nanoparticles and stroke rehab

Since I think too much about all things stroke related I came across nanoparticles and tried to envision what use they could be for stroke rehab.
They have several interesting abilities;
1. They can cross the blood-brain barrier
http://www.ncbi.nlm.nih.gov/pubmed/16154222
2. They are already used to treat thrombi in parts of the body.
http://www.springerlink.com/content/vj1528n166147410/
3. They can be magnetically directed.
http://www.redorbit.com/news/video/health/4/magnetic_nanoparticles_remotely_control_neurons_and_animal_behavior/32320/
For our purposes they could be used to deliver a clot-busting drug directly to the clot using the magnetic properties to guide it. And since the amount could be sized to the clot size the risk of bleeding could be lowered significantly and the 3-4.5 hour window for tPA ignored.
The more interesting delivery mechanism would be to deliver neuronal growth factors, c3a peptides and NOGO receptors to the penumbra and dead brain areas. Or deliver stem cells to the most likely place for them to survive and start working.
And after we deliver these growth factors or stem cells we can use connectomics to find out if they are working as we expected.

This could be incredibly useful for those who need some magical properties in order to recover, not all of us are willing to spend the rest of our lives working on recovery or have the mental cognition to understand the work needed to recover.

stroke guidelines around the world

best practices in stroke rehab
Canada has several
Strokengine
http://www.strokengine.ca/index.php
http://www.strokebestpractices.ca/
Canadian Stroke strategy for 2010
http://canadianstrokestrategy.com/
Australian stroke strategy
http://www.strokefoundation.com.au/images/stories/stroke%20support%20strategy%20low%20res.pdf
Britain stroke strategy
http://webarchive.nationalarchives.gov.uk/+/www.dh.gov.uk/en/Healthcare/Longtermconditions/Vascular/Stroke/DH_099065
Stroke guidelines of the Royal College of Physicians
http://www.nice.org.uk/nicemedia/live/12018/41363/41363.pdf
Scottish Intercollegiate Guidelines Network
http://www.sign.ac.uk/pdf/sign118.pdf
And what the World Stroke Organization lists as international stroke guidelines for countries.
http://www.world-stroke.org/guidelines_hb02.asp
You will notice that the United states doesn't even have an entry
One would think that the WSO would put together a single guideline but that obviously will not occur until a survivor gets in power in the WSO.
Most of these have probably been put together with limited survivor input so take them with a grain of salt.
If your country has some please post them in the comment section.

late start to stroke therapy ok

http://www.medgadget.com/archives/2010/04/robotassisted_post_stroke_therapy_beneficial_even_for_late_starters_1.html
A late start to stroke therapy has been thought to be detrimental to getting much benefit out of it, so exercises must begin as soon as possible. A new study, published in the New England Journal of Medicine, has now shown that even late starters can see substantial improvement when using robotically assisted therapy.
This belief is represented in most stroke associations and doctor/therapist statements. I don't believe this is limited to only robotically assisted. I bet it takes 10-15 years before this statement shows up in these places and 30 years before it is taught in schools. So now when you see articles extolling starting therapy immediately reply to them and quote this article back to them

Stroke blogging - do it now!

Start your own stroke blog. Stroke survivors as a whole are invisible, we need to change that.
http://www.baltimoresun.com/news/opinion/oped/bs-ed-stroke-20101028,0,4151798.story I don't want to find out 20 years from now that survivors still do not have a voice in their stroke associations and a way to direct where the future of stroke rehab leads.
Even if all we do is document our own case study that can immeasureably help another survivor.
You can create one here on Google, just click on the CreateBlog link at the top of this blog. Its free and I am sure there are other sites that allow free blogging.
Create a Blog for Free
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Pictures, text, privacy controls
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http://www.experienceproject.com/
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wordpress.com/

When you have created one and posted a few entries please send me a link. I want to see thousands/millions out there. If it is not in English please tell me what language it is in. I will add yours to my blog list for others to find. If you want to be found by google read my posting on how to stay informed of stroke rehab


Do it now!!!!!!!

caffeine and stroke/alzheimers risk

I was having an Q&A at a stroke forum on Alzheimers and the worry was getting it and what possibly could prevent that from happenning. I responded with this research.

Caffeine Treats Alzheimer's?
http://www.everydayhealth.com/alzheimers/specialists/coffee-for-alzheimers-prevention.aspx

This just came in.
Upping your coffee intake 'doubles the risk of a stroke'
http://www.dailymail.co.uk/health/article-1337684/Upping-coffee-intake-doubles-risk-stroke.html?ito=feeds-newsxml
or if you're a woman can coffee cut a womans stroke risk?
So do you want to prevent Alzheimers but have the greater possibility of a stroke? In my opinion/case my stroke was not a bleed so I will take the extra risk, anyway I need the caffeine in order to function during the day. This is the perfect question to ask your doctor and see if they are following the latest news. Depends on which research you believe in.

REM sleep and stroke fatigue

A theory of mine, I don't think I have dreamed since my event and was wondering if that was causing some of my fatigue. As the episode Night Terrors in Star Trek Next Generation shows what happens when you don't dream. Please respond if you have or have not dreamed and list the fatigue you have. I can easily fall asleep anytime during the day even with 12 hours of sleep.
SYMPTOMS: A person lacking REM sleep will show all the general symptoms of sleep deprivation, such as reduced productivity in the workplace, daytime sleepiness, and not handling stress well. Losing REM sleep makes people more sensitive to pain, too. In addition, REM sleep seems to be necessary for verbal skills. A lack of it will cause a person to not be as creative in using language, and they will not do too well on language tests.
As both these articles state; The success of a stroke patients rehabilitation plan is heavily dependent on sleep.
http://strokerehabonline.com/2010/06/sleeping-and-sleep-for-stroke-recovery-speed-up/comment-page-1/#comment-503
http://ezinearticles.com/comment.php?Sleep-is-an-Important-Aid-to-Stroke-Recovery&id=3866857
What are your dreams like and do you have them? Do you dream pre-stroke or after stroke abilities?
I have now changed both my zocor and zoloft from evening meds to morning meds and I now dream. Don't do that without your doctors ok.

bowling and stroke rehab

Today our unit at work had a bowling outing. I had not done this since my
event and my main worry was needing to ask a co-worker to tie the bowling
shoes. Luckily that wasn't a problem because they had velcro straps.
Bowling went fairly well. I would limp/shuffle to the line and just use
arm motion to throw the ball. By the time I planted my left foot there
was no momentum to my swing. I started out with a 15lb. ball but that was
too heavy, so I managed to get a 13 lb. ball instead, lighter ones are
obviously meant for smaller fingers. Scores were 124, 119, 113 about 10
points less than pre-stroke. All-in-all a successful outing, I'll have to
do it again.

split-belt treadmill and stroke rehab

Physical Therapists Use A Split-belt Treadmill To Help Stroke Patients Walk More Easily
The other problem is that it looks like it will be very expensive so that few clinics will be able to afford them, similar to Lokomat training. Luckily I moved to a clinic with the Lokomat and thought that using it was probably the most helpful in getting somewhat of a normal gait.
When the legs move at speeds different from one another, the brain receives an error signal and the brain and nervous system use the feedback to adjust. The cerebellum recalls this message even after the treadmill stops and for a few minutes, stroke patients can walk easier.
Split-belt treadmill training poststroke: a case study.
BACKGROUND AND PURPOSE: Even after rehabilitation, many individuals with strokes have residual gait deviations and limitations in functional walking. Applying the principles of motor adaptation through a split-belt treadmill walking paradigm can lead to short-term improvements in step length asymmetry after stroke. The focus of this case study was to determine whether it is possible to capitalize on these improvements for long-term gain.
CASE DESCRIPTION: The participant was a 36-year-old woman who was 1.6 years poststroke. She had a slow walking speed and multiple specific gait deviations, including step length asymmetry.
INTERVENTION: The participant walked on a split-belt treadmill 3 d/wk for 4 weeks, with the paretic leg on the slower of the two treadmill belts. The goal was 30 minutes of split-belt treadmill walking each day, followed by overground walking practice to reinforce improvements in step length symmetry.
OUTCOMES: With training, step length asymmetry decreased from 21% to 9% and decreased further to 7% asymmetry 1 month after training. Self-selected walking speed increased from 0.71 m/s to 0.81 m/s after training and 0.86 m/s 1 month later. Percent recovery, measured by the Stroke Impact Scale (SIS), increased from 40% to 50% posttraining and to 60% 1 month later.
DISCUSSION: Improvements in step length symmetry were observed following training and these improvements were maintained 1 month later. Concomitant changes in clinical measures were also observed, although these improvements were modest. The outcomes for this participant are encouraging given the relatively small dose of training. They suggest that after stroke, short-term adaptation can be capitalized on through repetitive practice and can lead to longer-term improvements stroke.

There should be a way to duplicate this without having the split-belt treadmill but no one will research this since nothing could be sold as part of it.

student doctor network and stroke knowledge

This was from the student doctor network

I've found plenty of TBI and SCI textbooks but was wondering if anyone knows of a good stroke rehab textbook, or do they not exist?
http://forums.studentdoctor.net/showthread.php?p=10337446#post10337446

Boy is this disgusting, our doctor instructors don't even have good textbooks. here was my reply;

as a stroke survivor, I've spent years looking for decent stroke rehab information. Personally I don't think it exists. Actually there is one book that is good; Stronger After Stroke by Peter Levine Go to any of the stroke forums and it is obvious that survivors are not given any useful information. Therapists don't know any basis for their treatment.
http://informahealthcare.com/doi/abs/10.3109/09593989409036399
As in the Swedish study, although the respondents were able to describe their treatment choices, they had difficulty explaining the underlying theoretical basis for their choice.
All I can say is that you had better not get a stroke because no one can tell you anything useful.


