Saturday, September 3, 2011

Stronger After Stroke: ............................................... The lost chapter

I'm not sure what it is about the Canadians, but they do great work regarding stroke. There's only about 50,000 strokes per year in Canada (in the US there's about 850,000). But the Canadians put a ton of resources behind it. Plus they have a great back story. Donald Hebb, Wilder Penfield, David Sackett, Dale Corbett, Bob Teasell--  not all of them involved in stroke rehabilitation per se, but all of them have had a huge impact on the discussion.

I did talk up in Canada, last December, in Alberta. Nice little town called Lethbridge. 

Kmsiever at en.wikipedia
 Before you do a talk you have to send your PowerPoint slides to the people sponsoring the talk. And you have to do this pretty early because they need time to make sure that it all prints well, etc. etc. I sent my slides up to this very nice physiotherapist/neuroscience PhD candidate coordinating the talk. She emailed me a few days later... The slides look great, but you have this whole section on this thing... "reimbursement"? Nobody's going to understand what you're talking about.

Grrr. Canada.

It turns out their big problem, in Alberta at least, is difficulty discharging stroke survivors.

Therapist: "Well Mr. Smith, it's time for you to be discharged, you've plateaued." 
Mr. Smith: "I'm not going anywhere, eh?"

It's a good problem to have.

In any case, the point of this blog entry is not to celebrate Canada and its great work for stroke, but to talk about a couple of different Canadian online resources for stroke survivors.

Apparently, I had a chapter in Stronger After Stroke that was deleted by the publisher. All this info ended up in the book, but not as detailed as you will read it, below.

So here it is, the lost Stronger After Stroke chapter!

Stroke Recovery Research Made Quick And Easy 

What is it?
When you had your stroke, you landed a new job: Recovery researcher. Your recovery depends on knowing what the latest and greatest stroke recovery research has to offer. It would be nice if you could lean on clinicians to satisfy your need to know. No such luck. Most doctors and therapists treat many diseases and cannot be expected to be familiar with all the latest techniques, modalities, and technology.

The good news is that hundreds of millions of dollars of funding is being spent on stroke recovery research, around the country and around the world. Some of the best minds in science are coordinating multi-site trials, cutting edge technology and armies of researchers to find better ways for you to recover after stroke. You should benefit from all this expensive creativity and hard work! But in order to benefit from all this research you need to know what it says. The suggestions in this section will allow you to quickly and easily access the latest and greatest stroke recovery research.

How is it done?
Once you’ve had a stroke, you need information. You need it because your recovery is directly related to how well you implement what science develops. But there can be problems getting this information in a form you can use. For instance: 
  • Where do you find the time and the know-how to find accurate and up to date information about the most effective stroke recovery options?
  •  How do you sort through the hundreds of articles that are coming out every month on stroke and stroke recovery?    
  • Even if you can find this information, how will you understand what the researchers are saying?     
  • Is there one simple and easily read resource that tells you what the latest and greatest stroke recovery research says?
Yes, there is!

Dr. Robert Teasell and colleagues at the University of Western Ontario have written a complete and straightforward resource that allows you to get all the up to date information you need quickly and easily. This resource is called The Evidence-Based Review of Stroke Rehabilitation (EBRSR) and can be found on the web at: The EBRSR is a study of all the peer reviewed articles available worldwide. “Peer reviewed” articles are journal articles that are scrutinized by a group of scientists that work in the field of stroke rehabilitation research. These “peers” review the articles to ensure its scientific integrity before they are published. Dr. Teasell’s resource provides a reliable and concise review of all the peer reviewed articles on the subject of stroke recovery. 
 Robert Teasell

The EBRSR has 21 “modules” that cover every area of stroke rehabilitation. Here is a partial list.
  • The arm and hand
  • The leg and foot and walking
  • Speech
  • Outpatient stroke rehabilitation
  • Community reintegration
  • Painful “bad side” shoulder
The great thing about this information is that each module opens with an easily readable list that explains which therapies work, which does not work and which are promising but still unproven. Not only that, but it is updated every 6 months, and it’s free! If you want more than just the “bottom line” these modules have several layers of information including full references to the research articles that are reviewed. The EBRSR is an easy way of accessing the latest and greatest that stroke rehab research has to offer. The EBRSR makes your research as simple or as detailed as you require. If you are willing to spend about 10 minuets every six months you will know more about what the research says about stroke recovery than most clinicians! A lot of healthcare workers don’t know about this resource so the information may be new to them. Remember, clinicians usually treat many problems, not just stroke. They cannot be complete experts because they have limited time to absorb an ever expanding amount of research in all the areas they treat. Knowing what the research says will help you guide doctors, therapists, nurses and other healthcare workers as you work to recover.

There is another fantastic resource for determining what does, and what does not work in the fight for recovery from stroke. It is called StrokEngine. It is produced by McGill University in Canada and includes the work of some of the biggest names in stroke research, including the previously mentioned Dr. Teasell. This resource is updated continually and allows you to explore recovery, therapy by therapy. For instance, let’s say you’ve heard that “therapy X” works helps folks recover. The StrokEngine allows you to look up just that therapy and see if it holds promise. Once you’ve chosen a therapy you can go to a section called “Patient / Family Info”. Once there you can go to a section called “Does it Work for Stroke?” which gets to the bottom line about that therapy. Just like the EBRSR, this resource allows you to look at each item as simply and quickly as you want, but the details are there if you wish. StrokEngine can be found at:

What precautions should be taken? 
Make sure that your doctor reviews whatever treatment options you are implementing into your training program. When considering a treatment option make sure it is shown to be effective in peer reviewed literature.  



Linda said...

Wow Pete.. you hit a nerve with me today Eh?

I will have my last physiotherapy appointment this coming week. Discharge is inevitable at last!

It is not that I have plateaued, and not that I am back to where I once was, but we agree that I am at a spot now where I am able to progress using other community supports and my own knowledge base. Yup I am learning to be a good stroke researcher. (big grin)

I am so grateful that I have had the opportunity to hang in there for as long as I have. I am sure I would never have progressed to the point I am if I did not receive the help and especially direction of my therapists. Plateau's seemed to read... "it is time to try something really different now" so that I could move on ... not as time to give up and accept the situation.

I think if I was left to my own resources I would have been stuck working hard on spinning my wheels in the same spot and not challenged to reach a little further.

I knew about one of the links you shared today but the EBRSR link was new to me. Very good resources but still pretty tough reading.

Thanks Pete for being part of my support and my education!

Peter G Levine said...

Hi Linda,

Great comment, thank you. I disagree that the EBRSR is difficult reading. Some of it, of course, is. But with each "module" they start out with a bunch of bullet points. And those are super simple.

We appreciate your tax dollars educating us all!


garydotgray said...


These are two GREAT stroke research resources. Thanks!

I did notice though that the last update for the EBRSR was Oct 13, 2010. I am wondering if there might be a new update soon.

BTW I recommend your book every chance I get. It is #1 on my stroke survivor recommendations reading list.

Smiles :)

Gary (from Canada eh)

oc1dean said...

After 3 years of compiling my own stroke research I finally may know enough to be my own therapist and have a fool for a patient.

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