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.

Thursday's Tumbles and Stumbles~ The Ongoing Saga...

The past couple weeks has been mild in comparison here at the Murphey Saga household. I kept waiting for the terrifying drop of the roller coaster that I knew was around the next bend. It didn't stop me from enjoy some semblance of normalcy by saga standards...barring my hubby dearest's bout with pneumonia and a slight return of his congestive heart failure. Yes, even these occurrences have been deemed slightly frantic after a year of dealing with with them.

Well the dip started Sunday with a choking episode on his part. It's a regular happening with me, due to my aphasia after my stroke, so it's hardly worth mentioning. That episode was followed by eight more over the rest of the day into the next. This was a sign of trouble and needed to be addressed.

Almost every meal became a quick dash of me to the assisted rescue. He has been on a finely chopped meat diet or soft diet for a several months. We have now entered the realm of semi-pureed foods. Nothing overly spicy or seasoned and ground to toddler food consistency.

Now we are not talking about a huge amounts of food in any one meal. I'm still measuring quantities in an eighth of a cup servings for him. Try as he might, he can't eat more than that at one sitting so we have gone to six meals a day trying to maintain as close to 3,000 to 6,000 calories a day. That's including chocolate. I am now making cake pops for him the other way, crumbled cake and frosting mixed together because he has to have a source of liquid to swallow it.

His weight loss has stopped for the time being. He now weighs 90 lbs. His hospice nurse and I feel that he has lost all the weight he can. Any more will be the loss of organ tissue weight. He gains and loses the same half a pound dependent of bowel movements and when the weight was taken, but his Spirit is good.

Now for me, I had a rough time in therapy this week. Ever since last week the muscles in my right (affected) arm has been on the verge of cramping. You know that feeling where you feel like if you move it, you'll get a Charlie Horse. Although when I moved it the arm never locked down into a cramp, but the feeling was there.


I knew my stretching by the therapist would either rectify the problem or cause it to totally cramp up. My next series of Botox isn't until mid March so it probably wasn't the Botox wearing off yet. Yes, it kicked back in after my kidney infection resolved.

I usually scheduled my massage therapy on one day  and my OT on the next to optimize both. As luck would have it, I broke a strap on my AFO over the weekend. My ankle was twisting inside my AFO just like it did in my old one. Monday and Tuesday, my local Hanger Clinic was closed. Wednesday I couldn't be seen until the afternoon. A pressure sore developed. ARGH! It wasn't to the point of rupture, but still very tender and swollen.

I hobbled into the office and while they were fixing my brace, the receptionist informed me that my new shoes were ready. Hot Dog! a twofer. I was beginning to feel the luck of the Irish was smiling at me. I waited to be squeezed in between other patients. The clock slowly ticked off an hour before she ushered me into an office. The shoes fit perfectly! God Bless Keith, my ortho guy. He's now retired and will be sorely missed.

I missed my massage therapy appointment, but rescheduled for after my OT session. It's kind of neat that my massage therapist and my OT talk to each other (with my permission) about my treatments. Now, keep in mind they are two separate practices. My OT will tell my massage therapist to work on certain trigger points after our session and vice versa. That's what I call, continuity in care and therapist going the extra mile for my sake.

The next day, I was really sore after two treatments in one day. In fact I was in PAIN!

While the arm moved fairly freely, the pain had me not moving it. After a shower (yes I finally got one), I looked in the mirror at my right side. I didn't really expect to see anything even though I had two bruises the size of a half dollar at my wrist. But there they were...bruises on other painful points. One about midway on my clavicle, another under my arm on the chest, and another at the cap of my shoulder. Now, I'm not sure who is to blame for this or if it's both of the therapists. I do know that it was not done intentionally, but never the less, I spent four miserable days until it eased up. It was days of reaching for my pain medicine, but deciding to grin and bear it.

So that was my week. How was yours?

Tales of Therapy~ What Are They Teaching Therapists in School???

As I have said before, I have a brand new OT. She only graduated August of 2013.

We were chatting while she was stretching out my fingers. It felt good to have them stretched out, but of so painful getting there. So I asked her the odds of getting my wrist and fingers to behave again.