The World Stroke Organization is trying but we are 2400 years in the past when Hippocratic dictum that ‘It is impossible to cure a severe attack of apoplexy and difficult to cure a mild one’
Good luck you have reached the black hole of stroke knowledge.
To stump your teachers ask for the difference in therapies needed for penumbra damage vs. dead brain damage. I opine at www.oc1dean.blogspot.com, try not to be offended by my postings.

God, our doctors know nothing, our future doctors will know nothing, our therapists don't have any basis for their treatment. When will someone actually take charge and learn something about stroke rehab?

PT forums and stroke rehab

I read PT forums. This one on stroke rehab was appalling.
http://www.physiobob.com/forum/neuro-physiotherapy/4992-stroke-rehab.html
The posting has been deleted but the following was copied before it was gone. I guess criticizing PTs is not allowed.

Dear fellow physios,

i think i need a helping hand with a stroke patient.

He has had a RIGHT CVA about 20 days ago. Unfortunately, they let him go from hospital 10 days after the stroke.

I started seeing him last week and has no movement at all on LEFT arm.I read that no shoulder shrug or finger movements are not good prognosis.I am using electrical stimulation, massage with a brush, passive movements and PNF patterns to re-learn the movements.Last Monday he had spontaneous adduction of LEFT SHOULDER that's gone again.Do you think his arm will recover?

As for his LEFT LEG, he has no control of knee extension.How can we manage locking of the knee?

Thank you all

Not a single one of the answers even suggested that they look at the brainscan or diagnosis to see if the functions they were trying to get the patient to do were even possible. Every answer just assumed that all they had to do was to tell the patient to move this way and if the patient couldn't do that, well then obviously the patient is slacking. As Charlize says,'All you have to do is raise your voice'. Boy what lack of knowledge. This corresponds to my earlier post on theoretical basis of stroke rehab.
You will also notice that this PT is still under the impression that immediate therapy is required. See this for the latest;
Late start to stroke therapy

I haven't quite decided yet if I should stick my neck out and take them to task, if I do I will create another id because that reply would probably get me kicked out.

Plugged arteries to the brain - Stroke risk

I have probably answered dozens of questions like this on stroke forums. The medical staff is doing a lousy job explaining this.

Your doctor is quite remiss in not telling you about the physiology of the brain. There is a Circle_of_Willis that supplies blood to the brain. That is fed by four arteries, two carotid and two vertebral. Just because one or more arteries are blocked does not directly cause a stroke. The usual case is that the narrowed artery tears, clots and the clot lets go, traveling to the brain. You normally do not clean out a totally plugged artery because of the high risk of sending debris to the brain. I had a totally blocked right carotid artery for four years now and I don't worry about getting a stroke from that. Ask your doctor about this to see if s/he understands basic brain matters. I have heard of survivors who developed feeder arteries around the blockages.
But then I am a stroke-addled survivor, so don't listen to what I have to say, your doctor is infallible, listen to them.

2010 top stroke blogs

From Licensed Practical Nurse -  no longer running these awards

Know-Stroke.org http://knowstrokeblog.my-physical-therapy-coach.com/

Surviving a Strokehttp://survivingastroke.blogspot.com/

The Stroke Recovery Blog http://recoverfromstroke.blogspot.com/ Peter Levines' blog, read all of his posts they're better than mine

Barb’s Recovery http://barbpolansrecovery.blogspot.com/

Recovering Stroke Survivor http://lori-recoveringstrokesurvivor.blogspot.com/ I'm not sure what language this one is in but I'll figure it out eventually.

Stroke of Faithhttp://stroke-of-faith.blogspot.com/

So what are you doing reading this one?

Array tomography and stroke research

This along with the wiring diagram of the brain seem like useful tools for researchers to figure out what occurs during neuroplasticity and neurogenesis of stroke rehabilitation.
My initial reading of this assumes that the mouse is alive when doing this scanning.
Touring Memory Lane Inside The Brain

This is obviously something I as a non-scientist should not even be suggesting as a use for this.

men and drinking, nothing on stroke rehab

"it was a woman that drove me to drink and I forgot to write and thank her"
W.C.Feilds

“Men are like a fine wine. They all start out like grapes, and it's our job to stomp on them and keep them in the dark until they mature into something you'd like to have dinner with.”
Kathleen Mifsud

Okay, brain. You don't like me, and I don't like you, but let's get through this thing and then I can continue killing you with beer.
Homer Simpson

Bart, a woman is like a beer. They look good, they smell good, and you'd step over your own mother just to get one!
Homer Simpson

Instant decrepitude and stroke effects

 I originally thought I would become decrepit over many years. But no, I hit the wall at age 50 with my stroke. Now I am spending years to get back to some semblance of normalness so I can work on becoming decrepit over many years like I thought would originally happen. As someone said to me. 'You hit a pothole in the road of life'. Actually it turned out to be a sinkhole that swallowed me.  Yes, but I am fixing the flat in preparation for 40 more years and rebuilding the car besides. And I will go speeding down that road again.

What therapy-exercise worked best for your stroke rehab?

Therapists ask me what therapies have worked in my rehab. I can understand why because they want to add that therapy to their roster of abilities.

Survivors ask me what exercises worked in my rehab. They are hoping that if they can just find the right exercise to do they will recover.

Both of these questions are invalid because the first thing to understand is how recovery occurs and where you are in the process. Until you know that can you select a therapy or exercise to work on. If you are working on penumbra recovery in the first 6-12 months then you take the little pieces of movement you do have and keep extending them longer and farther. If you are trying to get back functions that were in the dead brain area then you need to work on neuroplastic therapies that move those functions; try passive movement, mental imagery, thermal stimulation, action observation. All of these are discussed in other posts on my blog.

Until we get the whole concept of what needs to be done to recover changed from this specific therapy or exercise will we finally come up with a therapy model for stroke rehab. So don't enable the doctors and therapists by accepting a therapy or exercise without them specifying how it meets the protocol of recovery. See my blog on restructure stroke rehab model and theoretical basis of stroke rehab for my ideas. I actually think they are pretty good.

No boundary stroke rehab

I loved this, it came from from penngwyn on stroke network.


But the reason I mention that here is that one of my classmates was a doctor who turned out to be a specialist in rehabilitation. He told me that in his experience, the most powerful tool in recovery/rehabilitation was to convince ones brain that there was no boundary, no impairment or limitation. "Act like you can do everything, and your brain and body will find ways to make it work." he said.
This corresponds to a saying that is engraved on a plaque above my wifes' desk.
'What would you attempt to do if you knew you could not fail?'

Wiring diagram of the brain

This sounds like something every stroke researcher should be doing after the protocols they are testing, mainly to figure out where the changes are occurring. The other thing to work on would be to find those survivors that have completely recovered and scan their brains with this to find out where neuroplasticity has moved the dead functions. If only I could figure out a way to get this type of question in front of those stroke researchers. If anyone has a clue please email me. I will stick my neck out to anyone including the stroke associations.
A Wiring Diagram of the Brain
New technologies that allow scientists to trace the fine wiring of the brain more accurately than ever before could soon generate a complete wiring diagram--including every tiny fiber and miniscule connection--of a piece of brain. Dubbed connectomics, these maps could uncover how neural networks perform their precise functions in the brain, and they could shed light on disorders thought to originate from faulty wiring, such as autism and schizophrenia.
The brain is essentially a computer that wires itself up during development and can rewire itself," says Sebastian Seung, a computational neuroscientist at MIT. "If we have a wiring diagram of the brain, that could help us understand how it works." For example, scientists previously identified the part of the songbird's brain that is important in the birds' ability to generate songs. Seung would ultimately like to develop a wiring diagram of this structure in order to elucidate the features underlying its unique capability.
I know this is probably decades away but if we(survivors) don't start putting future goals out there like President Kennedy did for the moon landing we won't ever get there. Stay tuned, I'll figure out some way to get a set of goals started.
I  sent an email to Mr. Seung thanking him for his work on this and pointing out the usefulness of using this for stroke rehabilitation research. We have to get stroke  rehab research in front of everyone possible so if you see an opportunity to suggest something that may help  stroke research please point it out to the persons involved. The squeaky wheel does get oiled and I plan on screeching like Red River oxcarts.

Interviewing your stroke rehab doctor

When you interview the doctors here is a good set of questions to ask them. Remember they are working for you so you need to find out how good they are. You can modify them slightly for your therapists

1. How many patients has he/she seen fully recovered and what did they do to recover? This is not the ADL recovery.
2. What has been done and still needs to be done to prevent another stroke?
3. What area of the brain was disabled by the stroke? What functions did they cover?
4. What type of stroke, clot or bleed? Show me a 3d map.
5. How big was the penumbra? What areas did it affect?
6. What clinical trials are going on right now that the patient would be a good candidate for?
7. What treatment options have been discovered in the last 5-10 years for stroke rehabilitation? Of these options which ones are available in your clinic? This is to determine if he/she is up-to-date or if you will have to do all this research yourself.
8. Who are the best therapists working in your clinic for stroke rehabilitation and why do you consider them to be the best?
9. Who do I work with if depression takes hold?
10. What books on stroke recovery do you recommend? I recommend Stronger After Stroke by Peter Levine and healing into Possibility by Alison Shapiro
11. What stroke related magazines do you recommend?
12. What internet sites do you recommend about stroke? There are at least 15 stroke forums out there. If Canadas' Strokengine is not mentioned I would ask why.

