Vibration and stroke rehab

Two different whole body vibration tests came to different conclusions
1. http://stroke.ahajournals.org/cgi/content/full/37/9/2331
Long-Term Effects of 6-Week Whole-Body Vibration on Balance Recovery and Activities of Daily Living in the Postacute Phase of Stroke
Conclusions— Daily sessions of whole-body vibration during 6 weeks are not more effective in terms of recovery of balance and activities of daily living than the same amount of exercise therapy on music in the postacute phase of stroke.
2. http://www.mywholebodyvibration.com/2010/03/04/whole-body-vibration-shown-to-benefit-stroke-recovery/
These results suggest that one session of whole body vibration can quickly increase voluntary force and muscle activation of the quadriceps muscle affected by a stroke. One session of whole body vibration (20 Hz frequency, 5mm amplitude) was shown to quickly increase isometric and eccentric strength of knee extensors at the affected side. Whole body vibration may help to increase the effectiveness of an additional functional rehabilitation program.

And this article on the use of it in the gym wonders about its effectiveness.Gimmick or Not, Vibrating Platforms Have Joined the Gym
But maybe it’s not so silly, exercise physiologists say. Although they don’t really know why vibrations should work, researchers report that they actually seem to slightly improve performance in the few minutes after a person gets off the machine.
The problem, though, is that there is little consensus on how fast the vibrations should be or in what direction platforms are supposed to vibrate. Some studies have failed to show any effects from vibrations. And then there is the question of what exactly vibrations are doing to muscles and nerves.
“It certainly is intriguing, and a large portion of the evidence would support that something is happening,” said Lee E. Brown, director of the Center for Sports Performance at California State University, Fullerton. But he added, “We are still trying to figure out exactly what the mechanism is.”

I know the first one failed but I think that if you are trying to get back proprioception this might be useful. I looked for gyms around here having this but no luck.
Four other possibilities:
1. Body Blades - I bought these but in order to get the vibration you need to be able to rapidly move your arm back and forth in a small arc. I currently only have gross movement so this didn't work.
2. Shake Weights - I tried this at a retailer and it has the same problems as the body blade.
3. Dynaflex Sports Pro Plus Gyro Wrist Exerciser - I bought this but it really does require two good hands to get the internal gyroscope spinning. For me I was looking for it to get proprioception going and the intrinsics of the hand.
4. Palm hand sanders. The random orbital kind. Mine is currently broken but I'll try it as soon as I get it fixed.

Remember, this is not something you should try without talking to your doctors.

Hand recovery and stroke rehab

My left hand is still pretty worthless I have looked all over for what to do about it and only came up with a few items.
What are the various options for rehabilitation of the hand? Neither my therapists or my doctors seem to have a good understanding of what the research points to as being the best way to accomplish this.