She started out with that line we (stroke survivors) hate...every stroke is different. I do have a bit of a contracture of the tendons in my ring and middle ring at the large, middle knuckle. I almost snatched my hand away and strike her severely about the head and shoulder. Nah, I wouldn't hurt a fly unless it was aggravating me.

She started spouting out all the book knowledge she had absorbed about neurological and stroke rehab. I listened intently because I was curious and I wasn't going anywhere for at least another forty-five minutes. It was adult conversation other than talk about the dying process I get at home. Something I sorely lack and am hungry for plus it was about me in a round about way.

In a way it was helping me speech therapy wise without being in speech. We were conversing back and forth. I had to process data which was almost foreign to me having never studied anything but basic range of motion in school. When I didn't understand something, she broke it down to where I could.

In talking about stroke patients she mentioned that she had been taught that there was a two-year window for recovery. That after that period of time no new recovery takes place.
What?! Yeah, I was seeing red too.
I asked her what I was doing in therapy with her then because I'm past the two-year deadline.

She looked at me and realized what she had said. She hemmed hawed around and said, "But since, I've seen some pretty miraculous movement improvement in survivors in over two years post stroke."

"So why did they teach you that in school?" I asked.

"Probably because they needed a guideline, but they are wrong."

"Yeah, they are. Have they never hears of neuroplasticity? Have they never seen a survivor go past the two-year mark? There are tons of reports and studies that dispels that number." I laid my hand down on the towel. The fingers in a relaxed curl rather than a clenched fist even though I was upset.

"So I've heard from other patients."

"If I ever hear you say that to another stroke survivor, I'm going to paddle your butt. You are the authority they look to for hope and straight answers. It would be so easy for a survivor to give up trying for recovery. They need encouragement whether their stroke was yesterday or fifteen years past. You don't want to be the cause of someone giving up, do you?"

She nodded. "I can be encouraging."

"I know you will be. You're just new to all of this and you haven't gained enough experience, but it will come." I reached over and patted her on the shoulder. "Just remember, this grandma with a paddle waiting."

She helped me up from the work table. Across the room, I saw the man I had a run in with about men folk coming here to work not rubbed on. I nodded in his direction.

My OT chuckled, "After last time, she decided to work on him away from everyone else. He didn't learn his lesson and still running off at the mouth."

I shook my head and said a silent prayer of forgiveness for him. "Some people will never learn. Good, ol', southern boys are the worst at learning."

She cocked her head sideways at the Nu-Step machine, "Southern gals too."

"Yeah, I'm a transplant. In Georgia by choice. There are quite a few times when I'm delighted to say that."

"Me too! An hour earlier on Friday?"

"I'll be here with bells on. You make me hurt so good." I said with a laugh.

She walked me out of the therapy room. At the door, instead of walking through and holding the door for me, she pushed it from inside. "My next patient is here and I don't want her to see me. She's a good, ol' gal."

As I passed the seating area, I saw her. Hair fizzed and sprayed to the high heavens. I could just see the rebel flag tattoo on her arm under her rolled up, grungy t-shirt sleeve over cut-off jeans shorts. Enough make-up to put Tammy Faye Baker to shame. Her crass voice carried across the waiting room. Yes, no doubt about who the patient was.

I continued walking out the sliding doors and took a deep breath on non-White Shoulders perfumed air. The woman must have used half a bottle of the stuff.

Sunday Stroke Survival~ Odds,Ends, and Thanks!

Thank you for all the good wishes and concern about my hand and my fall. Y'all make it the best of a bad situation. I do appreciate you. My left hand is better. See all you naysayers out there it wasn't broken. You know who you are.

I call this blog the Murphey Saga because nobody would believe what life throws at us on a daily basis unless I write about it. My tagline remains the same although I'm not writing (book or article wise) right now. Because my stroke and my life IS getting in the way of my love of writing and storytelling.

I thought I would explain this to the fifty odd new followers and readers (maybe more) of this blog that didn't know. The title came about in the Compuserve Writers Forum too many years ago. It was in answer to a response I got to a post. I don't remember what it was about now.

