On May 4th in their publication Stroke, the The American Heart Association/American Stroke Association (AHA/ASA) for the first time issued guidelines on stroke rehabilitation and recovery. This scientific statement on rehabilitation is the 8th set of stroke guidelines from the American Stroke Association, and these guidelines focusing on recovery are the last of the association’s recommendations for the continuum of care for stroke patients and their families.
Grade the Guidelines
How do you think the AHA/ASA did with their guidelines for stroke recovery and rehabilitation? Do you think they hit the mark or fell short for stroke survivors and caregivers?
I find the new website much more accessible, and there are some new ways you can get involved online. For example, I’ve already registered for their new Stroke Advocacy Network and when you go to the new site you can also sign up for a upcoming free webinar to launch the new network.
Overall, I believe the new site will make it easier for people to get involved in this important stroke education and awareness cause through the addition of the new social media components and better search capabilities. By the way, now you can even easily search for my mobility articles from past issues of their publication, Stroke Smart Magazinehere.
The PFO Research Foundation recently met in Washington, DC for its first PFO Summit. I attended the event and was hoping for both practical and selfish reasons to get some clarity on exercise guidelines from some of the world’s top authorities on PFO. Instead, what I learned in one of the breakout sessions aimed at developing better guideline documents and educational materials for patients with PFO disorders is that we have a great deal more work to do to get better patient information out there. I reference a recent post to my blog from Sept. 28, 2010, at know-stroke.org to illustrate this point:
“I just found out I have a PFO after a cerebellar stroke and ministroke in 27 months. I am 45. Should I be scared to do cardio, how much, how long, what should I avoid? Thanks Dave, I appreciate reading something from someone who seems a lot like me.”
What should this person do? Known PFO, positive TIA/stroke and would like to continue exercising/working out. Is cardio fine? Are weights OK? What about swimming? Climbing at altitude? Diving? We know these situations may present increased risk but where do you draw the line?
Patients are turning to the web and patient forums for guidance clearly because they are not getting answers from their physicians or device manufacturers. It’s simply not enough to tell patients “you can’t avoid the valsalva maneuver*” in daily life. No kidding doc, really? Is that the best advice we can give?
I learned “off the record” after running a marathon that perhaps (running long distances) was not the best decision for me “down the road” with a PFO occluder on board. This inside information was shared with me by a physician recently after my primary cardiac physician had cleared me and stated after more than one year post PFO closure “if my legs could carry me that far and my brain was crazy enough to talk my body into 26.2 miles then my heart would be fine”. OK, so, what is safe? What should PFO patients be doing for exercise (or not doing) 1-3 weeks after closure? How about after 6 weeks? What is really so special about 6 weeks? Why not 1 year (or more)? Should every occluder device have its own post-op protocol based upon the design? Perhaps. What about exercise guidelines for known PFO/stroke confirmed without closure like the recent post on my blog I illustrated above. What about known PFO, no stroke, no closure but enrolled in clinical trial related to migraines? What about guidelines for that same patient sent home on meds or following sham closure procedure. Follow me?
[Personal Sidebar] I had contacted the device manufacturer that built my heart plug several years ago after I had PFO closure. I asked them, -NO-I challenged them to get their patient education website completed and build a useful patient resource to assist patients that were in my shoes. That was well over 3 years ago. The result: Still no website for patient education. Nothing. I’m still waiting…
Who’s to Blame??
Blame the FDA, insurance companies, poor clinical trial enrollment, whatever excuse we want to make, this is certainly not “best medical practice”, it is not acceptable and is in fact poor medical practice. As a practicing physical therapist, if I sent someone home after a total hip replacement and didn’t remind them that there were clear post operative hip precautions that they should be aware of following their procedure (and based upon the technique and specific device they had implanted in their body), I could be fired and sued if they went home and blew out their hip because I didn’t educate them. That is simply part of my job! Why are heart plugs different? The last time I checked they were still being inserted directly in the center of our most vital organ.
“Patients can’t continue to afford to be the pigs here. Patients are literally putting their “hearts on the line” and deserve so much better. When I ran the Boston Marathon in 2009 I didn’t recall any pigs passing me with a clinical trial advertisement on their bib.”-DP Dansereau
I certainly hope this post serves as a challenge to industry and physicians to be more responsible and get our collective acts together to set things straight for patients. At least that is why I continue to write this blog, and yes, industry, this blog creation was and remains my direct response to your failure to step up and do something. Truth is, I write most of my content on lunch breaks and late on Friday evenings after my responsibilities as a dad and business owner are complete. (This is at least my excuse why I frequently have typos in my posts.) I write this blog because in some way it helps patients ask more educated questions and hopefully make their medical care takers stay on their toes, at least that’s what I’ve been told. I have no financial disclosures to report, don’t know any venture capitalists, and have no potential gain if PFO closure proves to be a slam dunk for stroke prevention or migraine relief. I just own the peace of mind that I did something. Now, I must get back to my patients, and then perhaps go out for a run later this evening when I get done here at work.