1.Saeboflex this looks like an outrigger on your hand with the springs pulling your fingers into extension.
Because the Saebo takes me 20 minutes to get on I don't use it very much. In the original Yahoo Saebo forum I complained about the bead chains being very hard to adjust one-handed and the Saebo representative said that they were not meant to be adjusted by patients, only trained therapists. This is poor planning on their part. They could easily change from bead chains to open chains with a hook to attach. The original research on this was for FTM(functional tone management) http://www.allied-services.org/files/PRSaeboFlex.pdf
I actually changed the velcro straps from the side they were on to the opposite side because tightening them was much easier for myself, it seems they were positioned that way for the therapist/caegiver to use rather than a one-handed patient. I also had to get a new outrigger for my thumb, still not quite positioned right.
2. Theraband makes progressive hand trainer sheets with prepunched holes for your fingers. You put the sheet into an embroidery hoop, the one that comes with the kit doesn't work, so buy a 7 or 9 inch embroidery hoop. none of the individual sheets were strong enough to keep my fingers open, so I used all six that came in the red refill pack and put them into one hoop. Once I get the flexors tired out I work on various finger movements. A lot cheaper than the SaeboFlex and probably just as good, except for maybe needing to anchor your thumb on the ring. This probably has no clinical support or research, just something I came up with myself. But I can get it on in less than a minute.
http://www.thera-band.com/store/products.php?ProductID=22
I personally think the Theraband hand-trainer sheets put into a crochet ring are at least as good and they also allow intrinsic muscle workouts. Actually tone is not triggered by exercising spastic muscles, therapists who say this have not been following the latest research. You should actually exercise those muscles to tell your brain that they are being controlled.
3.I got my own eStim machine, works great when I get around to using it. My hand will eventually come around but I'm focusing on arm and walking first. Allegro Medical #77715
4.Passive flexing and unflexing the fingers with my right hand. Right now I use the passive movement theory of flexing/unflexing my fingers hundreds of times each day. This is because I am into the hard neuroplasticity part, moving functions around rather than the easy neuroplasticity of just getting the penumbra to work better.
http://www.ncbi.nlm.nih.gov/pubmed/15003755
5. Hand Mentor for Stroke Patientshttp://www.kineticmuscles.com/hand-physical-therapy-hand-mentor.html
I have no idea if this is any good, I have never heard of any survivor talking about it.
6. Hand Helper I received one of these from my OT and would spend minutes willing my hand to relax. Getting the rubber bands on requires a two-handed person. At one time I saw on the internet a version of this that had it spaced out for individual fingers, but I didn't bookmark it. If someone sees this send me a link
http://www.amazon.com/Med-Dev-Ultimate-Hand-Helper/dp/B000SOLDJ0/ref=wl_it_dp_o?ie=UTF8&coliid=I3A77PN6KHG76B&colid=3Q7JDNQZ8LB7Z
7. Gripmaster I bought a couple of light resistance ones but they don't work for me because I can't separate my fingers enough to use them.
http://www.amazon.com/Gripmaster-Exerciser-Medium-Tension-7-Pounds/dp/B0006GC5D8
8. the ADL way, which is since you can do everything you need singlehandedly you do not need therapy for your hand.
And thats all folks.

My OT mentioned one of her patients that got his hand back after 5 years. No explanation of what he did.
Most patients that have motor deficits in the hand do not seem to have any guidance about the way to recover. I can go to all the stroke forums and see that lots of persons are complaining about not being able to get hand function back
I have heard about SaeboFlex, Mental imagery, Mirror box therapy, Bioness, Biomove and just waiting, hoping it will improve which seems to be the preferred method for the insurance companies and HMOs.

But then this is all just an uninformed opinion of mine. You need to go back to your doctors and therapists and say you are going to ask how to recover the hand every day you see them. Start putting the pressure on, they are supposed to be working for you.

