After a Stroke~ A blog and a rant

Kate Allatt had a great post today. It was about changing the focus of the National Stroke Association and mental illness in stroke survivor. I whole heartily agree with her.

Is it any wonder why Dean considers the National Stroke Association a joke. For the past two years since my stroke, I've subscribed to their newsletter. What do I find in my inbox? Pleas for money, participation in fund raisers, and a focus on stroke prevention, ie, F.A.S.T. As if stroke

survivors had abundant loose change floating about to donate.  Many stroke survivors are in the same boat I am. Our loose change goes towards NEEDS because recovery is first out of our pockets. Fund raisers and awareness campaigns are a great thing to do for nonstroke survivors. F.A.S.T is a half lustered approach for warning signs you may be having a stroke, but why give the stroke survivor a goodie bag full of advertising. Isn't that like putting the cart in front of the horse?

National Stroke Association put that money into where the money can do the most good for stroke survivors...research and recovery, even adaption techniques would be more useful.

After all, that's the only reason I and most survivors read your site. To date, I can count on one hand how many articles were geared for the stroke survivor. We didn't die from our stroke and trying to find normalcy. Help us. Be of use to us. Sure prevention is important, but surviving a stroke is just as important.

<stepping off that soapbox on to another>

Kate brings to light another point of why mental illness is so prevalent in stroke survivors. Actually, a couple of them. Robin Williams' recent death by suicide sheds new light on depression. He's just one of millions.

In my own experience, I see this happening in my own life. When I first came home after my stroke, my children were failing all over themselves to help their poor, old mom. Granted I couldn't do much. As time progressed, the visits/help became fewer and fewer. I might see the one daughter who lives the closest once a month. The others, every six months, if that.

Yes, as a momma, I make allowances and excuses for this behavior, but really? "Call me, if you need me." But when I do call only when I'm desperate, you are all busy in your own lives and be able to fit me into your schedule next week. I understand this is an intrusion into your life. That's why I waited until I'm desperate!

My daughter came in from AZ. When I asked her to clean (knowing it would be spotless after it was done) my kitchen after a six month's absence, I got, "I told you I wasn't going to do this again."

Forget about Mom had a stroke. Mom has had a seemingly endless pressure sore on her foot. Mom is using every spare ounce of energy she has caring for their stepfather. Forget about the money she was trying to raise on limited resources to help her. Forget Mom is your sounding board and supporter for life past and present. Just nope, "I ain't gonna do it" and didn't. In fact, I saw her only thirty minutes in each of her three visits that week. Closer to ten minutes after she spent time talking to my DH (darling hubby).

When I complained, which I don't do very often, to my oldest daughter who lives an hour away, about the lack of help I got, "Well, I put my life in a holding pattern for the first year after your stroke. When do I get a chance to have a life?"

I won't ask my grandchildren to do clean or do most of the things I can't when they come (few and far between) anymore because they leave a bigger mess than when they started. Once was enough for me to learn this. It took me two months to clean up that mess.

My hospice volunteer had life get in the way. So I hired a neighborhood young man to do the yard work. After a sob story, I paid him in advance for work to be completed. He is history. I haven't seen him for three weeks. Lesson learned and pocket emptied.

I get offers from neighbors and friends near and far to help...

"If I only lived closer." (Even if I know you really mean it)
"Just call."
"What can I do for you?"
"Oh, I don't have time for that right now. Maybe next week"

Frankly, I'm tired of asking for help and not getting it. I may be two years out from my stroke, but there is a long list of things that are just a physical impossibility to do, but I still try because I'm the only one I can depend on while others depend on me too.  Now I know everyone doesn't have the same attitude I do...if you see something needs to be done, then do it. I can't be the only one.

So if you are amazed by what I write I'm doing, in spite of personal risk, please understand I'm doing it because I have to. Don't be amazed. Somethings need to be done whether you can or not. But somethings just can't be done and permanently left undone unless I can find someone else to do it. Is it any wonder that the doctor increased my antidepressant (for Fibromyalgia) to combat signs of stress/depression. Nope, not in my mind.

