I have been reading a new book, Deep Survival : Who Lives, Who Dies and Why by Laurence Gonzales.This paragraph on page 82 I think should be applied to us stroke survivors.
Psychologists who study survival say that people who are rule followers don't do as well as those who are of independent mind and spirit. When a patient is told he has 6 months to live, he has two choices: accept the news and die, or rebel and live. People who survive cancer in the face of such a diagnosis are notorious. The medical staff observes that they are 'bad patients',unruly, troublesome. They don't follow directions. They question everything. They're annoying. They're survivors.
Make yourself into a 'bad patient'.
Remember, make sure you ask your medical staff for permission to be a 'bad patient'.
If you don't make your medical staff uncomfortable in their not answering your questions then you need to try harder. Make them feel guilty and maybe they will go back to their associations and ask for details on what to do for stroke patients. Nothing else seems to be working.
Friday, October 15, 2010
Is the stroke rehab research emperor running around naked?
Is the emperor wearing any clothes? I loved this parable. From all the research I have been reading I really can't tell if any of it is valid.
My concerns are;
1. There is no standardized definition of stroke damage. If you can't even define your starting point there is no way that research can be replicated.
2. No one seems to be separating the spontaneous recovery from the recovery due to therapy.
3. There aren't enough projects using scans to prove changes.
Maybe I am too stupid to comment on stroke research since million dollar words are used to keep us peons in the dark.
My concerns are;
1. There is no standardized definition of stroke damage. If you can't even define your starting point there is no way that research can be replicated.
2. No one seems to be separating the spontaneous recovery from the recovery due to therapy.
3. There aren't enough projects using scans to prove changes.
Maybe I am too stupid to comment on stroke research since million dollar words are used to keep us peons in the dark.
My Tai Chi exercises for stroke rehab
I took a tai chi class last year. A lot of the movements were too complicated for my abilities, all of the free swinging arm movements above my head were only possible in a compensatory way by using my right hand to grab my left and mimic the movement.
I was able to take some of the simpler moves and keep doing them after the class.
Elephant swing - hold both arms loosely at your side, rotate your body right and left letting your arms swing in front of and behind you. Due to the spastic left arm this looks rather stupid.
The wave - hold both arms at your sides, swing them forward and backward. I still can't do this, my brainpower is not enough to control two sets of muscles at once.
The bass drum - trace the outline of the rim of a bass drum clockwise and counter-clockwise in front of you. I clasp both hands together to do this.
The platter -trace the outline of the rim of a platter clockwise and counter-clockwise in front of you. I clasp both hands together to do this.
Natural stepping - stand on one leg and step forward and backward with the other one. I sometimes have to use my cane to stay balanced.
This is my personal exercise regime. Do not attempt any of these without checking with your medical providers.
I was able to take some of the simpler moves and keep doing them after the class.
Elephant swing - hold both arms loosely at your side, rotate your body right and left letting your arms swing in front of and behind you. Due to the spastic left arm this looks rather stupid.
The wave - hold both arms at your sides, swing them forward and backward. I still can't do this, my brainpower is not enough to control two sets of muscles at once.
The bass drum - trace the outline of the rim of a bass drum clockwise and counter-clockwise in front of you. I clasp both hands together to do this.
The platter -trace the outline of the rim of a platter clockwise and counter-clockwise in front of you. I clasp both hands together to do this.
Natural stepping - stand on one leg and step forward and backward with the other one. I sometimes have to use my cane to stay balanced.
This is my personal exercise regime. Do not attempt any of these without checking with your medical providers.
Thursday, October 14, 2010
My abbreviated Background story 2
I fell down walking across the bedroom floor that morning, May 21, 2006. I called to my wife, Sarah asking for help to stand up. She was already on the phone dialing 911 and answering the questions, drug use, high blood pressure, diabetes, overweight, All were negative. The paramedics came and asked the same questions mainly because there was this healthy looking 50 year old lying on the floor with some stroke symptoms. I spent the next 4 weeks in HCMC - Hennepin County Medical Center. In the Emergency room I received tPA, the clot busting drug,within the hour. I did not get the immediate miracle so the doctor said I would have to settle for the slow miracle recovery. I had Physical, Occupational and Speech therapy while there.Deficits from the stroke were left side paralysis. Mental cognition, eyesight and speech were not affected. By the time I left the hospital I could walk with a 4 point cane and AFO - Ankle Foot Orthotic. This occurred the day after returning from a strenuous 6 day whitewater canoeing trip on the Dog River, Ontario(23 miles and dropping 1050 feet with a 1.5 mile portage around a 120 ft. waterfall) and driving for 12 hours to get home. So the timing was fortuitous that I was at home when it occurred, (This website contains a slide show of a small part of the photos from that trip; http://www.rapidsriders.net/gallery2/main.php and then click on Album Dog River 2006, I am in the red canoe, my partners were Alan Faust in the purple canoe and Brian Johnston in the yellow canoe). My doctor speculated that I probably had a weak spot in the carotid artery and it was just a fluke occurrence. A later doctor speculated that plaque lifted up and tore. I don't believe I hit or twisted my neck hard enough on the trip to cause the tear. Update from April, 2008. I just had an ultrasound done and the artery that tore is now totally blocked, so I don't have to worry about that particular section anymore. There are three other arteries feeding the brain so it still gets enough blood.