multitasking and stroke rehab

 This was from petitep from DailyStrength.
It was so good it needed  to be passed on.
http://www.dailystrength.org/c/Stroke/forum/680277-improving-shortterm-memory
I started typing this as a reply to someone in another topic area and later thought it would be good to have it's own topic...
It was in reference to someone having short-term memory issues and being denied speech therapy..
Here are a few things I learned in speech therapy and now I'm good to go unless it's in a conference or (too much information too fast - needing more time to process) situation where I don't have one on one interaction with someone.
The reason he forgets quickly is because he's trying to multi-task. Us frontal lobe stroke people have short term memory issues and we cannot multi-task in it's simpliest forms...
Speech will teach him NOT to multi-task in it's simpliest forms. Such as "thinking of other things while hearing something else. Prior to my speech therapy, I couldn't hear and watch the therapist type at the same time she wanted me talk, ( I couldn't complete a sentence thought process or could retain the information she was asking long enough for a complete sentence to be said) because in it's simplist form it's multi-tasking. The distractions of doing more than one thing at once is too hard. (seeing thinking, hearing background sound or whatever it may be is all one more task at hand and short term memory people can't multi-task) Bring it down to the simplist forms..
When there is background sound or other things happening we go into "overload status" really fast, or multi-tasking when getting ready to walk out the door for instance, or coming in with groceries etc...)
When ALL is quiet, no surrounding sounds in the house or distractions. Have him stare you in the face when you are giving him instructions an instructions as long as it's not a long sentence (start with repeating simple words... and say three words, (apple, juice, flower) then four and five words- find out where his ceiling is = at the moment) or something you want him to remember in 1 minute. But get his UNDIVIDED attention, you cannot do this otherwise, we stroke people are like ADD people, we will forget if you don't have our undivided attention)
Then start saying... (I put the keys in the dish = let him put the keys there = he will remember it better then, always putting it in one spot) Start off with having him remember something in 15 second increments, 20 second, 1 minute, and so on... If he can retain it keep increasing the time, and going back to the same group of words until he's mastered it... then introduce one more thing (see below) or do something else and keep going back to the same words... (apple juice and flower work up to as far as he can get... 30 minutes or an hour is ideal. THEN he has learned to put it into his LONG TERM memory, by repeating it or knowing he has to remember it that far down the road... 30 minutes is a long time.
IF he does NOT retain it, the first time you ask him, at the 15 second mark, ask him "what other thoughts were in his mind when you said... a,b,c He will probably not even know because he's not aware, but you have to be aware of it... EVEN if it's a simple glance away (and not looking at you in the eyes) and he glanced past your shoulder to see something on the wall... He will NOT retain the information you are asking him at that exact moment. That little "glance was considered MULTI-TASKING when he was suppose to be paying attention to you.
For that half second (during this time he will not retain anything - then with the last half of a sentence if you're talking to him he is trying to figure out what he lost and he'll just go into "overload status" and will get lost and not have a clue of whats said.. trying to play "catch up"
You have to clue and zone in on him... even if his eyes move the slightest and not starting to pay attention... even if he's internally thinking of something else that was happening prior to you asking him and he thought of that while you're talking. (Such as if the baby needed something or if he came in from kitchen and he tried to hear if the faucet is running... Again, all of this is considered multi-tasking".
You're trying to increase his attention span and reteach him how to listen. He needs to learn to "clear his head" completely of ALL thoughts, stare at you and concentrate at what you are saying, no glancing away or looking out a window. My speech therapist pounded on me everytime I did something without me even realizing I was doing it. You have to make him aware that he's even doing it, once he has that, he'll start doing it on his own.
It may take many many times of practicing this... IF he can accomplish that, and remember.... He is then on his way of getting a better short term memory.
You have to "re-train his brain" how to receive incoming information. If someone is talking, he has to learn how to STOP everything and listen iwth NO outside influnces. Same goes for putting his keys down. nothing else counts, when he places his keys he has to clear his head.
After the 3 words or three numbers, you can progress into sentences or "where did you just put the keys? after he just placed them there.
He has to LOOK, STARE and CONCENTRATE and REPEAT in his mind "I'm PLACING THESE KEYS HERE" or I'm keeping them in my hand until I place them here" Putting his keys in the SAME PLACE each time. It is only then he will start remembering. Do this exercise with him in 1, 5, 10 and 30 minute increments... He probably has the memory to do it in 30 second increments, (if he doesn't do the same as above, what were you thinking, because he wasn't concentrating on this solely if he doesn't remember 15 seconds after he placed them) you will need to practice this consistently and see if they work. Do it for him, remind him he's doing it then reinforce it by you asking him, then he has to reinforce it by him telling you.
I was also having issues when it went past 2 minutes, when she asked, "tell me what time it is in 1 minute, we stroke (right side) don't have a perception of time and distance... we don't know if 2 minutes or 10 minutes has passed or 30 and 45 minutes... or... (miss by a half or quarter inch when pushing a shopping car and we'll push it right into the door jam)
If he can progress and tell you when 30 seonds has passed, that means he has remembered in 1 or 3 or 5 minute increments or... IF he does not remember you need to bring that to his attention so he can start remembering on his own...
I hope this has helped... Let me know how it works out or if anybody has anything to add or to make additional comments.

Annual Senior Citizen test

With thanks to Gulchman Notes for sending this around again.
http://handicapcafe.net/Blog/

“It’s that time of year to take your “Annual Senior Citizen test.” Probably a good one for us stroke-addled persons also, I flunked at the cow.
Exercise of the brain is as important as exercise of the muscles. As we grow older, it’s important to keep mentally alert. If you don’t use it, you lose it! Below is a very private way to test your loss or non-loss of intelligence. Take the test presented here to determine if you’re losing it or not. The large spaces below are so you don’t see the answers until you’ve made your answer.

