WARNING: Three Things You Need to Know About Your AFO (Ankle/Foot Orthotic), aka People Fuck Up

A long time ago, in a land far, far away (I'm kidding--it was New Jersey), a man, called an orthotist, came to Absecon Manor, a nursing home where I was a patient, and huddled with the physical therapists with no input from me. I wanted to know about the options for materials for the brace, the cost, the right to come back for fittings. But they huddled without me. 

He fitted me for a brace, wrapping plaster on  my socked leg that acted as the mold. He produced what is known universally as an AFO (pictured right).

I hated the AFO. It was cumbersome, and the man told me, in no uncertain and threatening terms, that I could go nowhere without it. I had to wear a high sock, even in the blazing heat of summer, to cover the plastic of the brace which would irritate my skin if it got stuck to it. At night, I'd take it off, where many times the AFO would go with me for an urgent bathroom trip. 

Brace on when I awoke, brace off when I wanted to read stretched out on the sofa, brace on when I wanted a drink from the kitchen, brace off when I wanted to take an hour nap, brace on when I wanted lunch, brace off when I wanted to do my sitting-down exercises, brace on when it was night to close the blinds, brace off.... You do have the pattern, don't you?

Medicare will pay for an AFO every 5 years, and I had the brace for 6 years, so when I moved to Pennsylvania, I found out the AFO was made incorrectly. But I'm getting ahead of myself. Here's my story: 

There are 3 places where I could have the brace made in Pittsburgh. I went to the first, but the orthotist contradicted himself twice. So I lost confidence in him for what I thought was unadulterated bullshit. 

I went to the second place, but the orthotist didn't remember that she took pictures of the old brace twice to remind herself where the strap had to go, she didn't remember an appointment I made with her, and she said there would be a charge when there wasn't any. The same deal. No confidence. 

There was only one place left. I met the orthotist--I'll call him Bill--and he didn't like all the questions I asked, and he would rather that I be stupid, just barely tolerating the questions. And I just barely saved the best place for last.

Bill socked my foot and put the plaster over to create a mold. I came back in a week to receive the finished AFO.

"It hurts in my ankle and there's pain around the calf," I said.

"Try it and call us back if there's any problems," Bill replied.

"Um, I already told you. There's pain in my ankle and calf."

So he adjusted my AFO with some kind of melting-plastic thing and tried it again.

"That's all I can do," Bill said, preferring the people who went in there were uncomplaining and settled on whatever they dished out. 

I left because I had 90 days to complain. I read the fine print.

I called the next morning to request another appointment, and the receptionist said there was nothing available until next week. 

"Look again. My old brace has fractures, and it's only a matter of time when I will be bedridden without the brace," I whined. The old brace did have fractures, but bedridden? I may have exaggerated a teensy bit, but as my father once said, "The squeaky wheel gets the oil." So the receptionist found a spot that afternoon.

But this time, the manager--I'll refer to him as Dave who is an orthotist as well--was there, filled with so much more knowledge than Bill and offering to recast my leg for yet another brace.

I have been there 4 times so far and here's what Dave said, 3 things about the AFO that I think you should know:

1. The AFO must come 1" to 1-1/2" below the head of the fibula. You probably won't know what I'm talking about, but the orthotist will. Dave said the 6-year-old brace was too tall and Bill's brace was too short. Maybe that's why Bill's brace caused me pain, impinging on a nerve. I was impressed with Dave's honesty. He had my interests, instead of the company's, at heart. 

2. Dave also told me that the best material for the AFO is co-polymer, rather than the polypropylene which is a generic name for thousands of compounds used by thousands of vendors. The co-polymer is more rigid and 1/16 of an inch thicker, but it isn't subject to the fractures around the joints--the places where nut and screws go on the AFO--like the polypropylene.

3. The AFO, like the original, 6-year-old one, was free of charge. That news only cheered me up because I needed it. It wasn't a "hurrah" moment and I already knew that Medicare covers the AFO every 5 years.