Check out my MRI pictures lower in the blog and ask your doctor to see yours, at least 1 week after the event.
I have become fanatical about learning about everything to do with stroke since there is no one in the world that seems to know very much about it. A lot of this is to not have new survivors have to go thru the same 3 year learning process as I did.
Wednesday, October 13, 2010
What the hell makes you think you know more than your stroke rehab staff?
I get this question from my wife. Shes a PT so any questions questioning the medical profession are seen as an attack on her training.
For anyone else asking this question of me the answer is as follows. Hell yes, my original doctors proved that they were not keeping up with medical advancements. I live and breath thinking about this 24 hours a day. I have read numerous books on the subject and hundreds of research abstracts. I also read all the questions and answers on 12+ stroke forums on the web. Every stroke association web site is way too general to help any survivor. So I am arrogant enough not only to think I am smarter and more knowledgeable than my medical staff but I know I am. Read my post What my doctor should have told me about stroke recovery to get an idea where I think we should be going.
For anyone else asking this question of me the answer is as follows. Hell yes, my original doctors proved that they were not keeping up with medical advancements. I live and breath thinking about this 24 hours a day. I have read numerous books on the subject and hundreds of research abstracts. I also read all the questions and answers on 12+ stroke forums on the web. Every stroke association web site is way too general to help any survivor. So I am arrogant enough not only to think I am smarter and more knowledgeable than my medical staff but I know I am. Read my post What my doctor should have told me about stroke recovery to get an idea where I think we should be going.
Compensation vs. recovery stroke rehab
One of the things I wish my medical staff had mentioned to me was the difference between compensation and recovery. Compensation being doing whatever is necessary to accomplish a goal. Recovery is using the muscles as intended to accomplish the same goal. Insurance wants you to use compensation whenever possible because it is faster and cheaper. The best example I can give is I had a substitute OT and she asked for what my next goal was, I told her I wanted to be able to read a newspaper. She immediately proceded to place a sticky material(Dycem) on the table and put the newspaper on top of that to help with holding it in place as the pages were turned. This was compensating for my inability to open my left hand, keep my left wrist straight and hold my left arm up in the air. I didn't want to compensate, I wanted to figure out how to hold the paper and read it with two hands. She took the easy way out and marked it as accomplished. 4 years later I still can't do this the proper way but I have at least mapped out the necessary steps to finally accomplish this.
Peter Levine has a great blog post on this. What happens to your brain if you compensate.
http://recoverfromstroke.blogspot.com/2010/11/make-them-walk-funny-and-look-lousy-in.html
This is the great divide in what survivors want vs. what the therapists can work on because of insurance/HMO guidelines. Most survivors want complete recovery while therapists need to work on ADLs to be able to get paid. Insurance guidelines require that functional ability be able to be created/maintained within 4-6 weeks. If progress is not made then the dirty word - plateau - is brought up. Plateau is not a medical term, it is just used to deny further therapy. My workaround when I was still getting therapy was to set as a goal something I was already able to do. One goal was to be able to get on/off an escalator. I could already do it because I needed it at work. A goal my OT set for me was to use my left arm/hand to open the refrigerator at home. 4 years later I still can't do this because I can't open my fingers. So I compensate and use my right hand. The main one is the use of AFOs to compensate for the lack of dorsiflexon. By using most compensation strategies you are actually preventing recovery from taking place. So you need to make a decision on which route you want to go.
Peter Levine has a great blog post on this. What happens to your brain if you compensate.
http://recoverfromstroke.blogspot.com/2010/11/make-them-walk-funny-and-look-lousy-in.html
This is the great divide in what survivors want vs. what the therapists can work on because of insurance/HMO guidelines. Most survivors want complete recovery while therapists need to work on ADLs to be able to get paid. Insurance guidelines require that functional ability be able to be created/maintained within 4-6 weeks. If progress is not made then the dirty word - plateau - is brought up. Plateau is not a medical term, it is just used to deny further therapy. My workaround when I was still getting therapy was to set as a goal something I was already able to do. One goal was to be able to get on/off an escalator. I could already do it because I needed it at work. A goal my OT set for me was to use my left arm/hand to open the refrigerator at home. 4 years later I still can't do this because I can't open my fingers. So I compensate and use my right hand. The main one is the use of AFOs to compensate for the lack of dorsiflexon. By using most compensation strategies you are actually preventing recovery from taking place. So you need to make a decision on which route you want to go.
Monday, October 11, 2010
The fall
A couple of weeks ago I fell getting out of an elevator at work. Left foot drop caught on the transition. No damage except to my pride and a bruised kneecap. This was only the second time I have fallen walking since my event, the first time was walking on hard-packed snow at a cross-country ski lodge. This time it precipitated comments from both my wife(who is a PT) and daughter that my walking has deteriorated since giving up the AFO and I should start wearing it again. So I agreed that I would wear it at work and at home would not use it. Oh well, setbacks are to be expected. I had walked without the AFO since my canoe trip in 2009.