Sunday Stroke Survival ~ Yoga, Lamaze, and Yoda

You may have looked at the title of this blog and went huh? I wonder how she's gonna pull this one off. Keep reading and be amazed at my connective powers in tying yoga exercises, Lamaze childbirth classes, Yoda (the little, green guy from Star War) and make it relate to my stroke. I'm developing my own form of Jennifer Logic with this one. Allow me to convince you.

The discipline of yoga is one of focus, breathing, and stretching out
both your mind and body. I think we can all agree on that, right? It's a meditative force which allows you to relax your muscles and stretch them farther than anyone would have thought possible. I know you seen some pretty far out there yoga pics online so I won't add them here. But I will say that if you found some Kama Sutra sex positions beyond imagining, some of the Yoga poses are equally challenging.

Essentially you stretch your boundaries, and alter your reality of what is and can be accomplished. Basically mind over matter. Levitation is possible through meditation although I've never seen it. It's also about balance. Balance is a major stumbling block for most stroke patients. I Googled, after my stroke a year ago looking for alternative thinking about recovery, "yoga post stroke" and ran across 500K discussions about it. I skimmed about a quarter of them of them, but the premise is the same as I stated above. I do hold a degree in herbatology and aromatherapy after all. Alternative or natural medicine is my pet love. It also falls within my survivalist mentality.

Lamaze childbirth classes several decades ago, taught me the what was possible with focus and breathing techniques. Yes, I had all five of my children using Lamaze or natural childbirth. I even coached one of my daughters through two natural childbirth experiences. In Lamaze you focus on an object and breath in a controlled manner, and visualize what is being achieved with each contraction and promoting it happening.

Are you getting the connection? Now for the last one ...Yoda. In the Star Wars movie, where the Frank Oz Muppet first appeared, Yoda was this old Jedi knight who taught young, training Jedis how to be Jedis by using the force. In Episode V: The Empire Strikes Back Yoda says to Luke...

Yoda: Size matters not. Look at me. Judge me by my size, do you? Hmm? Hmm. And well you should not. For my ally is the Force, and a powerful ally it is. Life creates it, makes it grow. Its energy surrounds us and binds us. Luminous beings are we, not this crude matter. You must feel the Force around you; here, between you, me, the tree, the rock, everywhere, yes. Even between the land and the ship. 

The fact that we are paralyzed does not matter. It shouldn't be our primary focus. Movement of our paralyzed limbs should be. Before the spasticity set into my paralyzed arm, my husband watched me in my sleep. He said I opened my hand, raised it from the bed and wiggled my fingers... an OT therapy move or what they wanted me to be able to do and visualized myself doing it.

He related this to me the next morning. In disbelief I asked him if he was dreaming. He assured me that he was coming to bed when he noticed the movement. He said he watched me repeat it over ten minutes. I knew he wasn't crazy, but try as I might, I couldn't repeat it while awake. He watched each night for a repeat performance and two of the night five nights he was rewarded with a show.

My hand and fingers today

As I said, this was before the shoulder injury and the spasticity set in. I was flummoxed and I emailed Rebecca Dutton about it, because my other therapists had never heard such a thing. She said if only our subconscious mind could communicate with our conscious one we wouldn't be paralyzed anymore. But even the subconscious mind was reviving pathways in the brain. That's the whole gist behind focus.

Picture is how my wrist, hand and fingers look today a year post stroke. Notice the fingers are NOT closed in a tight fist as they were earlier. Yeah Botox and last time around in OT. I'm still waiting on this new series of shots to work so I can begin again. But I digress...darn my "ADD/dyslexic" brain.

Focus all you mental powers on movement, relaxing muscles with focused breathing on outcome and achievement, and as Yoda says, "May the force be with you."

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.