For therapists -
1. What is the theoretical basis for your therapy recommendations?
2. Have you mapped the damage as seen from my scans to your therapy recommendations? Why not?

As always make sure you ask your doctors for permission to ask these questions of your doctor. Circular reasoning is great unless this is a Mobius strip. Be careful that you don't fall off the strip when it turns upside down.

Is your stroke rehab half-full or half-empty?

I use this analogy in some of my posts and just today I was discussing this very topic with the owner of the lunch spot I was at.  The best comment I can give you is something my OT said to me. She said I was looking at my abilities all wrong, I was looking at what I could do the days before my stroke and comparing my current abilities to that. She was looking at my abilities in comparison to the first day she saw me lying paralyzed in a hospital bed. Her
viewpoint was that my glass was half full whereas my view was that the glass was half empty. I'm not a type A personality but all my planned recovery points were never met but I do feel more positive about my recovery because I try now to see how far I have risen rather than how far I have yet to go.
I try now to look down to see how far I have climbed rather than always looking ahead to see what is left to climb.
But hey, what do I know. Your psychiatrist should be doing this type of analysis, so ask them. Onward and upward my happy pills are coming. Woo hoo.
 This is a T-shirt from
http://www.snorgtees.com/t-shirts/technically-the-glass-is-always-full

My Background story

I fell down walking across the bedroom floor that morning, May 21, 2006. I called to my wife, Sarah asking for help to stand up. She was already on the phone dialing 911 and answering the questions, drug use, high blood pressure, diabetes, overweight, All were negative. The paramedics came and asked the same questions mainly because there was this healthy looking 50 year old lying on the floor with some stroke symptoms. I spent the next 4 weeks in HCMC - Hennepin County Medical Center. In the Emergency room I received tPA, the clot busting drug,within the hour. I did not get the immediate miracle so the doctor said I would have to settle for the slow miracle recovery. I had Physical, Occupational and Speech therapy while there.Deficits from the stroke were left side paralysis. Mental cognition, eyesight and speech were not affected. By the time I left the hospital I could walk with a 4 point cane and AFO - Ankle Foot Orthotic. This occurred the day after returning from a strenuous 6 day whitewater canoeing trip on the Dog River, Ontario(23 miles and dropping 1050 feet with a 1.5 mile portage around a 120 ft. waterfall) and driving for 12 hours to get home. So the timing was fortuitous that I was at home when it occurred, (This website contains a slide show of a small part of the photos from that trip; http://www.rapidsriders.net/gallery2/main.php and then click on Album Dog River 2006, I am in the red canoe, my partners were Alan Faust in the purple canoe and Brian Johnston in the yellow canoe). My doctor speculated that I probably had a weak spot in the carotid artery and it was just a fluke occurrence. A later doctor speculated that plaque lifted up and tore. I don't believe I hit or twisted my neck hard enough on the trip to cause the tear. Update from April, 2008. I just had an ultrasound done and the artery that tore is now totally blocked, so I don't have to worry about that particular section anymore. There are three other arteries feeding the Circle of Willis so it still gets enough blood.
Check out my MRI pictures lower in the blog and ask your doctor to see yours, at least 1 week after the event.
I have become fanatical about learning about everything to do with stroke since there is no one in the world that seems to know very much about it. A lot of this is to not have new survivors have to go thru the same 3 year learning process as I did.

emails to the NSA - stroke rehab failures

I sent a couple of emails to NSA - National Stroke Association. None of them were answered.
This one to James Baranski - president, you can find his email address on the http://www.stroke.org/ website if you want to try and get a reply. This was after sending him an email about how directors were chosen

Mr. Baranski,
It was nice chatting with you yesterday. I was expecting a callback from a minion proposing that I go to a stroke group. Thanks for listening and while I have your attention a few words on survivors. I think there are two categories of survivors, those who have accepted their limitations and are just trying to get thru the rest of life, and those like myself who are very cognitive and want detailed information of what can be done to get back to real life. Your organization seems to focus on the first group who are satisfied with the social aspects of a stroke group.
My vision of what stroke rehab looks like this; During the acute stay at the hospital patients are given a description of what their infarct looks like, showing them a model of the brain and pointing out where the epicenter was and what the size of the penumbra is. Then being told which areas were affected (motor control of arm/leg, sensation in these areas, etc.).From there being told of the penumbra area that was affected and the fact that that area will normally recover in 6-12 months because it was just knocked unconscious. Then going on to explain what is being done to prevent a second stroke, anti-coagulants, clipping or glueing, etc. Next they are told about the therapies that are possible even if no movement is possible.
Music therapy - http://www.sciencedaily.com/releases/2008/02/080219203554.htm
Kenny Rogers Music Second to None at Healing Stroke Victims
More research on music listening for the early part of stroke recovery.
http://www.prefixmag.com/news/kenny-rogers-music-second-to-none-at-healing-strok/27242/
Personally I don't think I could have done this.
****Passive movement - This has recently been found to be useful in starting neuroplasticity
http://www.ncbi.nlm.nih.gov/pubmed/15003755
The effects of repetitive proprioceptive stimulation on corticomotor representation in intact and hemiplegic individuals.
****Muscle vibration may enhance controlled movement in people with central motor disorders, pg. 787
Journal of Rehabilitation Research and Development Released: Wed 10-May-2006, 00:00 ET
****Mental imagery - some studies are listed here, I don't have direct access
Using Motor Imagery in the Rehabilitation of Hemiparesis , .
Archives of Physical Medicine and Rehabilitation , Volume 84 , Issue 7 , Pages 1090 - 1092
J . Stevens
Mental imagery for promoting relearning for people after stroke: A randomized controlled trial1 , *1 .
Archives of Physical Medicine and Rehabilitation , Volume 85 , Issue 9 , Pages 1403 - 1408
K . Liu , C . Chan , T . Lee , C . Hui-Ch
Mental practice and imagery: a potential role in stroke rehabilitation. Author's reply
R VAN LEEUWEN, JT INGLIS, J RAVEY - Physical therapy reviews, 1998 - cat.inist.fr
****Mirror-box therapy
Rehabilitation of hemiparesis after stroke with a mirror
Altschuler EL, Wisdom SB, Stone L, Foster C, Galasko D, Llewellyn DME, Ramachandran V
The Lancet - Vol. 353, Issue 9169, 12 June 1999, Pages 2035-2036
I assume you have at least one employee who is keeping track of all the research out there and is providing this to all of your employees. I am very limited since I can only see the abstracts and have to assume what the protocols might be. This would be a major help for the clinicians and the survivors if there was a central place where research was commented on and follow-up interviews written up.
The next topic to be given to survivors is everything that is known about neuroplasticity. Basically that your recovery up to 6 months is spontaneous recovery from the unconscious brain cells waking up. Any recovery past that(and it can take years) will be due to retraining other parts of your brain to take over. This does mean that the survivor will need to become insane because neuroplasticity requires that hundreds of thousands to millions of repetitions are needed to accomplish it.
Albert Einstein has a quote 'Insanity: doing the same thing over and over again and expecting different results.' Does this imply that all stroke survivors that believe in using neuroplasticity are insane for that belief? Or should we just ignore Einstein because we are smarter than him?

One last item,
The NSA seems to be geared toward providing information to medical staff and then hope that they provide that information to survivors. This is proven by your Stroke Center Network (SCN) A program of National Stroke Association. SCN is a membership program for hospitals, specifically stroke teams, dedicated to advancing stroke care at their facilities. Survivors cannot join this, I tried and was specifically told no.
This focus is completely wrong. THe NSA should provide the information to the survivors and caregivers. Like the breakfast saying for bacon and eggs - the chicken is involved but the pig is committed. The medical staff is involved but the survivor is committed. By changing the focus to the survivor, the survivor will make sure that the medical teams know what the possibilities for rehabilitation are out there and force the medical staff to keep up. The current situation of the NSA working mainly with doctors has been proven to be ineffective. Just go to any one of the websites and see how many times the survivors ask, 'My doctor told me I wouldn't recover, what can I do?' And immediately another survivor will reply, 'Don't listen to your doctor. I recovered quite well. Get another doctor that actually believes in helping you recover.'
This closely follows what my doctor did, which was to tell me nothing about rehabilitation, I'm sure by now I know more than he does. I think my doctor still believed in the Hippocratic dictum that ‘It is impossible to cure a severe attack of apoplexy and difficult to cure a mild one’
I assume you have a vision or strategic person in your organization who should be thinking about these things. If not, a real cognitive recent stroke survivor would be glad to provide input on a 5 to 10 year plan. I have met numerous survivors that fit the bill.
I have numerous ideas of what stroke research should be done.
Curriculum input for doctors and therapists in college should be a focus and retraining of existing medical staff is necessary.
A stroke rehabilitation textbook would be a good first step.
I have numerous other opinions but this will do for now.
Thanks for your time,
Dean Reinke

This one to James Baranski again

Why can't the NSA provide something similar? From the British Stroke Association. I can't even find any research information on what the NSA funds/supports. Their way of contacting them is much more user friendly.
http://www.stroke.org.uk/contact_us.html. Sorry about the critique but there seems to be no other way to let you know that your organization is completely failing in your mission statement.
"We provide education, services and community-based activities in prevention, treatment, rehabilitation and recovery. National Stroke Association serves the public and professional communities —people at risk, patients and their health care providers, stroke survivors, and their families and caregivers." bolded are my emphasis.
Your Clinical Trials Resource Center doesn't give any useful information.