OK, relax, clear your mind and begin.

1. What do you put in a toaster?

Answer: “bread,bagel or biscuits ” If you said “toast,” give up now and go do something else. Try not to hurt yourself. If you said, bread, go to Question 2.

2. Say “silk” five times. Now spell “silk.” What do cows drink?

Answer: Cows drink water. If you said “milk,” don’t attempt the next question. Your brain is over-stressed and may even overheat. Content yourself with reading a more appropriate literature such as Auto World or Family Circle or Redbook. Mad magazine is way out of your league. However, if you said “water”, proceed to question 3.

3. If a red house is made from red bricks and a blue house is made from blue bricks and a pink house is made from pink bricks and a black house is made from black bricks, what is a green house made from?

Answer: Greenhouses are made from glass. If you said “green bricks,” why are you still reading these???

If you said “glass,” go on to Question 4.

4. It’s twenty years ago, and a plane is flying at 20,000 feet over Germany (If you will recall, Germany at the time was politically divided into West Germany and East Germany.) Anyway, during the flight, TWO engines fail. The pilot, realizing that the last remaining engine is also failing, decides on a crash landing procedure. Unfortunately the engine fails before he can do so and the plane fatally crashes smack-dab in the middle of “no man’s land” between East Germany and West Germany. “Where would you bury the survivors? East Germany, West Germany, or no man’s land”?

Answer: You don’t bury survivors.

If you said ANYTHING else, you’re a dunce and you must stop NOW! If you said, “You don’t bury survivors”, proceed to the next question.

5. Without using a calculator – You are driving a bus from London to Milford Haven in Wales… In London, 17 people get on the bus; In Reading, six people get off the bus and nine people get on… In Sweden, two people get off and four get on… InCardiff , 11 people get off and 16 people get on… In Swansea, three people get off and five people get on… In Carmarthen, six people get off and three get on… You then arrive at Milford Haven. What was the name of the bus driver?

Answer: “Oh, for crying out loud!”

Don’t you remember your own name? It was YOU!!

Now pass this along to all your friends and pray they do better than you.
One person I was corresponding with said ' You don't have dementia if you forget why you came to the refrigerator, you may have it if you forget what the refrigerator is for.'

Remember even something like this is dangerous so make sure you ask your doctor for permission first. Don't even think about self-diagnosing. I heard a statistic that 40% of doctor diagnosed Alzheimer cases were wrong.

spasticity exercise

My therapists also did not recommend exercising spastic muscles but that is an incorrect assumption now. here is an article on it about CP which i think also applies to stroke spasticity.
http://www.ncpad.org/exercise/fact_sheet.php?sheet=107&section=813
This book also reports on the controversy.
Motor control: translating research into clinical practice
Anyway, now I try to exercise every muscle on my affected side even if the form doesn't look good.

Brunnstroms stages of recovery - spasticity

http://www.ncbi.nlm.nih.gov/books/bv.fcgi?indexed=google&rid=physmedrehab.section.726
Brunnstrom (1966, 1970) and Sawner (1992) also described the process of recovery following stroke-induced hemiplegia. The process was divided into a number of stages:


Brunnstrom (1966, 1970) described the process of recovery following stroke-induced hemiplegia. The process was divided into a number of stages:
Synergy. A whole series of muscles are recruited when just a few are needed. Trying to reach forward, The arm wings outward, the shoulder lifts, the wrist curls down. Lots of this is from spasticity

1. Flaccidity (immediately after the onset)
No "voluntary" movements on the affected side can be initiated
2. Spasticity appears
Basic synergy patterns appear
Minimal voluntary movements may be present
3. Patient gains voluntary control over synergies
Increase in spasticity
4. Some movement patterns out of synergy are mastered (synergy patterns still predominate)
Decrease in spasticity
5. If progress continues, more complex movement combinations are learned as the basic synergies lose their dominance over motor acts
Further decrease in spasticity
6. Disappearance of spasticity
Individual joint movements become possible and coordination approaches normal
7. Normal function is restored

Where are the answers to this?
A lot of problems here are because spasticity is subjectively measured, if you can't properly measure something you can't figure out how to fix it.

spasticity rant and stroke rehab

This was when I first started researching on it in 2006, still no answers.