Or should I ? Who knows? I’d love for you to comment here if you do….
* Valsalva maneuver:A maneuver in which a person tries to exhale forcibly with a closed windpipe so that no air exits through the mouth or nose as, for example, in strenuous coughing, straining during a bowel movement, or lifting a heavy weight. The Valsalva maneuver impedes the return of venous blood to the heart.
This challenging full body lunge exercise provides great balance and coordination retraining follow a stroke
Post by David Dansereau for Know-Stroke.org
This is one exercise I sometimes still visualize in my sleep and continue to work on to improve my balance post stroke. I’ve since been able to give it a boost by trying it with heavier weights, with my front leg on a Total Gym glideboard, and at times even successfully with my eyes closed.
Use caution and modify to your level of fitness / rehabilitation when needed*
Intensity Level: Moderate Difficulty with disc as shown
Lunge with Balance Disc
1) Stand with feet hip width apart. Take leg and step back approximately 2 feet standing on the ball of the foot. Place the front foot on a balance disc (or use the floor without disc for beginners).
2) Start position: Feet should be positioned at a staggered stance with head and back erect and straight in a neutral position. Hold medicine ball in front of your chest for added challenge.
3) Lower body by bending at hip and knee until thigh is parallel to floor. Body should follow a straight line down towards the floor.
4) Return to start position while raising the medicine ball overhead and repeat. Alternate or switch to other leg after prescribed reps.
5)Stroke Rehab Tip: Use a mirror and focus on a central point straight in front of you and always train both sides
*You should follow a rep and set sequence that makes sense for your level of rehab or conditioning. If you are working with a physical therapist or qualified trainer consult with them first about adding this full body balance exercise to your stroke recovery training.
Stroke rehabilitation therapies and modalities for lower-extremity training have indeed advanced in recent years with improved technology. Many of these advances are being driven by what researchers are learning about brain recovery and neuroplasticity. Physical therapists that embrace this concept for stroke recovery now develop rehabilitation protocols and use the same technologies that on many levels imitate conditioning for an athlete post-sports injury or for performance enhancement. For example, motion analysis and capture was a technology formerly reserved for high level athletes, but increasingly PTs are recognizing its power for stroke therapy.
Get ready to do your job
When preparing for lower body conditioning after a stroke it is important to set SMART goals. Once goals are set, the mindset (or work ethic) of the stroke survivor must mirror that of the athlete. Athletes perform purpose driven exercise and as a stroke survivor so should you. Don’t forget, stroke recovery is your job.
There are three qualities that all top athletes (and stroke survivors) share when preparing for their training (and stroke recovery):
1) Acquire a strong desire to succeed and are passionate about their goals
2) Open minded attitude about how to develop skills to do the best job possible
3) Movement (or exercise strategy) has purpose towards their goals
If you don’t have access to the new stroke therapy technologies, don’t get discouraged and quit your job. Know that traditional strength, balance, and gait training on land or using treadmills and other tools are still very effective. With and without the use of assistive devices these methods have proven to get results for stroke survivors that are motivated to get the job done. If you desire to get back your independence and confidence, the most important factor in any exercise program is compliance. It doesn’t matter if you paid thousands for your home exercise equipment , robotic device or functional electrical stim unit or you simply invested just a few dollars on an exercise ball, band or tubing. What matters most is that you use it regularly and with purpose.
In today’s changing healthcare system with lowered reimbursements and shorter treatment times, emphasis on home-based training continues to increase. It’s important for the stroke survivor to understand the importance of continuing with the appropriate exercise prescription for their own condition to ensure effectiveness and maximize functional outcomes. It is your job to put in the time to recover to your fullest. Do your job!
Home-based Exercise is Your Job: Here’s how to make it simple to get started
Elastic resistance or exercise tubing is ideal for the home setting because of its portability, cost and effectiveness (yes, even elite athletes use it because it works!). Several accessories are available to assist home exercisers, such as exercise handles, door anchors and portable gyms and flexibility tools. For more information on effective home resistive exercise programs using a thera-ball, bands or to locate inexpensive home gym essentials visit my-physical-therapy-coach.com and click on the Stroke Coach and Exercise Coach links
Article Adapted from David’s Smart Moves Stroke Recovery Guidebook available Jan 2010
1 Stroke Smart Nov/Dec 2008 issue. 2008 The year in Review: Research and News that will change the face of stroke
2 Motion Analysis Corp (www.motionanalysis.com)
The MotionMonitor™, by Innovative Sports Training (www.innsport.com)
3 SMART Goals article for Stroke Smart by David Dansereau