This one to James Baranski and Taryn Fort, also at the same website.

I am really disappointed that the AARP magazine had an article on Brain Health that mentioned neuron growth before NSA had any information on it. While they didn't use the word neurogenesis, they did mention growing new brain cells. This is symptomatic of the lack of leading edge knowledge distributed by the NSA to survivors. I can't talk about what you distribute to medical staff. I also did not see anything your org has produced on NOGO growth receptors or C3a peptides for generation of new nerve cells.
In general I don't see any 5,10,15,20 or 25 year strategies. Do you not have anyone keeping track of the latest in research? Someone in your organization should have recommended all staff read the book by John J. Ratey, MD, author of Spark: The Revolutionary New Science of Exercise and the Brain.

This was also not replied to. I would at least expect a Thanks for writing brush off. This is completely pathetic. You could try sending an email to stroke@stroke.org but those are never answered. It feels like David and Goliath and you know who won that one. Brushing me off was completely the wrong thing to do.

restructure stroke rehab model

My other thoughts on what needs to be done is restructure the way stroke information is provided. Currently it goes to the medical professionals in the hope that they will give it to the survivors and caregivers. That model is obviously not working as evidenced by the numerous stroke forums out there and all the unanswered questions being asked. Like the breakfast saying for bacon and eggs - the chicken is involved but the pig is committed. The medical staff is involved but the survivor is comitted. By changing the focus to the survivor, the survivor will make sure that the medical teams know what the possibilities for rehabilitation are out there and force the medical staff to keep up. On a similar vein there needs to be an accounting of all the various stroke rehab options out there and see what their efficacy is so we can decide what we want to try. As far as research is concerned, there should be a 10-20 year longitudinal study following the survivors seeing what works and what doesn't, very boring research but we need facts. In 2400 years we have not come very far as this Hippocrates saying demostrates. Hippocratic dictum that ‘It is impossible to cure a severe attack of apoplexy and difficult to cure a mild one’ .

Once again I am trying for an impossible task, it will just take a little longer to accomplish.

getting blackballed from stroke forums

As soon as I got home from the hospital I started particpating in stroke forums. First as a lurker, sometimes asking questions and eventually becoming a prolific poster of answers. This behavior got me kicked off of several forums for not following their rules.
Health Boards, ejected, No website with a forum is allowed to be posted
WEMove, warned because posting a link to a .com website.
MedHelp, warned because posted complete article, inluding attribution, copyright rules.
Stroke Survivors Advocacy Network, ejected, I think this was because I was emailing James Baranski - president of the NSA - describing how badly the NSA is missing its mission. That somehow got to the creator of the network and I was blackballed. 3 months later I tried logging in again and it worked, but my pictures and blogs were deleted, leaving my messages and some discussions intact. Well I won't be gracing them again.
I haven't given up. These are just minor irritations, they seem to have no concept of how easy it is to get an email address.

If they truly wanted to help survivors they would figure out a way to handle these minor problems. So I created this blog where I can spout off to my hearts content. So far the feedback has been good. I had saved most of my best postings and have recreated them here.

Study reveals why brain has limited capacity for repair after stroke

I couldn't tell from reading this if this doesn't apply in my case since I am 4.5 years post-stroke but maybe it could help in the hospital stage.
Study reveals why brain has limited capacity for repair after stroke

sleep enhances motor memory post-stroke

I wish they would write this stuff in understandable English. Even a careful reading did not give me any clues as how to use this knowledge to help my recovery.
Sleep Enhances Motor Skill Learning and Memory Consolidation

I do wonder about the comment in this paper that
Sleep is important for motor learning and memory
consolidation in young neurologically intact individuals
but not for older individuals. What is the definition of an older individual?
I did like these final comments
•Clinical Implications:
• May lead to an emphasis on the need for sleep
between therapy sessions (I did that in 10 minutes)
• Address underlying sleep disorders - my sleep apnea was never found during my stay at the hospital

I did email one of the authors asking about what young meant but no reply

Theoretical basis of stroke rehab

 And we wonder why there are so many stroke forums and websites set up by survivors trying to understand stroke rehabilitation. I doubt the US is any better, no survivor has ever posted any understanding by their doctors or therapists on stroke rehab.
http://informahealthcare.com/doi/abs/10.3109/09593989409036399
As in the Swedish study, although the respondents were able to describe their treatment choices, they had difficulty explaining the underlying theoretical basis for their choice. Difficulty providing a scientific and rational explanation for intervention may have implications for the future development of physiotherapy as a clinical science.
In a survey of Swedish physiotherapists working in neurology, the treatment of individuals following stroke was found to be essentially praxis-oriented (What?)(Nilsson and Nordholm, 1992). The present study replicated the Swedish survey in order to compare the responses of Australian physiotherapists with those of their Swedish colleagues. The questionnaire, designed to establish choice of treatment, factors influencing and theoretical bases for the choice of treatment, and attitudes towards new methods, was sent to the 331 members of the Neurology Special Interest Group of the Australian Physiotherapy Association. The response rate was 72%. Respondents viewed experience working with patients as the most important factor influencing current choice of treatment. As in the Swedish study, although the respondents were able to describe their treatment choices, they had difficulty explaining the underlying theoretical basis for their choice. Difficulty providing a scientific and rational explanation for intervention may have implications for the future development of physiotherapy as a clinical science.

This study comes to the same conclusion Determinants of research use in clinical decision making among physical therapists providing services post-stroke: a cross-sectional study

We're screwed, doctors say they know nothing, therapists don't have any basis for their therapies. We are all completely on our own. I think we are all going to have to go to medical school ourselves. Wait, that won't work either, the instructors probably don't have any clue either. Ok, survivors set up their own school and training and we get medical staff to pay us for our knowledge in stroke rehab.

And I bet I have a better understanding of the theoretical basis of stroke rehab than those physiotherapists. Read my posting on What my doctor should have told me about stroke recovery

triking and dangerous stroke rehab

When I went looking for a trike, after 1 year 2 months, my choices were a cool looking recumbent or the staid upright. I really wanted the recumbent because it looked cool and fast and nothing I was doing anymore was fast.
But there was no way  I could hold my left foot on the pedal unless I wanted to get biking shoes with the builtin clips and the pedals to go with. And since I can't tie shoelaces that ruled this out.  So I got the staid one.
This is an upright trike with the huge basket in back. Talk about feeling ancient. I took it out on the bike path that runs along the West River road in front of our house. I got about 100 yards down the bike path when  I tipped the trike over. So Emma went back home for elbow pads and bandaids. It comes with a coaster brake, single speed, and a single brake lever for the front wheel on the right handlebar.  With 20+ years of  bicycle commuting I figured I knew how to ride, but I needed to unlearn the idea of turning the bike by leaning and also to relearn how to use the coaster brake. From one of the websites selling 3 wheel adult trikes comes this quote.'Enjoy cycling without the need to balance'.  I think for those of us who come to this from many years of regular biking, this is an extremely dangerous piece of equipment, at least until you retrain your old habits. Speed is definitely not something that will occur on this trike. You have to constantly be on the alert to make sure it is pointing straight ahead, there is no margin of error. There are biking trails on old railroad beds near our house, great for practicing on level paths. Year 2 of recovery I would do an 18 mile loop in 4 hours. In year 3 I got it down to 3 hours mainly because I finally got a 3 inch longer seatpost so I could have better cycling form. In year 4 the loop still takes 3 hours, I haven't done enough riding this year.  You can read about my plans to get back to a two-wheeler here.

lack of visibility for stroke survivors

This was a great article on the lack of visibility for stroke survivors.
Bringing stroke out of the shadows
Shame, lack of attention still surround disease despite its prevalence
http://www.baltimoresun.com/news/opinion/oped/bs-ed-stroke-20101028,0,4151798.story

My take on this is that not until survivors get into positions of power in the stroke associations and the World Stroke Organization will visibility change. The other unmentioned problem is that stroke is seen as an old persons disease and they just need to pass the time until they die.

world domination vs. stroke rehab protocols

Which is easier? I would go with world domination. Getting standard stroke rehab
protocols would be like pushing an al dente noodle up a mountain. All the stroke
associations have a vested interest in the status quo, therapists would have to
realize that their training was incomplete, Doctors would lose their mythical know
everything status.
Hippocratic dictum that ‘It is impossible to cure a severe attack of apoplexy and difficult to cure a mild one’
In 2400 years not much has occurred.
I hope we get something in the next 10-20 years.