I answered, "The Murphey Sa-a-aga-a. The ongoing story of a family in a small town in Georgia. Where the Luck of the Irish and Murphy's Law collide in writing. A soap opera so unbelievable that if it was truly on-air you would not watch it because it had to be fake."

There you have it. That's the reason behind my title of this blog. Any questions?

Notables-

• I reached 100,000 hits on my blog this week. That figure boggles my mind. Maybe if I had written 1,000 blogs it would be feasible, but 100,000!
• The second thing is I've written just over 500 blog posts. That has to be a record of some kind for me. I didn't think I had that much in general to write about my life. But there is so much going on, I can't help myself.

Thanks to the Stroke Tribe.( Amy, Dean, Barb, Rebecca, John to name a few) No matter what. They've got my back. Through them I gain

valuable information so I at least sound more creditable. When I talk to professionals about what works and what doesn't, new innovated techniques, and their support has been invaluable during this recovery period since my strokes.

My cheerleaders along this journey from the Compuserve Books and Authors Forum (Zan Marie, Sara, Lara to name a few). We tag-a-long after each other like long time pals though we have never met in person. Thanks! You brighten my days.

Without all of you I couldn't have reached these numbers. Aw shucks! Y'all have got me bawling now just thinking of y'all. OR, maybe it's just my PBA kicking in again. Got ya!

Well, rehab has stopped for the time being while I wait for my next series of Botox injections. Spasticity has raised its ugly, fat head once again.

But something is different this time around. The spasticity doesn't seem as bad. Yes, I'm hampered from moving as much as I did when the Botox first started working. But I am still able to move instead of being drawn up. I'm happy to say the Botox has worn off totally in my leg. The ankle was so unsteady that walking was down right a dicey proposition at times. And no, it didn't stop another pressure sore from coming up.

Speaking of pressure sores, I'm not so sure that's what I have going on with my foot. A large blister will form under the callus on my foot where the AFO rubs. Sort of like you get when you wear tight shoes. When the blister pops it takes the callus with it leaving an open wound. This wound gets bigger and deeper with each occurrence. In that way it's like a pressure sore. It is also from pressure of walking while wearing my AFO. Still fighting the insurance company for a new one.

Yes it takes ointments and wet/dry dressings to heal like a pressure sore. It takes a doctor or me to cut away the dead tissue with a scalpel at the edges to heal.  But is it really a pressure sore...I dunno. I take the same attitude with it as dealing with Southeastern Legless Lizards...

1. If it looks like a snake
2. If it moves like a snake
3. If it has a forked tongue like a snake
4. Has dead, glassy eyes like a snake...

It is a snake! Quick kill it!
Therefore until I'm actually told otherwise...these are reoccurring pressure sores. I don't feel like taking the same advice about this lizard though. As long as it stays away from me...it can live.

Probably sometime next week I'll tell you how the week went. Once again, it's the continuing s-a-ag-a of the Murphey household.

Nothing is impossible with determination.

Sunday Stroke Survival~ What Goes Up...

Credit

When I was in inpatient rehab, I made the statement..."It's not if I fall but when I fall." Well, I did it again Wednesday.

Let me backtrack to Tuesday's OT. I awoke later than usual so I decided to double up on my Baclofen before therapy. The tightness in my bicep and pectoral muscles gave me an inkling that therapy may have to stop after this week. Higher tone is the precursor for me that the Botox is wearing off with the spasticity to follow quickly after. Therapy confirmed it even after ice and heat were used but the fingers still stretched.

I got home to find the sitter gone and daughter #2 and her youngest son at the house. Triston (15 next month) is my yard man. They'd been at the house long enough for him to mow the front and half the back before I came home via the tractor. Next came the mandatory Skype call to our #4 daughter in AZ. During that time daughter #1 comes in from Savannah with daughter #2's oldest son and her two boys (13 &7). A houseful! I set each of them on a task, mostly outside to keep them busy. As you can imagine, my hubby and I were both exhausted by the time all of them left.