But there was a chink in the armor, if you will. I'm going back, one more time--at least. My physical therapist saw my new brace and told me to tell Dave that my foot is externally rotated. The brace is supposed to re-mediate that problem, she said. Dave told me that my foot is internally rotated, coming from my hip. There's nothing more he could do.

So they're going to have a conversation in a few days--two experts who both know what they're talking about. Hoo-boy. I'd love to be a fly on the wall for that exchange. I'll let you know in a future post who won. 

Bottom line: I have to wear this brace 18 hours a day and it can't be a C+ situation. The AFO needs an A+. I won't settle for anything less. You shouldn't either. 

The Chances of Getting a Second Stroke, aka Who Me? Worry?

Everybody worries about getting a second stroke after the agony of the first one. So read on.

You probably don't know James Wilson, but the folks at Lighthouse Baptist Church do. In 2000, the Pastor wrote a sermon called "Who Me? Worry?" that has absolutely no connection to the gap-toothed poster boy of MAD Magazine, Alfred E. Neuman, who said sort of the same thing. Alfred substituted "what" for "who." But I digress. 


Anyway, in the sermon, Pastor Wilson took Matthew's words in the New Testament (chapter 6, verse 34) and brought them up to date: 

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. 

His sermon was about how much we worry about real things, like children worrying about death, and adults worrying about leaving their children too early when death knocks on their door.

In my world, a second stroke was the real thing. After almost six years since my stroke which happened April 8, 2009, my top worry was about getting a second stroke. Of course, I Googled it, and I found the following article reported by HealthDay in 2005:

"People who have had a minor stroke have a 43 percent risk of another, potentially fatal stroke within 10 years, Dutch researchers report."

There were 2 things wrong with that report. First, it was only said about one country, and second, the report was 10 years old. So I continued to look and found this one from Deborah Davis, DNP (Doctor of Nursing Practices), written 10 years later, aka 2015:

"The American Heart Association and  American Stroke Association estimates nearly a third of the strokes which occur every year in the United States are second strokes.  Also, physicians contend there is a 40% chance of having a second stroke within five years of the first."

If that were true, that means I passed the 5-year milestone. And this from Dr. Oz, a cardiologist, television star, and heart throb with the 45-and-older set, written in our current year as well:

"Certainly, many strokes are caused by high blood pressure. For those people, there's a 20 percent recurrence rate within two years if they control their blood pressure, compared to a 50-percent rate if they don't. You can lower that 20 percent even more (by about 70 percent more) by avoiding smoke (even second-hand), eating healthy fats (like 2 grams of distilled fish oil or an ounce of walnuts a day, controlling stress, and meditating daily."  

Last year, Dr. Bernd Kallmunzer of the Department of Neurology at Universitätsklinikum Erlangen in Germany, after conducting a study on second strokes, told Reuters Health, "Taking a pulse reading can detect atrial fibrillation, a leading source of blood clots that travel to the brain and cause stroke. Detecting atrial fibrillation is important because the patient can be treated with anti-clotting medications to reduce the risk of another stroke or death.

"The risk of a second stroke is highest during the months after the first one [now it's months--better yet--and a neck pulse is ideal for somebody who has use of only one hand], but currently researchers do not know exactly how long this kind of pulse monitoring should go on," he said.

I have low blood pressure, low cholesterol, don't smoke and I'm not around smokers, not overweight, and got over my stress through therapy. No, I shouldn't have another stroke, but I shouldn't have had the first one either. (http://stroketales.blogspot.com/2014/07/how-two-legal-drugs-caused-my-stroke.html)

I always say, because it's true, you never know what's around the corner. You just never know.

Ten Things NOT to Say or Do to a Stroke Patient

This post is different. It comes directly from my book, "The Tales of a Stroke Patient." One of these situations just happened--again. I think it needs a re-print in my blog.
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People are funny, and I don’t mean in a ha-ha sort of way. They could be neurotic, bipolar, obsessive-compulsive, anxious, or agoraphobic, just to name a few types. Some of the ones who came to visit me had their own type: dysfunctional-when-meeting-a-stroke-patient.