Oh well, thats what happens when a stroke-addled brain thinks logically. And because I am so stupid I am working on the harder task of getting standard stroke rehab protocols.

woodworking and stroke rehab

I used to do a fair amount of woodworking, I have the tablesaw, several routers, mortiser, planer, jigsaw and pneumatic nailers and staple guns.I built the medicine chest and cabinet for the bathroom. also the complete upper and lower kitchen cabinets. Our compost bin was falling apart so one weekend when my wife and daughter were out of town I cut cedar 2x4s to length on the tablesaw using my sliding sled, They were butt nailed with my pneumatic nailer and the screening attached with my pneumatic stapler. I was quite proud of my accomplishments. However my wife saw it differently as a complete lack of higher reasoning. In her defense she had recently seen me sneeze at the kitchen table during supper and sweep the plate and glass from the table with my left arm, breaking them. Her reasoning being that woodshops produce dust, dust causes sneezing, and cutting off the non-functioning hand is not a good idea. I however reasoned that only doing crosscuts and doing them with a sled would keep my left arm at least two feet away from the blade at all times. The end result was that I was banned from the workshop. She did the next year give me a gift of a beginning woodturning course at the North House Folk School in Grand Marais, MN and the next Christmas got me a lathe. She thinks that because no sharp objects are spinning it is safer. When I relate this idea to woodturners I have met they invariably mention how many holes are in their walls from chunks of wood flying off the lathe. And then there was the story from the woodturning association I joined. It seemed that during a demo the month prior to me joining that there was an individual standing behind the demonstrator. The demonstrator had on the apron and full face shield, his turning gouge caught on the wood and was thrown over his shoulder. The bystanders eye was put out. I do wear safety gear when turning but I haven't related any of these horror stories to her yet.
My hope with this as rehab is first that the vibrations of the gouges on the left hand will wake them up proprioceptively and then start on the motor control.

Don't even think of doing anything as stupid as this. Remember your doctor has to ok all your rehab and check with your spouse also.

black hole of stroke rehab knowledge

A common question from survivors is, 'what should I do to have the best chance of recovery and my doctor hasn't told me anything useful?
You have hit the black hole of stroke knowledge. Nobody will tell you anything because they don't know.
If your doctors were good they would show you a 3d image of your scan mapped onto a brain and describe the penumbra damage and what functions were damaged. Then they would describe the dead brain areas and the functions those covered. You can try asking your doctors again but they will use the Sargeant Schultz reply, ' I know nuthin'. The problem is that everyone looks at the symptom of the deficits rather than the cause, which is the damage to the brain. You probably need to train your doctors in these concepts.

Standard response to stroke rehab questions

Since I post in numerous forums and there are lots of questions on what to do next I came up with this standard response. Of course this does contradict what you will hear from your medical staff; 'All strokes are different, all stroke recoveries are different.'

The whole problem here is that the medical world does not have any clue as how to approach getting stroke survivors back to full recovery. They are hoping that your spontaneous recovery in 6-12 months is enough to satisfy you. What needs to be done is identify the penumbra and those functions, these are helped by standard therapy protocols because you still have a limited ability to do those functions and repetition will help recover them. The second part is to identify the dead brain area and the functions they covered. This requires a totally different approach, mainly you need to neuroplastically move those functions to another part of your brain. Some therapies than might be able to accomplish that are; mental imagery, passive movement, mirror-box therapy, thermal therapy. I would say your crucial answer is to completely understand neuroplasticity and find therapists who understand how to do that. But what the hell do I know, I'm just a stroke-addled survivor,

car driving and stroke rehab

I got back to driving after 1.5 years. My doctor never cancelled my license, but my spouse had me take an adapted driving assessment anyway to check my reaction times and have a driving test with a car with an automatic transmission and a spinner knob on the steering wheel. I'm right handed - my good side so I would have to reach around the steering wheel to turn on the turn signals. That is the hardest thing to coordinate because you have to be going straight while doing this. I didn't have left neglect so that was not an issue. Had to buy a new vehicle with automatic transmission since the two we had were manuals.  I've been driving for over 3 years now I do have to pay a lot more attention to what I am seeing, checking the mirrors constantly since blind spots are harder to see into. Backing up is something I try very hard not to do. One constant problem is where to put my spastic left arm, if I put it on the outside of my left leg , that pushes the leg into the steering wheel. So it is possible but you may have to solve some problems on your own. You are limited in when you can change the radio/CD player, work on the defroster/heater. You basically have to wait until you are stopped to do anything else. There is no multitasking when driving, no drinking coffee, sodas, pop or eating snacks, even talking is sometimes too much.

My first woodturning class in Grand Marais was in March 2008 and driving home at dusk, a deer ran in front of my car. I managed to at least slow down a little by hitting the brakes, killed the deer, kept the car on the road. Luckily it was still driveable. Since  it was a deer accident it was fully covered by comprehensive with no deductible. Some 3500 dollars in damage.

Took a homebrewing class 2 years ago at North House Folk School in Grand Marais,MN about a 4.5 hour drive for me. Last year I looked at my turn signal and tried to figure out a way to start using the affected left arm to turn it on and off. Since I can't lift my arm when sitting I thought about putting my arm on the window edge but it just slid right down. So I bought a gel padded arm rest that slides into the window opening about 3x6 inches. My pectoral spasticity just pulled my arm right off the pad. So I thought some more and bought some velcro straps and attached them to the pad and velcroed my arm to the pad. The pectoral took over again and after 1 minute pulled the whole thing from the window. So on the drive up I thought I would just loop the velcro over the car door frame and attach it to my wrist brace, mainly to try to quiet down my pectoral by keeping it in a stretched form and keep my arm straight relaxing my bicep. I was sucessful at that for about two hours when my bicep started flexing and I had to stop because the weight wasn't distributed properly. I needed more velco in order to pull the whole arm forward and another piece to hold up my elbow. So I went to Joynes Ben Franklin in Grand Marais and got more velcro. On the way home the setup worked for an hour. I can't move my arm to reach the turn signal but my objective has now changed to stop the spasticity in my bicep and pectoral which it does seem to help. This is only possible on long trips since it takes about 20 minutes to setup.

This is not medical advice, don't try this at home.

I went on a road trip to an Elderhostel program in Santa Fe,NM, Brain Skills Training in March 2010. I had to choose between flying there and driving. Driving won hands down. Cost was the same, I hate having to lug my luggage thru airports, especially trying to carry bags and walk with a cane so I don't tip over. I'm left side affected and I wanted to get in three days of driving therapy. I would put my left hand at the 11 o'clock position and just leave it there,. This meant hours of spasticity reduction in my bicep and pectoralis. My wrist was also cocked up at 80 degrees. I don't trust driving with my left arm alone so my right hand would always be on the spinner knob at the 4 o'clock position. Luckily I coud rest my right elbow on the center console. Changing CD's or radio stations would mean coming to a stop to do it. When my left arm got tired I would put it between my legs and sit on the thumb with the fingers dangling loose, this wasn't quite as effective in reducing my spasticity but still allowed hours of enforced stillness.

In order to combat the fatigue I still experience, I would get a large coffee from the motel and one hour later stop and buy another one. Drinking it did require stopping. This had a two-fold advantage, the caffeine kept me alert and the urge to urinate made me stop at almost every rest area.

As one survivor wrote about her walking, she had to "brain" her walking. In my case I had to expend 100% of my brainpower to drive. On Friday I drove 7.5 hours to Omaha,NE from Minneapolis including 4 hours in a snowstorm through Iowa. On Saturday I drove 9 hours to Denver. On Sunday I drove 6 hours to Santa Fe. I can see why the speed limits are 75 mph in NE, CO and NM, it takes forever to get any place.

No problems encountered on the drive.

On the way home I did get pulled over by a Nebraska trooper for weaving in the lane. This was because I had just gotten my left hand on the steering wheel coming down the on ramp and hadn't fully gotten control with my right hand. In the process of getting pulled over I had to switch lanes on the Interstate, which I did without signaling because I would have had to use my right hand over the steering wheel and I didn't want to lose control with a trooper right behind me. So I got a warning for inattentive driving, not signalling and not carrying car registration. I don't think he ever realized he was talking to a stroke survivor and I sure wasn't going to explain to him why I weaved and didn't signal.

Don't make any assumptions that if I could do this you can. Consult with your medical staff on your feasibilty. Of course I didn't but the OT that gave me the driving and reaction test said I did ok. And with 3 years of driving under my belt I feel pretty confident. This past summer I came up with another way to stretch my spastic left arm. I roll the drivers window all the way down and let my left arm dangle as much as possible outside the window. A couple of weeks ago I went to a Peter Levine seminar in Des Moines, IA which is a 4.5 hour drive. On the night drive down I did this for 1.5 hours until it got too cold. The wind blowing through the hand/fingers was great for getting additional sensory input to my brain. On the way back home I did the same thing again for 1.5 hours until it started to rain. That was very nice to feel because it felt like my hand was getting sandblasted. Great for overstimulating my sensory inputs.

Remember your medical staff has to ok all therapy, you didn't hear about this from me.

plane rides and stroke rehab

Ok this is just posted for fun.
What happened on my first plane flight?
On my 50th birthday my wife put up a series of questions about me for the guests to see how well they knew me. This was three months before my event.
The one I liked best was:
What happened on Deans' first airplane flight?
1. He got on the wrong plane and ended up in Fargo,ND
2. He got sick and threw up in his briefcase.
3. He jumped out.
And the answer is 3. He parachuted out.
I know this isn't a stroke related response and I certainly don't recommend this as a therapy.
One of the preparations for this was jumping from a picnic table to simulate the landing. At work there was some talk about our unit doing some skydiving, while I would gladly do it again there is no way I could jump off of any height and land safely.

nicotine and stroke rehab

Nicotine Holds Promise for Stronger Stroke Recovery
http://www.uleth.ca/notice/display.html?b=4&s=3995
What you get with nicotine is the animals with stroke show better recovery and improvement. It speeds things up and you get to a higher level of rehabilitation.
It turns out that nicotine, in contrast to amphetamines, acts in a larger area of the brain and seems to act where the amphetamines don't - in the motor system. That's a real advantage, because one of the big problems in stroke is loss of motor functions.
 I have never smoked and don't plan on starting or using patches.