Wednesday morning was bad from the start. I had slept hard so everything decided it wanted to play at Rice Krispies (snap, crackle & pop). With a groan and several attempts, I got out of bed. I waddled my way into the living to administer my husband's medicines and empty his urinal. Then it was, hop into the shower for a bath before therapy at 11. Needless to say, all the energy from a good, solid night's sleep was diminished by half by just these simple acts including getting dressed. Getting dressed was more of a chore than it usually was. I got my panties in a wad, fought with my compression knee-highs, and my shirt wanted to bunch up and make life difficult. But I fed the animals, watered them, and gave each of them undivided attention that they craved. So now I've used six of twelve spoons via the spoon theory of energy.

Before leaving and the sitter arriving, I checked in with my hubby to see if he needed anything. Coffee. Keep in mind that the pressure sore on my foot ruptured three days ago and walking is difficult, I waddled to the kitchen and made his coffee. Thanks to my #2 daughter buying him a Keurig one cup coffee maker for Christmas, this was a quick fix.

But then he mentioned the bottom sheet on his bed had worked loose. I managed the tug and pull the fitted bottom sheet back into place. I might mention at this point, his mattress is an air mattress with a hose that is attached to the electric compressor unit... another spoon or a spoon and half gone.(7-8 spoons expended with 4-5 left until nap time at 3pm) Knowing I had therapy (2-3 spoons, fix lunch, administer meds, and odd & end things before I got a nap another 2-3 spoons worth).

The sitter arrived and I headed out the door. Fifteen minutes to get to the rehab place. I stepped onto the ramp and surfed hanging ten halfway down the ramp. It had rained heavily the night before. I landed in a half split and on my rump. For once I was thanking God for my six ax handles across bottom...plenty of padding to land on.

I did a quick assessment. Everything moved without much pain so I rolled over and ungracefully got to my feet. I rushed at top speed, a glorified slow walk, to my car and drove to therapy...not even concerned what I looked like. I was going to be late and I hate to be late.

All seven traffic lights were green and no serious idiot drivers were met. All the handicapped spots were taken. I mean really! There are only twelve of them! I ended up parking in a regular spot about three hundred feet from the door. That doesn't sound like much but try doing it with an open pressure sore and opening your car door wide enough to get out of your car in a regular size parking space.

Anyhow, I wobble through the door and look at the clock over the check in, three minutes late. My OT escorted me back into the therapy room a moment later. I began telling her about my morning. She asked ice or heat? I answered both. Ice on the spastic muscles in my bicep, pectoral, and left wrist that was beginning to smart and swell. Heat to the shoulder, neck, lower back, and the tricep which were knotted up from the fall. She off offhandedly mentioned I might want to get an x-ray but bit her tongue at the look on my face.

Well my therapy session did not go well, but then there is always Friday. Come Friday we'll make an assessment on whether or not to do another week or stop until after my next Botox injections. While I was resting between stretches, she grabbed a towel with a bottle of alcohol and cleaned all the scraped areas that I didn't know I had. Believe me when I say I felt every single one after the alcohol. My wrists, right hand, and knees had too many to count sharp intakes of breath.

We both examined my left, only one working right now, wrist. No point tenderness, but swelling, pain upon moving the thumb and pinky fingers but not sharp enough for a break. Yeah, I know what that feels like. A humongous bruise turning shades of black and purple on the outside edge of the palm, but both of us didn't think anything was broken. So I wrapped it up in an Ace bandage and called it a day.

Trying to do anything with an Ace bandage on your only working hand is ridiculous! Everything else I'd planned to do went out the window. The exception was changing out my husband's M6 oxygen tank. It was so much fun changing out the regulator with three working fingers. I won't even bother to go into it here. I'll leave it to your imagination. But you gotta do what you gotta do. I did leave putting it back in its bag for my hubby to do. I did try but bent my thumb back farther than it wanted to go. Stifling a scream, I grabbed it all and carried it to his bed.

Thursday morning was a bear. All the abuse I put my body through the previous day told the tale. Accidents always feel worse the day after. I basically took it easy. The hospice aide was here and daughter #2 and our oldest granddaughter (14) were here to pick up my slack, but God knows I needed the help. Shuffling around like a little old ( much older than I am think 90+) lady was an improvement. I got on Facebook and my emails typing with three fingers. I didn't think that there was one part of my body that didn't ache.