Sorry about ranting on spasticity. I guess if I look at it objectively I have a mild form, it is just that if I was truly paralyzed and only had to recover function instead of suppressing spasticity/tone first and then work on the paralyzed muscle it would be much easier. I have done both baclofen and zanaflex which didn't help the spasticity at all, just made me tired so I quit them. I have had several rounds of botox which helped with knocking out my bicep so my tricep could start working. Finger flexors were also knocked out but since my finger extensors need to move control to a different spot in my brain that didn't result in any improvement.
This was one of my early posts on lots of stroke forums. No one responded with any decent information

Found an interesting site Movement Disorder Virtual University that has lots of detail on spasticity. Here is the link http://www.mdvu.org/library/disease/spasticity/spa_mpath.asp
If you follow it down quite a few levels you can find this
Subject: Incidence and Consequences of Spasticity After Stroke

Date: 2/20/2004

Spasticity affects less than one quarter of stroke victims, according to this study.
Muscle overactivity and its consequences were assessed in 95 patients both immediately after and three months a first-time stroke. Seventy-seven (81%) were initially hemiparetic, of whom 20 had spasticity. Among these 20 patients, 14 had hyperreflexia. Within these patients, 3 had clonus, and 3 had muscle stiffness. Modified Ashworth score was grade 1 in 10 patients, grade 1+ in 7, and grade 2 in 3. None had grades of 3 or 4. At three months, 64 patients (67%) were hemiparetic, and 18 spastic, reflecting 5 whose tone normalized and 3 who became spastic in the interim. The correlation between muscle tone and a range of motor and activity scores was low for most measures at both time points, except for active movements initially, and rapid movement scores and 9-Hole Peg Test scores at three months.
The authors conclude, “spasticity seems to contribute to motor impairments and activity limitations and may be a severe problem for some patients after stroke,” but, given the relatively low numbers of patients with spasticity, they note, “Our findings support the opinion…that the focus on spasticity in stroke rehabilitation is out of step with its clinical importance.

Basically since only 25% of stroke survivors have it and most seem to be able to do ADL's, clinical research seems unlikely. So we are on our own unless we can somehow change that mindset.

As a final comment, my ADL's are just fine. If I can get past the spasticity I can start doing all the normal stuff I did pre-stroke which is why I am extremely interested in this.

Acceptance of stroke deficits

Never,never, never.
I haven't gotten to the acceptance part yet, where I am comfortable in where I'm at. I have gotten to the acceptance of the fact that for the rest of my life I will probably always be tired and needing to use 100% of my brain all day/every day. There are still advances but they are almost impossible to measure. If I notice  something not working right I'll  try something to mimic  the movement and then add that to the mile-high list of exercises I should be doing every hour of the day.
Of course according to therapists this would mean I am in denial.

Finalist for Medgadget 2010 blog awards - polls are open

I found out today that Dean's Stroke Musings has been chosen as one of five finalists for Best Medical Weblog in the patient category in the 2010 Medical Weblog Awards, hosted by Medgadget.
I am thankful to be in such company. Check out all the finalists here. http://www.medgadget.com/archives/2011/01/the_2010_medical_weblog_awards_finalists_sponsored_by_epocrates_and_lenovo.html
Voting is from Thursday, Feb 3 to Sunday, Feb 13.