Even though they had good intentions, in all fairness to me, some of them said and did things that were downright insulting, if I took the comments and body language personally. But I didn’t, for those people who took the time and came to visit me.

In all fairness to them, how could they know the right responses from the wrong. What it really comes down to is this: How do you speak to a stroke patient who’s had her life turned around in a 180-degree spin?

I made a list of the top ten things you should never say or do to a stroke patient, and I, too, have been guilty of most of them before having my stroke when I visited stroke patients. 
So having set the record straight, here goes.

1. Saying ‘good girl’, ‘good boy’, ‘good job’

Those are phrases you should say to your pets when they are being rewarded with a “Pup-Peroni” or Doritos’ chips. If you say them to me, I am not really being a good “anything.” I’m just sayin’. IT’S SORT OF CONDESCENDING.

 

2. Talking loudly

People have a habit of speaking loudly to foreigners and the sick. Just because they are from somewhere else, speaking loudly to a foreigner will not help get your point across. There is no hearing problem involved. The same thing applies to me. HOW DOES SHOUTING HELP?

 

3. Talking slowly

Talking slowly to a foreigner might be an asset. But talking slowly to me makes me feel mentally disabled. How would YOU like it if someone said, “How — are — you — feeling — today?” If I could, (and I wasn’t able to then), I would have talked quickly in response, possibly making them change their way of speaking. I REPEAT–HOW WOULD YOU LIKE IT?

 

4. Making faces at me

Stroke patients are difficult to understand at times, but please don’t squint, or turn your mouth to one side, or wrinkle your nose at me. Just ask me to repeat my statement, and if you still can’t understand, ask the question in a different way. After all, you’re the one with a full brain! SO USE IT!

 

5. Talking over me

I mostly listen, but when I get up the courage to speak, let me do it. Don’t interrupt me in the middle. In other words, LET ME FINISH!

 

6. Completing my sentence

Some people find the right word choice instantly, but it takes me a few seconds more. So please stop trying to fill in the blanks. WAIT! I’LL GET IT!

 

7. Giving me lists of things to do

If you give me a list of five or more things to do, I’ll may miss one. My brain is going, but the parts that are dead…well, simple died and there’s no hope of getting them back. Did you ever hear that heavy drinkers lose brain cells and the cells won’t be replaced? Same thing. YOU HEAR THAT, HEAVY DRINKERS?

 

8. Ignoring me as if I’m invisible

Once in awhile, at Rehab Y, I would see doctors on the outside. If I’m waiting at a new doctor’s office, for example, staring right at some person who’s in charge, the person invariably stares at my friend to find out what my friend wants, forcing me to shout and look like an idiot–which I am not. I shouted several times in person but even more on the phone. Some of the people just don’t listen and say their “shpiel” regardless if I object. “FOR CHRIST SAKE, I HAD A F***ING STROKE. GIMME A BREAK!” 

 

9. Saying I’m not moving fast enough
Once in awhile, people will say something to the effect, “Could I get by you?” and start moving before they even hear the answer. Their rhetorical question, because that’s what it really is, a few times cost me my balance. WHY ARE VISITORS IN SUCH A HURRY IN THE NURSING HOME?

 

10. Hanging up on me

A lot of operators hang up on me. They are nameless and they take advantage of that fact. But it doesn’t help me. WHY WON’T THEY WAIT?

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Currently, all these situations are still going on with me. Yes, I tell it all from my point of view, hoping that healthcare professionals will take advantage of my thoughts, learning why stroke patients are still frustrated. I am tenacious in my mission to educate the world about stroke survivors. Why do I use "patients" and "survivors" interchangeably? Because sometimes, people make me feel like a patient, even now, 6 years later.