I looked at a pair of fingerless gloves that's on my loom for my eldest granddaughter for her birthday and knew it would have to wait. What's to sense of having a do nothing day when you can't do something you want to do? It's one of those Grumbling, growling moments.

Friday was OT again. One more week of therapy and we'll be done until after the next series of Botox. (sigh) How was y'all's week?

Nothing is impossible with determination.

Sunday Stroke Survival~ Back in the Saddle Again Finally!

Well, most of my Facebook friends know, but y'all don't know that I've started OT again on my arm. This was my first week back since September of last year. Why the delay? I couldn't arrange (read afford) a private sitter for my DH (darling hubby) for me to arrange for my therapy sessions...

 $15 an hour (1 1/2 hours with drive time)X 3 times a week X 4 weeks in a month = a HUGE expense on a very limited budget. Our insurance will pay for hospice but not for private sitters for my care issues. I just couldn't justify the extra expense nor did we have the money to spare for me to be in therapy. Although my insurance will pay 100% of the therapy bill, I've been borrowing from Peter to pay Paul for some months now and see no end in sight. No, I'm not whining.

When I spoke to an old friend of over twenty years, who is also a minister and volunteer with hospice, about my dilemma she flat told me it wouldn't do to hurt myself because of my husband's health issues. She arranged for a slew of volunteers to sit with my husband for free while I took therapy.

The only problem was my husband's paranoia about too many strangers in the house. This friend got volunteers who were off duty police officers and their spouses. Although most of the officers I worked with many years ago have retired, their children now work on the force. It becomes old home week playing catch up with all of them.

I started OT with a new therapist. My old therapist works strictly in pediatrics now. I was really leery about having to train a new therapist. My old therapist and I understood each other perfectly since both of us were willing to try anything to get results. I expressed my concerns with the director of rehab services when he stopped and talked to me. So in walks this new therapist. I do mean new because she only graduated last August. I begin clearing the air. I've never been shy to say what I want and what I expect. It's the only way to open a meaningful dialogue. AND, there has to be a meaningful dialogue for progress to occur.

She stepped out of the room for some heat packs for my shoulder, arm, and hand when the rehab director poked his head into the room. I could see the question in his eyes...'Well, what do you think?' I gave him a thumb up. The young lady was open and honest. It was a starting place.

The witch with a "B" about my stroke is paralysis with high tone and spasticity. While the Botox reduces the amount of spasticity in the bicep and pectoral muscles the tone is still in play. This is most obvious in my wrist and fingers.

We've only had one mild disagreement in the past two sessions about paralysis. In school she was taught that true paralysis dealt with only flaccid muscles and no voluntary motor response so because I exhibited high tone and spasticity I wasn't paralyzed. Well, she was wrong. To prove it I Googled the definition of paralysis on my Kindle in a medical dictionary. I left her with one sage piece of advice. Learn something new each day.

The second session I heard something I hadn't heard in over a year. I believed it. I'd worked towards it. But had not heard a medical professional say it. There is hope for almost full recovery of my arm. I had expressed if I could just get use of my elbow back that I would be happy. Then I got a cramp in my hand as she stretched my fingers out one by one. My fingers out stretched like a gnarled, old witch's hand during the cramp. Both of us stared at it in surprise. Our eyes met and "Did you see that!" came out of both of our mouths in unison. The hand curled back into a fist after it was over.

"We've got to work harder on this!" she said. "Heck with only your elbow. We're gonna get your hand back too!"

Now, I can't wait for my Tuesday therapy session. It won't happen overnight, but with time, I may just do that. It was just the hope renewal I needed.

Nothing is impossible with determination.

Sunday Stroke Survival ~ "Please Sir, I Want Some More."

I have come to the realization that stroke survivors are a glutton for punishment in regards to physical and occupational therapy. We are like Oliver in Charles Dicken's play Oliver Twist...'Please, sir, I want some more.'

I find myself back in physical therapy after my latest round on Botox injections. I laid or sat on the mat for the initial evaluation and I'm talking to the therapist. "A little more, pain level about a 5, that's it." Because the spasticity kicks in and my pain level shoots to about a 7. I feel like Oliver being the only voice speaking up in a large group.