Polls Are Open in The 2010 Medical Weblog Awards Sponsored by Epocrates and Lenovo

You can vote here: scroll down a bit
http://www.medgadget.com/archives/2011/02/polls_are_open_in_the_2010_medical_weblog_awards_sponsored_by_epocrates_and_lenovo_1.html

Thanks to the 34 people who voted for me. I did come in 4th out of 5 by 1 vote. Wheelchair Kamikazee won with 864 votes

deep brain neurons and stroke rehab research

Visualizing neurons in the deep brain. This technology
sounds like a fascinating way for stroke researchers to
watch neuroplasticity take hold. Between deep brain neurons, connectomics,
and array tomography, one of these should be required for
researchers to prove that therapies work.
Stanford scientists have devised a new method that not only
lets them peer deep inside the brain to examine its neurons
but also allows them to continue monitoring for months.
Because light microscopy can only penetrate the outermost
layer of tissues, any region of the brain deeper than 700
microns or so (about 1/32 of an inch) cannot be reached by
traditional microscopy techniques. Recent advances in micro
-optics had allowed scientists to briefly peer deeper into
living tissues, but it was nearly impossible to return to
the same location of the brain and it was very likely that
the tissue of interest would become damaged or infected.
With the new method, "Imaging is possible over a very long
time without damaging the region of interest," said Juergen
Jung, operations manager of the Schnitzer lab. Tiny glass
tubes, about half the width of a grain of rice, are
carefully placed in the deep brain of an anaesthetized
mouse. Once the tubes are in place, the brain is not exposed
to the outside environment, thus preventing infection. When
researchers want to examine the cells and their interactions
at this site, they insert a tiny optical instrument called a
microendoscope inside the glass guide tube. The guide tubes
have glass windows at the ends through which scientists can
examine the interior of the brain.
"It's a bit like looking through a porthole in a submarine,"
said Schnitzer.

Succeeding at getting up again after failure

Succeeding at failure(the original title) not quite correct
In order for me to recover I will have to neuroplastically modify my brain and in order to do that I will probably have to get up after failing millions of times for each muscle control. As long as I can get up again and fail all over again. 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?
I will succeed at failing and trying again.

What do you feel like on your stroke rehab journey/caregiving?

Billk from strokenet referred to it as 'one big biology experiment, with me in the bottom of the Petri dish'
Ethyl17 from strokenet  'In space, no one can hear you scream'.
A friend from Australia put in a presentation to a stroke conference. 'It seemed like I was the first person on this journey.'
My take is something my dad sometimes used to say 'Up sh*t creek without a paddle'. I finally did manage to buy a t-shirt from the Sh*t Creek Paddle Company. This is kind of what I as a stroke survivor feel like. No directions and no propulsion aids. And no towing service available.
Notice the backstroke--->
Whats your take? I'm sure there are other equally subversive and pungent ones. Please add some more, I'm collecting them for letters I want to write.
Dean

Gait and stroke rehab

I know that this is stepping on PT responsibilities but I think that all PTs and OTs should have to produce something like this for their patients. Take this with a grain of salt, I do not intend this as medical advice, but education for yourself so you can be a better patient.
When I first got out of the hospital, still in a wheelchair I would sit staring at people walking to see what they were doing right that I couldn't do. My PTs did not have any videos of human gait that would have helped me understand where I was going wrong, all I got was do it this way with no breakdown into smaller pieces. I finally fired that PT and went to one that could at least see what was going wrong. here are some videos I found on the internet if you want to try and look at them and improve on your own.
Also read a complete textbook on human gait, way over my head but at least it gave me a few muscle groups to strengthen at the gym. I still waddle but the leg swing out is significantly reduced.
Gait Analysis: Normal and Pathological Function
by Jacquelin Perry, Bill Schoneberger
Besides a human walking there is a model you can slow down, speed up and turn
http://www.frontiernet.net/~Imaging/gait_model.html
coordination normal gait
Movies from the NeuroLogic Exam and PediNeuroLogic Exam websites are used by permission of Paul D. ****, M.D., University of Nebraska Medical Center and Suzanne S. Stensaas, Ph.D., University of Utah School of Medicine. Additional materials were drawn from resources provided by Alejandro Stern, Stern Foundation, Buenos Aires, Argentina; Kathleen Digre, M.D., University of Utah; and Daniel Jacobson, M.D., Marshfield Clinic, Wisconsin. The movies are licensed under a Creative Commons Attribution-NonCommerical-ShareAlike 2.5 License.

