Here Come the Vendors

I do a lot of talks about stroke recovery. About 100 per year. I learn so much from the therapists I talk to. Many of them are committed, caring, bright and motivated. I like the fact that I'm doing my talk to good people.

But there is one segment of therapists that can be tough to love. 

Attending my seminars have been lots people from a variety of companies. These companies usually represent products. Sometimes they represent services, clinical trials, organizations, etc. But usually it’s products. And for me, these people can be very dangerous. They either want to know what I'm saying about their product or want me to promote their product. Those who want to know what I'm saying about their product never voluntarily tell me where they work. Those that want to promote their product are just the opposite. At some point in the seminar they'll approach me and talk up their product. And it's always uncomfortable. 

Many of the products have little or no scientific evidence behind them. Doing the research to provide evidence for a product is expensive and laborious. It's quicker, cheaper and less fraught with danger to put your product to market, and promote it. And I become a part of their promotion. So when I'm approached, it usually feels like hucksterism. It feels like I'm being sold on a product so that my seminar might become a platform for promotion.

People will hand me their card, and talk about the product. That card will become a reminder to look at product up. So how do I look it up? I try to strip away the product name in order to get to the core of the product, and then research core. For example, let's say somebody is selling Stroke-A-Way. If I look up Stroke-A-Way all I'll find is what Stroke-A-Way wants me to find. So instead, I look up the "active ingredient" (concept, or exercise, or whatever). I try to see if the active ingredient is scientifically based.

But what if it doesn't work? A lot of times I can go straight to clinical research sites during the seminar and look the "active ingredient" up. I can also send out a quick e-mail to experts in the field (I've been in research for a long time; lots of contacts) and ask their opinion.

So: What if the product sucks?

If the product has no evidence, I don't advocate it. And if you're a vendor, and I say your product has no evidence, you'll be pissed. But you shouldn't be. You're at the course, you read the course description, and you know I'm in research. So... I'm going to do the research.

I wish these folks would read their diploma. On there some place is the word "science." It'll be an Associate of Science, a Bachelor of Science, a Masters of Science, or Doctorate of Science. When you got your license you dedicated yourself to providing treatment options based in... science.

So bringing it up in the seminar is not just dangerous for me, it's dangerous for the vendor. They try to sell me on a product, and make me aware of the product. Then I do the research. What if there is no evidence it work? The next time somebody asks me about the product I'll say there's no evidence behind it. I have to. It's my job. It probably would have been better had they not talk to me about it at all.

You know what the most widely read entry in this entire blog is? The entry on neuroaid. I only became aware of the product because they copped the name of this blog; The Stroke Recovery Blog. The theft got my attention, and made me do the research to find out that it...

• had a very low level of evidence behind it
• was available in a less expensive form
• used researchers who had a clear conflict of interest to promote it.

So if you get my attention, be prepared for the inevitable question: Is it evidence-based? This is my job. And I talked to  a lot of stroke survivors who want it to be the job of every clinician. Figure out what works, and then do it. And the stuff the doesn't work. Don't do it.

BTW: Frankly, I don't necessarily advocate the products advertised on this blog. However, I will not accept advertisement for products A) that clearly don't work or B) competing products exists which better provide the "active ingredient."

 

By: "stroke recovery blog" "stroke blog"

Gotcha. Can't win, don't try.

Bill a stroke survivor has trouble putting on headphones. 

He is able to get the headphones on using just his "good" side. Here's how he does it: First an earpiece on the "good" side and then use the same hand to move the other over to his "bad" side ear. 

Now let's say instead of using only the "good side" he uses both sides. His "good side" hand picks up the headphones, and then his "bad side" hand grasps the other side of the headphones and he puts them on. But in order to get the "bad side" involved he has to do a bunch of weird movements. He hikes up his shoulder, pulls his arm away from his body, and uses an awkward grasp to put the headphone on his ear.

Which do you think would be better? Which would be better in the short run? Which would be better in the long run?

In the short run it may be better to do it with just the "good" arm. It might be quicker, and take less effort. 

But in the long run what would be the effect? First of all he'll never learn how to use both arms for that skill. Also, since he's only using the "good" side for that movement, all the other tasks that use similar movements would not be practiced. And a lot of things use that same movement (Brushing teeth and hair, shaving, feeding, etc.) So he'd have less practice specific to putting on headphones, and then less carryover of that task to other tasks.

But here's the funny part: There are a lot of therapists who believe that he should do it one-handed. The thinking is this: The movement needed to complete the task of both arms is "bad" movement. 

And, so the thinking goes, the more "bad" movement that you use, the more that "bad" movement will be "ingrained". Like a bad habit.