Granted other aphasic stroke patients can't verbalize as well as I can. Many others just do not speak up. I tend to be very vocal. I'll talk you through my therapy routine. If you don't communicate with your therapists, you are only hurting yourself.

I call my therapist a terrorist to her face and she laughs. She knows I don't really mean it. I asked for this, almost demanded it. It's the only way for me to regain the use of my affected side. I know if my limits are not pushed there is no improvement.

I use pain as an indicator. I'll push until I reach 7 out of 10 because even my heart attack was only a 7 out of 10. Then have been a few occasions when I've hit a 10. When I was shot. When I was in a helicopter crash. When I fell down a flight of stairs in an apartment complex and broke several bones. It is not an enjoyable feeling. At 7, I may have tears rolling down my face and my words will catch. At 10, there will be tears, my mouth will open and close but no sound will come out. So if I'm talking to you, I'm fine.

Even if I can't speak like the early days of my stroke, the nurses and I worked out a set of signals. At 7, my hand will be slapping the bed. At 10, my eyes are shut tight and my functioning hand is in a fist. Again, if I'm making noise, I'm okay.

In some ways, I think my therapists appreciate my candor. I have worked with many of them over the years on various assorted parts of my body. I know they don't intentionally want to do me harm. Their job is to help me get better. In my mind, if I don't tell them; they don't know. I am very opinionated and vocal so you can image how my aphasia affects me.

I'm always fair. I give them the benefit of doubt. I weigh
everything in pros and cons. Nothing is all terrible or all fantastic. I'll try anything until I can prove it doesn't work. There have been plenty of times I've been skeptical and been proven wrong.

Like the OT's use of the fluidotherapy machine on my paralyzed hand and wrist. I couldn't see how grit and warm circulating air would enable me to move my hand. I thought it was a useless, waste of time for about a month. Then I noticed how relaxed my hand and wrist were after spending a few minutes in the machine. I'm not totally sold on it yet, but I'm starting to see some benefits. Now, I'll ask for it or paraffin before stretching.

While I will work my paralyzed extremities at home. I'll wearing the braces and supports until pain causes me to take them off. I'm proactive in my therapy or as much as I can be. So haven't the therapists taught me how to do everything by now? Probably. Possibly enough for me to do most at home, so why do I go? They can get better angles working on and with me than I can do by myself. I've used headboards, footboards, shower curtain rods, and assorted other things to mimic what they do at home, but still it takes two hands and sometimes a knee to pull and stretch muscles out to the fullest and keep everything aligned. That I can't do by myself.

So I'll continue to be a glutton for punishment and ask, "Please sir, I want some more."

Nothing is impossible with determination.

Sunday Stroke Survivor ~ Bye Bye OT

Well this week saw the final hurrah of my last Botox series of injections. The spasticity has returned to full force. In other words, I can't do nuthin' with my arm and leg.

Well almost nothing. I have a bit more mobility than I started with, but I have to really work for it. It now takes 45 minutes to get my wrist out of the 90 degree angle into a neutral position. Before the Botox, it just wasn't going. So putting on my splits and braces is a two-hour long process instead of 15 minutes. If it's not my wrist and hand it's my bicep holding me back.

After Fluto and paraffin, it still took 40 minutes for my therapist working with my hand

and fingers to get them partially relaxed, but the tendons were so tight. That pretty much ate up my session. I looked at her and she looked back at me, and I said, "We're just pissing in the wind trying to stay dry aren't we?" She nodded her head sadly. That was my last therapy appointment until after my next Botox treatments.

I knew it was coming last week. I started achieving less with more spasms. I was reaching 8 out of 10 pain levels a lot more than the week before. Even the grip I had accomplished during my sessions is gone. I'm back to my inverted, contracted self.

But the good news is that I've got a neurologist that is all for anything I want to try. Ask her and she'll write an order for it. For someone like me who thinks outside the box most times, this is a godsend. Now if something is truly unreasonable after I voice what and why I want it, she'll deny it. She is the doctor after all. But just like me having all my ducks in a row when I ask for something; she has to do the same when dealing with me. But I like this relationship and it is a relationship. A partnership borne out of mutual respect and wanting to see me achieve. These are all my doctor patient relationships. I don't have the time or money for anything else. There are just too many ologist in our lives.