• Biomechanics of gait walking

http://www.utoledo.edu/hshs/kinesiology/pdfs/Biomech_of_Walking_and_Running.ppt#257,2,Biomechanics of Gait Walking
http://www.cse.ohio-state.edu/research/ ... index.html
A comparison of normal and stiff-legged gaits.This one even includes some stair walking
http://www.youtube.com/watch?v=wkYMLidUO-A
Contains the skeleton walking
http://www.youtube.com/watch?v=8s0FY4D_ ... re=related

• Biomechanics of the foot http://www.footkneepain.com.au/

• Muscle Activation During Gait

http://www.youtube.com/watch?v=GV6CAZiv5Zo&feature=endscreen&NR=1

• Primal Pictures human anatomy demo

sitting to standing, toe flexing, head turning
http://www.youtube.com/watch?v=1Ohpyc2K ... re=related

• Some free demos available here

http://www.anatomy.tv/

• Running robot

http://www.youtube.com/watch?v=sv35ItWLBBk

• animated gait in slow motion

http://www.nsf.gov/news/mmg/media/media/gait_final1.swf
movement analysis here go to site map/gallery
http://www.musculographics.com/index.html
demo video looks good I wish all therapy depts. could have this in order to break down exactly what stroke survivors are doing wrong so the indivdual pieces could be corrected.
http://kine.is/modules.php?op=modload&n ... load&cid=2

• This gives the various phases of gait

http://moon.ouhsc.edu/dthompso/gait/intro.htm
A lot of this is very pertinent to me because my pre-motor cortex is dead, which means planning of complicated movements is not being automatically done so I have to manually think about and fire the individual muscles. Of course this is my own self diagnosis, which the patient should never do.
http://www.lowerextremityreview.com/news/in-the-moment-stroke
Now if we could get the 3d movements and stroke rehab mapped to standard walking then we might get to where a damage diagnosis could be correlated with the therapy prescriptions.

Who's in charge of Stroke rehab research?

A great philosophical question that hundreds of thousands of Americans each year need answers to. According to the national Stroke Association there are over 6 million US survivors.
I can't talk about other country stroke associations but in my limited view they seem to be for medical staff only with a bone thrown to survivors with stroke support groups.
The ASA has no place to find out what research it supports and no survivor office.
The NSA has no place to find out what research it supports and no survivor office. It does have an Advovacy office http://www.stroke.org/site/PageServer?pagename=advocacy
This seems to be more tuned to what the NSA wants rather than what survivors may want. I contacted Jill Thiare because her name was listed in one of the emails.
advocacy@stroke.org was also listed as a contact email address but that one doesn't work. My question to them was: How do I advocate what the NSA does?
Your mission statement is as follows:
"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."
You are failing in the part about rehabilitation and survivors. All you want survivors for is to advocate for your goals. Your goals are not the same as a survivors goals.
No answer on how survivors get involved in the NSA except as volunteer gofers.
The World Stroke Organization has no survivor office.
The APTA seems to have no way for users of PT services to interact with the organization.
The AOTA seems to have no way for users of OT services to interact with the organization.
What we really need is a truly survivor based and run organization. Numerous individuals have set up their own forums and web pages but there is no cohesive understanding of where stroke rehab should go. If we don't do something now the baby boomers coming down the line will have nowhere to go to to get decent information. Similar to what we have now where everyone assumes that your spontaneous recovery is good enough for you.
No one is taking responsibility.
Who will step up to the plate? ANYONE?

The Canoe Race as Stroke rehab

Ok this really has nothing to do with rehab but Barb, another stroke blogger, does row and I do want to get back to canoeing.

The Canoe Race:

Toyota vs. Ford

Anonymous Author

Pages of "The Paper"

Toyota and Ford decided to have a canoe race on the Missouri River. Both teams practiced long and hard to reach their peak performance before the race.

When the race was over, the Japanese team won by a mile.

The American team was very discouraged and depressed. They decided to investigate and find a reason for the crushing defeat. A team made up of senior management was formed to find the problem and recommend appropriate action.

The team’s conclusion was: The Japanese team had eight people rowing and one person steering while the American team had eight people steering one person rowing.

Feeling a deeper study was needed, the American management team hired a consulting company for a second opinion, paying them a lot of money.