This idea, that "bad" movement should not be encouraged always struck me strange on the face of it. This is the thinking: "The more you move the worse you'll get." 

But everything we know about the brain suggests exactly the opposite. The more you practice something the better you get.

There is a weird assumption that is made: You will never try to move better, you will only use the "bad" movement forevermore. The idea is, survivors don't know what good movement is. Because survivors don't know what good movement is, you need a therapist there to correct you. Which... I don't know about you... sounds like it'll cost you a lot of money.

But let's say they're right. Let's say that if you do the task with both arms you would never do it "correctly." Now you have a decision to make. Do you do it "incorrectly" for the rest of your life, or do you not try to use the "bad" arm?

It was me, I would make the decision to use the "bad" arm. Why? Well first of all I stand a much better chance of learning to move the "bad" side better if I use it in every day tasks... every day. Second, movements from one task can feed forward to other tasks that used similar movements. So I might retrain not just for one task, but for a whole bunch of tasks. Third, I don't let the whole portion of my brain "lie fallow" and not do anything. The brain hates not doing anything. The brain goes through what's called "a pruning of the dendritic arbor." It's a fancy way of saying "use it or lose it." If a portion of the brain is not used, the neurons in that part of the brain start to shrink -- or "prune."

But there's another important reason to use any movement you have. Maybe, at the "end of the day" the task remains awkward and uncoordinated. So what? How many people play golf, enjoy it, but don't play perfectly (all of us)? How many people ski, and enjoy it, and don't have perfect form? What about music, or painting, or writing...

Bart: You make me sick, Homer. You're the one that told me I could do anything if I just put my mind to it.
Homer: Well now that you're a little bit older I can tell you that's a crock. No matter how good you are at something, there's always about a million people better than you.
Bart: Gotcha. Can't win, don't try.

 

 This is my suggestion: Continue trying to do everything. And every time you do it try to make it a little bit better.  

Everybody wants to be an expert before they start. But to become an expert involves a lot of hard work. May as well begin now...

 By: "stroke recovery blog" "stroke blog"

Therapy is upside down.

When a survivor first has their stroke the brain is very vulnerable. And because it's vulnerable the survivor shouldn't do very much. The first few days after stroke is a time to convalesce. There is a time to add intensity to the recovery effort. But during the first few days, generally referred to as the acute phase, is not when intensity should be attempted. There are more important things to do. Like saving as much brain is possible (the domain of medical doctors).

So what do therapists do during acute phase? Most therapists involved in acute care will tell you the same thing: "We do whatever they can." That is, whatever the patient is physically able to do is encouraged. But there is often not very much the stroke survivor can do. Yet therapy immediately after stroke is generous. There is often hours per day slated for acute care therapy. But that's not when hours are needed. Hours are needed during the subacute phase.

The subacute phase is usually defined as "seven days to three months." But this is actually a misrepresentation. The fact is, like anything with stroke, it's different for every survivor. Each phase, in fact, happens in a different time for each individual survivor. In any case, it's the subacute phase when intensive efforts towards recovery should begin. Yet for many stroke survivors there's actually a reduction in the number of hours of therapy during the subacute phase as compared to the acute phase. In this way, therapy for stroke survivors is upside down.

By: "stroke recovery blog" "stroke blog"

Happy Birthday America!

Lets all take a minute to appreciate what we have and not what we want. To enjoy our freedom and thank the ones who helped us gain it and continue to help us.

Here is one of my favorite American heroes:

But there are many more near and far.

I am not usually all that patriotic but I did purchase a flag to hang on the front of our house recently (made in the USA and about $10 with a coupon). I also need a break from my health issues and the rest of life.

In the know

If you are perpetually sick/ill, you are in the know on how we feel. Someone came up with a list of 20 items but a few stuck out for me.

• You aren't quite sure what it means to feel "100%" because you're usually hovering at a solid 80% on a good day.
• Sometimes doing even the simplest of tasks feels like a five hour workout. Can I nap yet?
• By some miracle if you are actually not sick, you usually overexert yourself so much that you'll be sick again in a matter of days.
• Your immune system feels like its one weekend away from collapsing completely.
• Naps become more important part of your day.
• "You don't look sick to me". No, but my kidneys feel like they're failing so there's that.
• When you finally feel healthy again, it's an emotional experience for you. 

I'm not sure I'll ever hit that last one again but occasionally I can sit still and feel no aches, pains, or anything else for about 30 seconds.... Until I move and then it all starts up again.

And no, if you  haven't walked the walk, you can't tell me how I feel.