after your stroke?

Nothing is impossible with determination.

What a Difference a Week Makes

I don't know why I'm surprised, but each time after the Botox kicks in, I am. I had therapy yesterday. The Botox hasn't kicked in totally because there are still grabs and catches during therapy in the bicep, pectoral, and other muscles in my hemiplegic arm. I mean some hard catches that make me take a sharp intake of breath. The spasticity never truly goes away completely. The spasticity just becomes more manageable.

We were warming up with stretches after the heat packs. I know, I know it should be cold packs, but I'm Abby Normal that way. We've done both, but the hot packs work better.

Now pre- AC joint tear, I had recovered about 85% of my shoulder's range of motion. For the first time in two years, I hit the 85% again. The therapist had my arm over my head in the supine position. Yeah, it was passive motion on my part.  My active range will come later, but for now, it's just stretching. But let me tell you, it hurt so good!

She was surprised, because she's my new therapist and hasn't seen this range from me before. I just wanted to see how far it would actually go before the muscles clenched. Yeah me!

Now for the down side. It only took a couple of hours after therapy before I knew we had pushed too far. Yep, you guessed it. The muscles screamed at me and it was ache and groans upon movement of the arm. I hopped in the shower. Alright, it was more like I sat on the shower chair and pivoted into the shower. I let the scalding hot water pulse the sore muscles away. I did take an extra 4 mgs of Zanaflex too.

I got out and was feeling groggily, content over the achievement I made. Literally drifting on cloud 9 because of the extra dose of muscle relaxer. I went through the rest of the evening in the clouds (read drugged fog). Nothing bothered me. A self satisfied grin firmly painted on my face. I did it!

This morning, there was a residual soreness but nothing like the day before. I'll be ready to do it again. A little bit later, I'll try the stretch again via a Theraband tied to my cannonball bedpost. I won't be as aggressive with myself as yesterday because I want to be in good shape for therapy tomorrow.

I've gotten a number of lengths and colors (resistance strengths) of bands over the years and if I need more, all I have to do is ask. They last forever. I've got some that are ten years old. They have a permanent place of honor in my sock drawer. Why do I keep them, you may ask. I just remember my Mama telling me, "There will always be an again." So far, she hasn't been proven wrong.

Nothing is impossible with determination.

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~ 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.