The consulting company advised the Americans that, of course, there were too many people steering and not enough people rowing.

Wanting to prevent another loss to the Japanese, the rowing teams management structure was totally reorganized to:

-Four steering supervisors

-Three steering area superintendents

-One assistant superintendent steering manager

Also, the management team implemented a new performance system that would give the one person rowing the boat greater incentive to work harder. They called this incentive, “The Rowing Team Quality First Program,” with meetings, dinners, and free pens for the rower. They got new paddles, canoes, more equipment, and extra vacation days and bonuses.

The Japanese won the next race by two miles.

Humiliated, the American management team laid off the rower for poor performance, halted the development of a new canoe, sold the paddles, and canceled all capital investments for new equipment. The money saved was distributed to the Senior Executives as bonuses. Also, the next racing team was outsourced to India.

There is a definite problem with this joke, they talk about rowing which is this case would mean an eight person shell. So the term canoe is wrong and they would be getting new oars rather than paddles.

anatomy and stroke rehab

Your OT and PT probably rattle off muscle names assuming that you know exactly what they are talking about. Of course you know that your calf muscle is triceps surae and is a pair of muscles located at the calf. The gastrocnemius and the soleus. The muscle you can't control that causes dropfoot is your Tibialis anterior muscle , otherwise known as lack of dorsiflexion. I could keep going but the point here is that having an understanding of what muscles are problematic is needed in order to mentally imagine and neuroplastically move control to a new area. The best book I found for this is 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. Bodybuilding books would be a good second choice and available at all libraries.
If we ever get to a damage diagnosis where our doctors specify exactly what sections of the brain are damaged then our therapists could use that diagnosis along with anatomy diagrams to show you exactly what you need to work on. Either easy neuroplasticity, from the penumbra or the draining bleed area, or hard neuroplasticity, moving dead brain function control to another location. And if you are lucky and smart enough you won't canabalize your executive control to get back motor movement.

rowing and stroke rehab

We have a rowing machine in our basement, sometimes called an ergometer. This past week I started using it again. The various therapies involved are turning on two light switches with my affected hand, it looks ugly but what the hell. Walking down the steps does still require that I put my good hand against the wall as I come down. My form on the rower is pretty much straight-armed, this is on purpose, to lessen and counteract the spasticity of my left arm. I do still use the spasticity of my curled left fingers to keep a grasp on the handle. The back and forth on the slide strengthens my quads and the slide up works my hamstrings. Currently only doing 750 meters. I'll work my way up to the race length of 2500 meters in the next couple of weeks. After I am done with my workout I just use my left leg to go back and  forth on the slide, mainly to get the hamstring working better.
I tried this at the gym, but most of the other persons on the rowers are trying too hard and grunting while doing it.

I am trying to get 'ripped'. You know those balloon-headed aliens on science-fiction shows. I figure I will be able to start looking like them if I work at this enough. That would really appeal to those working out at the gym. Especially those pulsing veins on the forehead, that would look good with my baldness.

3d movements and stroke rehab

A new research center at Stanford will address mobility disorders with powerful 3-D simulations of a patient's movements
http://news.stanford.edu/news/2010/december/delp-movement-research-123010.html
I did have this done as part of a research study I was in on ankle movement but was not able to see those results. I could see an extremely important use for this for all PTs working with stroke gaits. And maybe then someone will be able to identify very specific small movements to work on. My first PTs could only demonstrate the correct way to walk and since my walking was pretty screwed up their admonitions didn't work.

Or if your therapist does not have quite such a high-tech item maybe this would work
Could Your Clinic Benefit From Slow Motion Video Analysis?

This does mean your therapist will have to get outside off their comfort zone because this would mean working on individual muscles rather than their training of complete functional movements.

In one of Uncle John's Readers my daughter told me that it took 200 muscles in order to walk. I just thought, 'Oh great, I have to relearn 100 of them'. But if these technologies could be used for hemiplegic gaits then they could tell me specifically which muscles are spastic and which ones are weak or missing. Well I can dream about the future of rehab. If only I was in charge.

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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HubPages.com
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Pictures, text, privacy controls
Free, easy, fun & safe. Start today
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.