Sunday Stroke Survival: Spasticity Treatments and Results

Well, I had my latest round of Botox this week. This time with my new neurologist. He had mentioned in our initial meeting that he may try something different than my old neurologist. After a little discussion, he decided not to be adventurous because my maximum dosage was only 400 mg. Better to hit the spots that work.

I must admit I was a little bit disappointed, but he explained that even though he was basically hitting the same spots, he wasn't my previous neurologist. His technique and depths may be different. You can read what others have done (general areas) and still perform it differently. He did add that he was going to request/argue to get a higher dose of Botox out of my insurance carrier. He'll have a fight on his hands, but as my momma used to say, "never say never." After all, my insurance company also had a steadfast policy against another AFO within three years, and we know how that turned out from my previous blogs.

Although personally, the idea of putting even more of this toxic chemical in my body is not my first choice. But with the relaxation of the spasticity, I improve in function and ability. If another 50 or 100 mg. of Botox will reduce my spasticity enough to improve my elbow flexion, my index finger and thumbs mobility, or even straightens the inversion of my foot where I'm able to take even five steps without my AFO, it's worth it.

I've been doing dry needling for over a year now. In the beginning I was having treatments three times a week (upwards of 100 needle sticks between my arm and leg a session). The effects last 25 minutes to a couple of hours. Speed forward a year and a half, I have needling done once every two months on my leg (often only 3-5 needle sticks) and lasts for almost two months depending on where I'm at between Botox sessions. It's lasting that long and my foot is flat on the floor each step instead of the increased pressure and weighted step towards the outside edge of my foot. (This is what caused all my pressure sores the first two years after my stroke) 

A year and a half ago, my arm was clenched into my chest, the wrist was greater than 90 degrees, and the fingers didn't move. Again, fast forward to present time. Right before my Botox session, My arm rested at 45 to 60 degree angle. A far cry from at almost 180 degree angle it had before a Botox session. Even better, I was 5 degrees off from full extension at the elbow the day before the Botox. The wrist is still stubborn, but mostly because of the wrist contractures. The same goes for my ring and bird fingers, but my thumb, index and pinky fingers can be straightened into a sign language "I love you." I can even hold that position now for about 5 seconds after a good stretching session. I can move my thumb and index fingers together in a pincer form although it takes me a few minutes to do and a whole lot of concentration. I'm pretty well exhausted after doing it twice. The spots that get dry needling now, my steel traps (trapezius) once a month, my bicep twice a month, my pectoral and shoulder blade every four months, my triceps about every three months. My lower bicep, my elbow extenders, lower arm, wrist, and hand now only require WEEKLY visits. (Less than 25 sticks) How's that for progress?

My drugs have been a consistent juggle. Between 40-60 mg of Baclofen a day instead of the 80 mg I was up to. It depends on when my Botox wears off. Most days, it's 40 mg. I tried to drop the dose down to 20mg a day because I felt so good, but my body let me know the extra 20 mg per day. The Zannaflex is down to 8-12 mg per day instead of 16 mg. Again, it depends on how my Botox levels are. Most nights, it's 8 mg because it helps me sleep more comfortably. I eliminate the daytime dose. The Valium, I was on 5-10 mg. I can't even remember when the last time I took it. The really good thing, I was on Cymbalta and Lyrica for my fibromyalgia. Now, it's just Cymbalta. So less drugs and less pain is always a great thing. Better for my body and my pocketbook.

Yeah, it's been a while to reach this point. But like everything about recovering from stroke loss... it takes time. How much time? Who knows, but what else have I got to do? Anyhow...

Nothing is impossible.

Sunday Stroke Survivor ~ Video Games?

A new research study out of Canada is using video games for stroke rehab. I thought "Wow, that will be a challenge!" My second thought was, "How could I do it one handed?" My third thought was, "Doh! You old timer you."