My next scheduled Botox is on the 23rd so I should be back in therapies (PT and OT) by June. It is my hope to strengthen the weakened muscles to compensate and eliminate the spasticity for good. Otherwise I wouldn't put myself through this. I'm looking forward to the day when I can say, "Spasticity? What spasticity?" It may be a long time coming, but I'll continue for as long as it takes.

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~ Therapist- Rah, Rah, Rah!

I've gone through the gambit of therapies before and since my stroke... aquatherapy, aromatherapy, chemotherapy, cognitive therapy, drug therapy, electromagnet therapy, hypnotherapy, psychotherapy, and radiation therapy just to name a few off the top of my head.

I coined the word ogologistitis too many years ago. Too many -ologist in my life (ologist= specialty and itis =infection or swelling) -cardiologist, psychologist, neurologist, dermatologist, oncologist, endocrinologist...you get the idea. Now I propose a new word therapitis.

 In this case I'm talking about physical, speech and occupational therapists. Things like getting dresses, getting out of bed, walking with a cane were all things I've covered in the past with past injuries so there was not much new to learn. Even most of the stretches and exercises haven't changed much in decades.

There are new therapists and new innovations but muscles work the same way. I'm not knocking the practice. My physical, speech, and occupational terrorists are the best at what they do and are my cheerleaders rooting for me to achieve. It's like the U.S. Army slogan, Be all that you can be" from the 80s. They have a vested interest in me getting better.

Last month, Rebecca Dutton posted about her therapist sometimes break her heart. The key word is sometimes. I can relate. I've have fabulous therapists and some not too great over the years. I tend to request the fabulous ones by name when going back. I'm willing to bet she doesn't put up with slack-offs or ho-hum attitudes anymore than I will. Therapy is hard work. You need a cheerleader for encouragement.

Rebecca, before two devastating strokes, was employed as an occupational therapist. Now, the knowledge is not wasted, it never is. But she has a new empathy for stroke survivors because she is one too. Although not practicing on any patients anymore, other than herself, she has the never say die attitude same as me.

That's part of the reason I follow her blog and email her when I have something weird go on. We've developed quite an on-again/off-again relationship. Not to mention the facts that she can see it from both sides of the streets and has experience borne of years of trials while I'm still a newbie at stroke. Yes, I've been the nurse who saw you through the crisis, but it's people like my physical and occupational therapists who deal with the aftermath.

Where my job was to never a dull moment, their job is mundane day in and day out...repetition, repetition, repetition. Although Forbes magazine lists them as hottest job trends for the coming millennium, I couldn't do it. I'm too much of an action junkie, fast pace, and high stress. Just look at what I've accomplish in over half a century on this planet.

My hat's off to all of them. While I'm constantly out of the box with my thinking and creating my creativity talents to full use, I've got nothing on these dedicated folks. To keep patients motivated and trying to get better is an almost thankless job. You get people moving and doing for themselves, and then they are gone to be followed by a thousand other faces during the year.

But that's the nature of the job. Me, I don't forget who helped me to get here. I send cards and messages back and forth. When I can I'll bake or make them little goodies. Even if I haven't seen them in years! Forgetting where you came from is the quickest way back.

For my old therapists and case workers from Savannah, I made them a Halloween feast. My daughter who lives there helped me and drove me up there to deliver it. Although it wasn't quite Halloween yet, they were shocked. For my PT who just had a baby girl, I gave her a diaper cake before I stopped therapy last year. Now I'm breaking in a new one.  Alright, I didn't make it, but my eldest daughter did. After I talked her through it. Even my Dynasplint rep got one. She had her "Prince Charming" just before Christmas.

Now St. Paddy's day coming up, it's leprechaun hats for all. Little bite sized cakes for whomever wants one. I'll even include the therapists and staff who I've never worked with. I appreciate all of them. Who knows, I may eventually have to.

Yes, I've got the double whammy of ologistitis and therpistitis, but I'm smiling through it all.

Don't say "I can't" and not do. 

Say, "I can't right now, but I'm working on it."

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.