Deans' stroke musings

Changing stroke rehab and research worldwide now.Time is Brain!Just think of all the trillions and trillions of neurons that DIE each day because there are NO effective hyperacute therapies besides tPA(only 12% effective). I have 493 posts on hyperacute therapy, enough for researchers to spend decades proving them out. These are my personal ideas and blog on stroke rehabilitation and stroke research. Do not attempt any of these without checking with your medical provider. Unless you join me in agitating, when you need these therapies they won't be there.

What this blog is for:

Shortly after getting out of the hospital and getting NO information on the process or protocols of stroke rehabilitation and recovery I started searching on the internet and found that no other survivor received useful information. This is an attempt to cover all stroke rehabilitation information that should be readily available to survivors so they can talk with informed knowledge to their medical staff. It's quite disgusting that this information is not available from every stroke association and doctors group.
My back ground story is here:http://oc1dean.blogspot.com/2010/11/my-background-story_8.html

Saturday, November 27, 2010

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?

Friday, November 26, 2010

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;
http://oc1dean.blogspot.com/2010/12/late-start-to-stroke-therapy.html

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.

Wednesday, November 24, 2010

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.

Friday, November 19, 2010

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.

Thursday, November 18, 2010

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

Tuesday, November 16, 2010

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.

Saturday, November 13, 2010

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?'

Thursday, November 11, 2010

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.

Tuesday, November 9, 2010

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
Technically, The Glass Is Always Full

Monday, November 8, 2010

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 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.

My take on stroke rehab forums

I received no useful information from my medical staff while in the hospital and considering all the forums out there I don't think anyone else has either. As one forum creator(Tom Haynes) said 'There is a scarcity of good, patient-friendly information readily accessible to stroke patients.' Even these Q&As are not very good because finding useful information is difficult. You could ask your question but then you are hoping that a survivor out there on that site has the same problem and has already overcome it and is willing to answer. I have tried to get several of the forum owners to set up a wiki-style compendium of stroke rehab information. But no luck so far. Build it and they will come, someday someone will do this and stroke survivors will be thankful.
For basic support these can be very good to find persons that can empathise with you.

http://strokesurvivorsandcaregivers.ning.com/ I got kicked out of this one
http://livingwithstroke.ning.com/forum
http://hope4stroke.ning.com/
http://www.strokeboard.net/ This one is very active but I can't get at it from work(blocked)
If you want to branch out around the world try these, If others are out there please send them to me.
British
http://www.stroke.org.uk/applications/discussion/
http://www.stroke-survivors.co.uk/forum/topics.aspx?ForumID=1
Australian
http://www.strokefoundation.com.au/strokeconnect/index.php

Two PT boards that have some useful information. Don't expect answers if you put out a question there as a survivor. I tried several times and failed, so now I just lurk.
http://www.physiobob.com/forum/neuro-physiotherapy/
http://www.somasimple.com/

Saebo has its own forum but very inactive.
http://forum.saebo.com/
The following I used to post on but have dropped off.
http://www.healthboards.com/boards/forumdisplay.php?f=119 I got reprimanded here one too many times, they can survive without me.
http://www.medhelp.org/forums/Stroke/show/62
http://www.dailystrength.org/c/Stroke/support-group
The AHA/ASA one is actually pretty worthless because it is overrun by spam and the ASA doesn't seem to care. Some of the posters on there are very good so if you want to use this one you will need to contact someone in the ASA to actually care about and cleanup the forum. Don't expect any ASA employees to be on there.
https://myportal.americanheart.org/jiveforum/index.jspa
The WEMove is only useful for the spasticity forum but is not active.
http://www.wemove.org/cgi-bin/ultimatebb.cgi?/ubb/login.html

The following ones have some forums but I never really became active on any of these. You might have better luck.

Disaboom has postings on strokes but I never could easily find the forum that
supports it.
http://www.disaboomlive.com/
eHealth I never used much
http://ehealthforum.com/health/stroke_symptoms.html
Steady health I never used much
http://www.steadyhealth.com/search.cgi?q=stroke&cmd=Search%21&m=any
http://www.revolutionhealth.com/forums/brain-nerves/stroke
http://www.wellsphere.com/wellpage/support-group-and-forum-on-stroke
I used to post on here but the site changed my id and password a few times
http://exchanges.webmd.com/stroke-exchange
http://www.mdjunction.com/stroke
http://www.neurologychannel.com/stroke/diagnosis.shtml

I used to make the rounds every day to see if any of these had new/good information. Finally decided that I was better off on my own blog because no one would ever ask specific enough questions that I had knowledge about

Friday, November 5, 2010

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.

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.

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.

Thursday, November 4, 2010

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

Wednesday, November 3, 2010

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

Tuesday, November 2, 2010

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.

Monday, November 1, 2010

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.