 Don't consider this an endorsement of nicotine being good for your recovery.
Ask your doctor for guidance on this.

Brewing and stroke rehab

I added a few lines to this and deleted the old post
I brew homemade beer. This is a multi-step process, First you boil 3 gallons of water with selected grains, malt extract and hops(wort), cool it down to 70 degrees to allow yeast to survive, add two gallons of water. The proper way to cool down the wort is to set the 5 gal. kettle in the sink with rafts of ice cubes. There is no way I can do this with a barely useable left arm/hand. So I siphon it into the fermenting bucket, filled with ice water. This of course introduces the possibility of contamination, but allows me to do this part by myself. The fermentation continues for 3-4 weeks and then is transferred to a glass carboy for final fermenting and settling of solids. Two weeks later after fermentation is done, the yeasties have eaten most of the sugar, turning it into alcohol. Siphon it to a bottling bucket, add 3/4 cup of sugar - This is to give the leftover yeasties something to chew on and carbonate the beer in the bottles. Bottles are filled and capped. I ask a friend over for this because the capper I have is a two-handed affair and it would take me forever to get it all done. The 5 gallons makes 48-50 bottles of beer. For the first 2 years I refrained from any alcohol because I thought it might slow up my recovery. Then I realized that recovery was going extremely slow anyway and I might as well enjoy a few brews during it. The current batch is raspberry and cherry stout.
This is all about compensation rather than doing tasks to help recovery.
This article

Alcohol Consumption and Functional Outcome After Stroke in Men

at http://stroke.ahajournals.org/cgi/content/full/41/1/141
Selected lines are as follows:
A meta-analysis found that consuming less than 1 drink per day was associated with a significantly reduced risk of stroke compared to nondrinkers.
Light-to-moderate alcohol consumption has been associated with reduced risk of total and ischemic stroke. However, data on the relationship between alcohol consumption and functional outcomes from stroke are sparse.
Don't consider this an endorsement of alcohol being good for your recovery.
Ask your doctor for guidance on this. Women you are on your own, sorry.

Brunnstrom vs. Bobath(NDT) stroke rehab

I was involved in a stroke research trial and therapy students were running the experiment. I asked one of them, Which model of therapy are you taught? Bobath or Brunnstrom? He said he didn't know. My PT at the time was assisting the professor in teaching the class and I asked her about it. She said they were taught the difference but they were mainly ortho PTs rather than neuro PTs. I laughingly told her that she had better prepare them for patients like me that know more than they do. For those of you interested in this you can read this: Diversity in Neurological Physiotherapy: A
Content Analysis of the Brunnstrom/ Bobath
Controversy
http://en.scientificcommons.org/26409679
Well this article used to be here free in PDF form and I was able to read it - http://www.informaworld.com/smpp/content~db=all~content=a713795658

And another comparison study of Motor Relearning Program vs. Bobath:
http://cre.sagepub.com/content/14/4/361.short

Objective: To examine whether two different physiotherapy regimes caused any differences in outcome in rehabilitation after acute stroke.

Design: A double-blind study of patients with acute first-ever stroke. Sixty-one patients were consecutively included, block randomized into two groups, and stratified according to gender and hemiplegic site. Group 1 (33 patients) and group 2 (28 patients) had physiotherapy according to Motor Relearning Programme (MRP) and Bobath, respectively. The supplemental treatment did not differ in the two groups.

Main outcome measures: The Motor Assessment Scale (MAS), the Sødring Motor Evaluation Scale (SMES), the Barthel ADL Index and the Nottingham Health Profile (NHP) were used. The following parameters were also registered: length of stay in the hospital, use of assistive devices for mobility, and the patient's accommodation after discharge from the hospital.

Results: Patients treated according to MRP stayed fewer days in hospital than those treated according to Bobath (mean 21 days versus 34 days, p = 0.008). Both groups improved in MAS and SMES, but the improvement in motor function was significantly better in the MRP group. The two groups improved in Barthel ADL Index without significant differences between the groups. However, women treated by MRP improved more in ADL than women treated by Bobath. There were no differences between the groups in the life quality test (NHP), use of assistive devices or accommodation after discharge from the hospital.

Conclusion: The present study indicates that physiotherapy treatment using the MRP is preferable to that using the Bobath programme in the acute rehabilitation of stroke patients.

This was my response to a PT blogging about using clinical experience vs. evidence. NDT has wonderful clincal experience but is not supported by the evidence.
From Tonis' blog
http://community.advanceweb.com/blogs/pt_2/archive/2010/09/14/too-much-evidence.aspx
I'll give you my take on NDT(neuro Development treatment - the Bobath approach). My OT was trained in it and if you look at what I acheived with it you would say that it worked. I however think that any clinical experience with it hasn't split out the spontaneous recovery of the penumbra from what can be acheived with the therapy. Now that I have done lots more reading I prefer the Brunnstrom theory vs Bobath. The reason behind that is that NDT requires a therapist standing next to you telling you NO all the time. Brunnstrom allows you to use any movement possible. As a patient it is much more satisfying to be congratulated on some movement rather than constantly being told that what I am doing is wrong. And since I am now on the do-it-yourself model I am not going to be telling myself, No you are using muscles you are not supposed to. If it doesn't look good I will change it later whenever I neuroplastically get the dead brain functions moved.

And here is Peter Levines take on NDT:
http://recoverfromstroke.blogspot.com/2009/05/sonotthecase.html

depression and stroke rehab

If it occurs to you seek medical help, it is not easily overcome on your own and untreated really slows down your recovery.
Depression was not really present during the 5-week hospital stay, mainly because I was not told anything about how severe my stroke was or what the likelihood of recovery was. I was thinking that I would be back to normal in 9 months. The psychiatrist I saw in the hospital tried to get me to admit that I was mad at my body for failing me, I refused  to believe it because I was still under the impression I would recover fully and soon. After release from the hospital and research started on the internet did it finally dawn on me that I was totally screwed considering the physical deficits I had that barely seemed to get better. Anyway depression did set in around 6 months, I saw a social worker a couple of times. Persistence and never giving up are key to keeping going, I figure I have 40 more years of living to do yet and if I work hard on recovery they will be much more enjoyable that moaning about my sad lot in life.
Currently am seeing a therapist and taking Zoloft. It has provided a better attitude, but a lot of that is because I have figured out what needs to occur to recover, not easy but possible.
And anti-depressant drugs have been shown to help motor recovery. Although I'm not sure that I'm within the necessary timeframe.  Probably by increasing the level of serotonin in the central nervous system.
Prozac May Speed Physical Rehabilitation After Stroke

fingerprinting and stroke rehab

I work for a financial services firm. After I came back from my 6 month medical leave of absense there was a requirement that all employees needed to be fingerprinted. This was an expansion since before this Information Technology employees did not need to comply. I went and this was the non ink version, glass plate technlogy. The right hand went fine, both individual fingers and palm print. The left hand was extremely recalcitrant. On the glass plate if you press too hard it won't register because the ridges smoosh together.  I never was able to get the right pressure on individual fingers due to spasticity, even though I was holding them with my right hand. The operator excused herself and went to make a call to see if the left hand was necessary. She came back and said it wasn't. My speculation was that there was a realization that if I was going to commit a crime it would be with my right hand.
 I don't plan on working this into my stroke rehab goals but it was rather funny. This would be a good idea for a crime show. 'We have a complete set of left hand prints but they don't match to anyone'

How to stay informed of stroke rehab

Add 'stroke rehabilitation' to Google alerts,  You will get a daily email containing 4-10 links that cover stroke rehab. 1-2 of them each day are worth reading.
Add 'stroke rehabilitation' to Yahoo alerts. This one gets you 1 link every week or so. not really worth doing since the Google one is better.
There are lots of neurological magazines you could put an alert in but google seems to pick those up anyway.
The google alerts picked up one of my blog postings
dean's stroke musings: Is the stroke rehab research emperor naked which was interesting because it didn't pick up brewing and stroke rehab.
Anyway I will have to put stroke rehab in all my blog posts to see if that works.

It worked!! Todays google alert had this entry in it.
dean's stroke musings: How to stay informed of stroke rehab
By oc1dean
Add 'stroke rehabilitation' to Google alerts, You will get a daily email containing 4-10 links that cover stroke rehab. 1-2 of them each day are worth reading. Add 'stroke rehabilitation' to Yahoo alerts. This one gets you 1 link every week or so.

So from now on all my titles will have stroke rehab in them. And after you read those web articles leave a comment for the authors taking them to task for the lack of detail they are providing.

You should be a bad patient in your stroke rehab

I have been reading a new book, Deep Survival : Who Lives, Who Dies and Why by Laurence Gonzales.This paragraph on page 82 I think should be applied to us stroke survivors.

Psychologists who study survival say that people who are rule followers don't do as well as those who are of independent mind and spirit. When a patient is told he has 6 months to live, he has two choices: accept the news and die, or rebel and live. People who survive cancer in the face of such a diagnosis are notorious. The medical staff observes that they are 'bad patients',unruly, troublesome. They don't follow directions. They question everything. They're annoying. They're survivors.
Make yourself into a 'bad patient'.