The reasons my thought processes worked like this is I've long been a supporter of making rehab fun no matter what your age is. If something is fun then you are more apt to do it. In fact I've mentioned the computer/internet games that I "play" to rebuild my cognitive deficits. Those are easy with a click of the mouse, but video games?

wikipedia

I've played video games since way back when. I even had one of the first Atari systems ever built. Yeah I'm a geek and proud of it. I was a computer programmer back then. Matter of fact, I still have it in my attic. It came with Space Invaders. I even bought a few more games for it before I switched over to a Nintendo. But I digress.

I've always like the way it built eye-hand coordination and logic skills. Before my stroke I even bought a X-Box 360 hoping to get my husband to play as a way to keep his mental acuity strong. I believe if you don't use it - you lose it. Video games would be a great way to rebuild cognitive deficits like logic, progression, and sequencing. Plus it didn't hurt to have it for my grandchildren either.

wikipedia

But how would I play one handed? I've often thought since my stroke that it would be great to play with my grandchildren BUT I only had one working hand and it takes two. That pretty well left me out of the loop. I became the spectator cheering on others while they played.

Just like texting is faster with two thumbs, the control is not handicap friendly.

My third thought was when I realized that with a WII or X-Box Kinect it was possible to play the game without two functioning hands. That was was my Doh! moment. By moving my body for the body on the screen, it becomes a PT workout AND a cognitive work out at the same time. Unfortunately, I don't have the Kinect. I bought my X-Box when it was the "new" system out there. As with a technology based product, it has a life of six months before a new, better model comes out. Built in obsolescence.

I can see the movement, the eye- body coordination, balance training, stretching, and the fun factor helping us help ourselves. The more we attempt to move the more neuron pathways we build thus recovery. It's a win/win situation to me.

I PROPOSE MORE FUN IN STROKE SURVIVORS' LIVES! Lord knows, we've been through and still going through a lot. I've got an idea!

It couldn't hurt. Tis almost the season.

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 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.

Thursday Turmoil~ The End for Right Now

This week came time to say goodbye again to my physical therapist. Sad, though she knows I'll be back.


I'd reached a point where PT was causing more pain than benefit with the returning of my spasticity and months to go, May, before another series of Botox injections. Yes, therapy does break the pattern of spastic muscles but the work outs were reaching the 8 out of 10 on the pain scale and lasting more than a day. Each therapy day I found myself having less and less progress because of it. The frustration was the real killer.

I had dropped the work on my foot and ankle for this very reason a couple of weeks ago. Between the Achilles tendon contracture and the spasticity we were only going through the motions, and not making a smidgen of progress.

Yes, I do know it takes time. I've said often enough here that time is money. I achieved a 30% increase in mobility of my shoulder and 80% regain in active motion of my elbow. I am now better in active range so that's a measurable progress. I absolutely despise having to pick and choose. But decisions have to be made towards optimal versus palliative alternatives within a given set of dollar choices. If I had my way I would stay in all therapies twice to three times a week until I recovered all I lost, but short of spending thousands of dollars out of pocket, that isn't an option.

I've talked about the contracture of my Achilles tendon, right? From what I've learned, it's fairly common with stroke survivors. It will take time to remedy. I'm using my therapy bucks wisely this year for optimal recovery. I'm in recovery for the long haul. There is no quick solution. I wish there was.

On a different note, I went shoe shopping the other day. I had no success. Where do y'all AFO wearers find shoes that fit??? I mean pulling the inside soles out of brand new shoes in the stores is sort of frowned upon. I was told one size higher and a wide width when purchasing shoes with my AFO. My orthodics maker said that Dr. Comfort makes shoes for AFOs, but the cost is like $175 for a pair of shoes! Then you are ordering via the internet so there's no guarantee once you get the shoes whether they'll fit or not. Now with the additional block on my AFO, it makes it doubly hard.

I must have tried on fifteen pairs of tennis shoes in the store! None of them were wide enough to allow for the width of the AFO. I could use some advice from someone who has walked in my shoes literally. My current pair was gotten while I was in the hospital by Hanger. I figured $129 worth of shoes wouldn't wear out so fast. In ten short months the instep sole has worn out to nonexistent in my left fully functioning foot. The soles are pulling loose and cracked. They pick up every piece of pine straw and Spanish moss it steps on. I've been to every shoe store in my town with no luck. HELP!