Remember, make sure you ask your medical staff for permission to be a 'bad patient'.

If you don't make your medical staff uncomfortable in their not answering your questions then you need to try harder. Make them feel guilty and maybe they will go back to their associations and ask for details on what to do for stroke patients. Nothing else seems to be working.

Is the stroke rehab research emperor running around naked?

Is the emperor wearing any clothes? I loved this parable. From all the research I have been reading I really can't tell if any of it is valid.
My concerns are;
1. There is no standardized definition of stroke damage. If you can't even define your starting point there is no way that research can be replicated.
2. No one seems to be separating the spontaneous recovery from the recovery due to therapy.
3. There aren't enough projects using scans to prove changes.
Maybe I am too stupid to comment on stroke research since million dollar words are used to keep us peons in the dark.

My Tai Chi exercises for stroke rehab

I took a tai chi class last year. A lot of the movements were too complicated for my abilities, all of the free swinging arm movements above my head were only possible in a compensatory way by using my right hand to grab my left and mimic the movement.
I was able to take some of the simpler moves and keep doing them after the class.
Elephant swing - hold both arms loosely at your side, rotate your body right and left letting your arms swing in front of and behind you. Due to the spastic left arm this looks rather stupid.
The wave - hold both arms at your sides, swing them forward and backward. I still can't do this, my brainpower is not enough to control two sets of muscles at once.
The bass drum - trace the outline of the rim of a bass drum clockwise and counter-clockwise in front of you. I clasp both hands together to do this.
The platter -trace the outline of the rim of a platter clockwise and counter-clockwise in front of you. I clasp both hands together to do this.
Natural stepping - stand on one leg and step forward and backward with the other one. I sometimes have to use my cane to stay balanced.
This is my personal exercise regime. Do not attempt any of these without checking with your medical providers.

My abbreviated Background story 2

I fell down walking across the bedroom floor that morning, May 21, 2006. I called to my wife, Sarah asking for help to stand up. She was already on the phone dialing 911 and answering the questions, drug use, high blood pressure, diabetes, overweight, All were negative. The paramedics came and asked the same questions mainly because there was this healthy looking 50 year old lying on the floor with some stroke symptoms. I spent the next 4 weeks in HCMC - Hennepin County Medical Center. In the Emergency room I received tPA, the clot busting drug,within the hour. I did not get the immediate miracle so the doctor said I would have to settle for the slow miracle recovery. I had Physical, Occupational and Speech therapy while there.Deficits from the stroke were left side paralysis. Mental cognition, eyesight and speech were not affected. By the time I left the hospital I could walk with a 4 point cane and AFO - Ankle Foot Orthotic. This occurred the day after returning from a strenuous 6 day whitewater canoeing trip on the Dog River, Ontario(23 miles and dropping 1050 feet with a 1.5 mile portage around a 120 ft. waterfall) and driving for 12 hours to get home. So the timing was fortuitous that I was at home when it occurred, (This website contains a slide show of a small part of the photos from that trip; http://www.rapidsriders.net/gallery2/main.php and then click on Album Dog River 2006, I am in the red canoe, my partners were Alan Faust in the purple canoe and Brian Johnston in the yellow canoe). My doctor speculated that I probably had a weak spot in the carotid artery and it was just a fluke occurrence. A later doctor speculated that plaque lifted up and tore. I don't believe I hit or twisted my neck hard enough on the trip to cause the tear. Update from April, 2008. I just had an ultrasound done and the artery that tore is now totally blocked, so I don't have to worry about that particular section anymore. There are three other arteries feeding the brain so it still gets enough blood.
Check out my MRI pictures lower in the blog and ask your doctor to see yours, at least 1 week after the event.
I have become fanatical about learning about everything to do with stroke since there is no one in the world that seems to know very much about it. A lot of this is to not have new survivors have to go thru the same 3 year learning process as I did.

What the hell makes you think you know more than your stroke rehab staff?

I get this question from my wife. Shes a PT so any questions questioning the medical profession are seen as an attack on her training.
For anyone else asking this question of me the answer is as follows. Hell yes, my original doctors proved that they were not keeping up with medical advancements. I live and breath thinking about this 24 hours a day. I have read numerous books on the subject and hundreds of research abstracts. I also read all the questions and answers on 12+ stroke forums on the web. Every stroke association web site is way too general to help any survivor. So I am arrogant enough not only to think I am smarter and more knowledgeable than my medical staff but I know I am. Read my post What my doctor should have told me about stroke recovery to get an idea where I think we should be going.

Compensation vs. recovery stroke rehab

One of the things I wish my medical staff had mentioned to me was the difference between compensation and recovery. Compensation being doing whatever is necessary to accomplish a goal. Recovery is using the muscles as intended to accomplish the same goal. Insurance wants you to use compensation whenever possible because it is faster and cheaper. The best example I can give is I had a substitute OT and she asked for what my next goal was, I told her I wanted to be able to read a newspaper. She immediately proceded to place a sticky material(Dycem) on the table and put the newspaper on top of that to help with holding it in place as the pages were turned. This was compensating for my inability to open my left hand, keep my left wrist straight and hold my left arm up in the air. I didn't want to compensate, I wanted to figure out how to hold the paper and read it with two hands. She took the easy way out and marked it as accomplished. 4 years later I still can't do this the proper way but I have at least mapped out the necessary steps to finally accomplish this.
Peter Levine has a great blog post on this. What happens to your brain if you compensate.
http://recoverfromstroke.blogspot.com/2010/11/make-them-walk-funny-and-look-lousy-in.html

This is the great divide in what survivors want vs. what the therapists can work on because of insurance/HMO guidelines. Most survivors want complete recovery while therapists need to work on ADLs to be able to get paid. Insurance guidelines require that functional ability be able to be created/maintained within 4-6 weeks. If progress is not made then the dirty word - plateau - is brought up. Plateau is not a medical term, it is just used to deny further therapy. My workaround when I was still getting therapy was to set as a goal something I was already able to do. One goal was to be able to get on/off an escalator. I could already do it because I needed it at work. A goal my OT set for me was to use my left arm/hand to open the refrigerator at home. 4 years later I still can't do this because I can't open my fingers. So I compensate and use my right hand. The main one is the use of AFOs to compensate for the lack of dorsiflexon. By using most compensation strategies you are actually preventing recovery from taking place. So you need to make a decision on which route you want to go.

The fall

A couple of weeks ago I fell getting out of an elevator at work. Left foot drop caught on the transition. No damage except to my pride and a bruised kneecap. This was only the second time I have fallen walking since my event, the first time was walking on hard-packed snow at a cross-country ski lodge. This time it precipitated comments from both my wife(who is a PT) and daughter that my walking has deteriorated since giving up the AFO and I should start wearing it again. So I agreed that I would wear it at work and at home would not use it. Oh well, setbacks are to be expected. I had walked without the AFO since my canoe trip in 2009.

Book reading list for stroke rehab

Because I was told nothing I started reading to figure out what I could do for my recovery. This is the list of books I read and my thoughts on their usefulness.

Here are the books I've read on neuroplasticity. These are the ones that should be required reading.
The mind and the Brain : neuroplasticity and the power of mental
force / Jeffrey M. Schwartz and Sharon Begley.
Train Your Mind, Change
Your Brain: How a New Science Reveals Our Extraordinary Potential to
Transform Ourselves by Sharon Begley
The brain that changes itself : stories of personal triumph from the frontiers of brain science / Norman Doidge.
Neurological rehabilitation Carr, Janet H.
Stronger After Stroke by Peter Levine The best book by far. This one is worth buying

This one is about neurogenesis which I think the future of stroke rehab will be based on.
John J. Ratey, MD, author of Spark: The Revolutionary New Science of Exercise and the Brain.

Phantoms in the brain : probing the mysteries of the human mind / V.S. Ramachandran, and Sandra Blak

My Stroke of Insight by Dr. Jill Taylor
Change in the Weather: Life After Stroke by Mark McEwen
Don't Leave Me This Way: Or When I Get Back on My Feet You'll Be Sorry by Julia Fox Garrison
Still Here : embracing aging, changing, and dying / Ram Dass ; edited by Mark Matousek and Marlene Roeder.
Brain, Heal Thyself: A Caregiver’s New Approach to Recovery from Stroke, Aneurysm, And Traumatic Brain Injuries Madonna Siles
These are all personal accounts , they are good for seeing what persistence does but can't be looked at for help in determining if their methods might work for you. This is because none of them has any specific diagnosis of what areas of the brain died and which areas were damaged so you can compare their damage to yours.
Teaching Me to Run by Tommye-K. Mayer. If you want to run again, this one gives her step-by-step approach and shows a good way to analyze how to approach rehab.
Other books at least partially about stroke that I found useful;
Hippocrates' shadow : secrets from the house of medicine / David H. Newman. Good for realizing that doctors do not know everything.
Stretching / Bob Anderson ; illustrated by Jean Anderson.
While I can't do most of these I try to adapt these to loosen my spastic muscles.
The Whartons' stretch book : featuring the breakthrough method of active-isolated stretching / Jim and Phil Wharton with Bev Browning. This is the better of the two stretching books.
Anatomy of Movement by Blandine Calais-Germain This one came recommended from my OT. It helps me visualize what muscles are being used for what movements and has some excellent diagrams
of walking.
A motor relearning programme for stroke by Carr, Janet H.
clinical science of neurological rehabilitation,Bruce H. Dobkin
Willard and Spackman's occupational therapy.
9th ed. / [edited by] Maureen E. Neistadt, Elizabeth Blesedell Crepeau
Got some additional inhibition techniques for spasticity from here. Rood technique
Gait Analysis: Normal and Pathological Function
by Jacquelin Perry, Bill Schoneberger
The body has a mind of its own : how body maps in your brain help you do (almost) everything better / Sandra Blakeslee and Matthew Blakeslee
Sensory re-education of the hand after stroke by Yekeutiel, Margaret
Hand Recovery after Stroke, Exercises and Results Measurements by Johannes G. Smits, Else Boone Smits, and Else C. Smits-Boone Only useful if you still have some movement.
Hand and brain by Wing, Alan M. not very useful
The healing art of qi gong : ancient wisdom from a modern master / Hong Liu, with Paul Perry.
The survivors club : the secrets and science that could save your life / Ben Sherwood. This one had a statement that in a disaster, 10% of the people became leaders, 80% followed, 10% did nothing/gave up. So the choice is up to you;Are you going to be in the top 10%? I am.
Deep Survival : Who Lives, Who Dies and Why by Laurence Gonzales.
Psychologists who study survival say that people who are rule followers don't do as well as those who are of independent mind and spirit. When a patient is told he has 6 months to live, he has two choices: accept the news and die, or rebel and live. People who survive cancer in the face of such a diagnosis are notorious. The medical staff observes that they are 'bad patients',unruly, troublesome. They don't follow directions. They question everything. They're annoying. They're survivors.
Make yourself into a 'bad patient'.

Faster, better, stronger : 10 proven secrets to a healthier body in 12 weeks / Eric Heiden, Massimo Testa, and DeAnne Musolf.
One-Handed in a Two-Handed World (Second Edition) (Spiral-bound) by Tommye-K. Mayer

The luck factor : changing your luck, changing your life, the four essential principles / Dr. Richard Wiseman
The talent code : greatness isn't born. It's grown. Here's how / Daniel Coyle.
Talent is overrated Colvin, Geoffrey
Outliers: The Story of Success by Malcolm Gladwell
These three can be applied to stroke rehab, they essentially say that innate talent doesn't exist, it is all just focused practice, just like our massed practice therapy.
Rapt Attention and the Focused Life
Winifred Gallagher
Brunnstrom S. Movement therapy in hemiplegia:
a neurophysiological approach.
Bobath B. Adult hemiplegia: evaluation and
treatment,


Clinical Neuromythology and Other Arguments and Essays, Pertinent and Impertinent
Second Edition
By: William Landau
( this one I will never buy, I will not support him due to his misguided ideas on spasticity )


And here are the general brain knowledge ones:
The Three-Pound Enigma
Author: Shannon Moffett
A user's guide to the brain : perception, attention, and the four theaters of the brain
by Ratey, John J.
The secret life of the grown-up brain : the surprising talents of the middle-aged mind / Barbara Strauch This one was great because it supports the idea that middle-aged brains actually work pretty well.
Phantoms in the brain : probing the mysteries of the human mind / V.S. Ramachandran, and Sandra Blak
Evolve your brain : the science of changing your mind
by Dispenza, Joe
Rewire your brain : think your way to a better life
by Arden, John B.,
The Man Who Mistook His Wife for a Hat, Oliver Sacks




Ones I would like to read:
.
Being wrong : adventures in the margin of error / Kathryn Schulz
Peeling the Onion: Reversing the Ravages of Stroke
Striking Back at Stroke: A Doctor-Patient Journal
Stroke Rehabilitation - Guidelines for Exercise and Training to Optimize Motor Skill by Janet H. Carr and Roberta B. Shepherd
Acupuncture for Stroke Rehabilitation: Three Decades of Information from China
Rehabilitation of Paralysis Due to Apoplexy by Pan Chang
Clinical Science of Neurologic Rehabilitation
by Bruce H. Dobkin
Stroke Rehabilitation: Guidelines for Exercise and Training to Optimize Motor Skill Carr J, Shepherd R. Edinburgh: Butterworth-Heinemann; 2003, softcover, 301 pp. illus, ISBN: 0-7506-4712-4,
Textbook of Neural Repair and Rehabilitation
Acupuncture for Stroke Rehabilitation- Three Decades of Information from China by Hoy Ping Yee Chan
Upper Motor Neurone Syndrome and Spasticity, Clinical Management and Neurophysiology
Michael P. Barnes & Garth R. Johnson Eds
The Creating Brain
Author: Nancy C. Andreasen
A Brief History of the Mind
Author: William H. Calvin
7 Steps to a Healthy Brain
Author: Paul Winner

stroke measurement

Hi Does anyone know how a strokes severity is managed? This question came on a stroke forum and piqued my interest. After some research there is really nothing out there. For example 1-10 scale
one-size-fits-all
Cancer has stages and at least they tell you where the cancer is located.
I have heard of a couple of people who were told ccs of dead area but even they were not told where the dead area was. but alas I was told nothing.
from 1998
American Heart Association Classification of Stroke Outcome Task Force has worked to develop a valid and reliable global classification system that accurately summarizes the neurological impairments, disabilities, and handicaps that occur after stroke.
For stroke survivors to receive the best care, a comprehensive stroke outcome classification system is needed to direct appropriate therapeutic interventions
And these scales are based on deficits rather than the parts of the brain that were damaged. Here is the classfication system
I agree with the need but it is based on impairments rather than brain location and penumbra damage vs. dead brain so I think this is actually rather useless. I don't think this ever gained acceptence since no survivor has ever mentioned it.

British Stroke Association

This was a request from them to their survivors asking for help. If only all the stroke associations around the world would do this we might get some results.

Here at the Stroke Association we are looking for a representative sample of people affected by stroke to take part in a reader panel to provide feedback and advice on our written information publications and help us to be really sure that they are meeting the needs of stroke survivors and their carers.
Reader panel members will be sent a range of publications by post or email to read at regular intervals throughout the year and will be asked to provide a range of feedback, via a method appropriate to your needs.
Whether you are a stroke survivor; a family member, a carer or friend of someone who's had a stroke; or you have an interest in stroke, if you think this role sounds interesting we want to hear from you!
To express your interest and request a role description and application form please send your name, address, email address and telephone number to us by emailing: info@stroke.org.uk

I wish I was British, I could provide excellent feedback.
So far I have only seen the British and Australian ones that seem to be survivor focused.

catch-22 of stroke rehab

No one is really addressing that most therapies including CIMT and Saebo require some minimal motor functionality in order to start using their therapy. To me there should be some defined path to get to that minimal movement. This is a wonderful catch-22, you don't have the movement to use our therapy and we don't know what to tell you to get to that minmal movement. This underscores my ideas on therapy for penumbra recovery should be different than therapy for dead brain recovery.

Oh well, beating my stroke addled head against a wall again.

cross country skiing and stroke rehab

When I first started cross-country skiing the trails were just the hiking trails in state parks. There were extremely narrow with sharp turns. You had to learn quickly or you would run into trees. I became quite proficient at skiing. After my event this was one of the things I wanted to accomplish. 9 months in with my wife and daughter assisting I 'skied' one block, my daughter would take my left arm with the pole attached and place it for each stride. That was the extent of skiing the first winter. The second winter I went along to a ski lodge in northern Minnesota. I skied maybe 3km on dead flat trails. The third winter I skied 10km and tried going up a 6 foot rise, I failed and fell, herringboning up hills is currently not possible. I ski with one pole in my right hand. Getting up with skis on is an interesting exercise in rolling in the snow until you get everything in the right position to push yourself upright. I skied a short while past the hill and turned around. Going down the hill I fell again because the groomed tracks disappeared halfway down the hill and I use those tracks to be able to keep my skis going in the right direction.
The fourth winter I just stayed on the flat trails and skied maybe 15 km. It looks like shuffling on skis but is still fun. This year I wasn't wearing my AFO which was probably a mistake because my ankle would roll to the outside of my left foot. It was darn lucky I didn't sprain my ankle. This coming winter I think I will go back to the AFO, still no arm swing so the left hand pole won't be used.
Don't think of this as medical advice.

hospital vampires

Hospital vampires, beware of them, they do exist
I wrote this when I was still in the hospital. Practically every morning when I was in the hospital between 7 am. and 7:30 am one comes in the room saying I'm from the lab and need some blood work done. It seemed that every other day the vampire came for me. The one this morning was very polite, asking which arm I wanted to offer him. His prehensile fingers expertly put a tourniquet on the arm and cleaned the selected spot with an alcohol swab. He even thanked me for good gusher he selected. After he was done he thoughtfully put a cotton swab over the puncture and taped it down. I personally think this was more for hiding his victims from the other vampire residents than for his concern for me bloodying the sheets.
You can tell when the place is infested when the tourniquets are strewn around the room., They look like 1 inch wide flat rubber bands, blue. When I first got to my room there were two tourniquets draped over the bed rails and one on the door knob, I should have screamed bloody murder and requested another room but I was naive about the safety of hospitals.
No wonder I was exhausted all the time and could fall asleep in the 10 minutes
between therapy appointments. And there weren't any young women to distract him, just us middle-aged and old codgers.
Beware