Friday, October 8, 2010
Book reading list for stroke rehab
Because I was told nothing I started reading to figure out what I could do for my recovery. This is the list of books I read and my thoughts on their usefulness.
Here are the books I've read on neuroplasticity. These are the ones that should be required reading.
The mind and the Brain : neuroplasticity and the power of mental
force / Jeffrey M. Schwartz and Sharon Begley.
Train Your Mind, Change
Your Brain: How a New Science Reveals Our Extraordinary Potential to
Transform Ourselves by Sharon Begley
The brain that changes itself : stories of personal triumph from the frontiers of brain science / Norman Doidge.
Neurological rehabilitation Carr, Janet H.
Stronger After Stroke by Peter Levine The best book by far. This one is worth buying
This one is about neurogenesis which I think the future of stroke rehab will be based on.
John J. Ratey, MD, author of Spark: The Revolutionary New Science of Exercise and the Brain.
Phantoms in the brain : probing the mysteries of the human mind / V.S. Ramachandran, and Sandra Blak
My Stroke of Insight by Dr. Jill Taylor
Change in the Weather: Life After Stroke by Mark McEwen
Don't Leave Me This Way: Or When I Get Back on My Feet You'll Be Sorry by Julia Fox Garrison
Still Here : embracing aging, changing, and dying / Ram Dass ; edited by Mark Matousek and Marlene Roeder.
Brain, Heal Thyself: A Caregiver’s New Approach to Recovery from Stroke, Aneurysm, And Traumatic Brain Injuries Madonna Siles
These are all personal accounts , they are good for seeing what persistence does but can't be looked at for help in determining if their methods might work for you. This is because none of them has any specific diagnosis of what areas of the brain died and which areas were damaged so you can compare their damage to yours.
Teaching Me to Run by Tommye-K. Mayer. If you want to run again, this one gives her step-by-step approach and shows a good way to analyze how to approach rehab.
Other books at least partially about stroke that I found useful;
Hippocrates' shadow : secrets from the house of medicine / David H. Newman. Good for realizing that doctors do not know everything.
Stretching / Bob Anderson ; illustrated by Jean Anderson.
While I can't do most of these I try to adapt these to loosen my spastic muscles.
The Whartons' stretch book : featuring the breakthrough method of active-isolated stretching / Jim and Phil Wharton with Bev Browning. This is the better of the two stretching books.
Anatomy of Movement by Blandine Calais-Germain This one came recommended from my OT. It helps me visualize what muscles are being used for what movements and has some excellent diagrams
of walking.
A motor relearning programme for stroke by Carr, Janet H.
clinical science of neurological rehabilitation,Bruce H. Dobkin
Willard and Spackman's occupational therapy.
9th ed. / [edited by] Maureen E. Neistadt, Elizabeth Blesedell Crepeau
Got some additional inhibition techniques for spasticity from here. Rood technique
Gait Analysis: Normal and Pathological Function
by Jacquelin Perry, Bill Schoneberger
The body has a mind of its own : how body maps in your brain help you do (almost) everything better / Sandra Blakeslee and Matthew Blakeslee
Sensory re-education of the hand after stroke by Yekeutiel, Margaret
Hand Recovery after Stroke, Exercises and Results Measurements by Johannes G. Smits, Else Boone Smits, and Else C. Smits-Boone Only useful if you still have some movement.
Hand and brain by Wing, Alan M. not very useful
The healing art of qi gong : ancient wisdom from a modern master / Hong Liu, with Paul Perry.
The survivors club : the secrets and science that could save your life / Ben Sherwood. This one had a statement that in a disaster, 10% of the people became leaders, 80% followed, 10% did nothing/gave up. So the choice is up to you;Are you going to be in the top 10%? I am.
Deep Survival : Who Lives, Who Dies and Why by Laurence Gonzales.
Psychologists who study survival say that people who are rule followers don't do as well as those who are of independent mind and spirit. When a patient is told he has 6 months to live, he has two choices: accept the news and die, or rebel and live. People who survive cancer in the face of such a diagnosis are notorious. The medical staff observes that they are 'bad patients',unruly, troublesome. They don't follow directions. They question everything. They're annoying. They're survivors.
Make yourself into a 'bad patient'.
Faster, better, stronger : 10 proven secrets to a healthier body in 12 weeks / Eric Heiden, Massimo Testa, and DeAnne Musolf.
One-Handed in a Two-Handed World (Second Edition) (Spiral-bound) by Tommye-K. Mayer
The luck factor : changing your luck, changing your life, the four essential principles / Dr. Richard Wiseman
The talent code : greatness isn't born. It's grown. Here's how / Daniel Coyle.
Talent is overrated Colvin, Geoffrey
Outliers: The Story of Success by Malcolm Gladwell
These three can be applied to stroke rehab, they essentially say that innate talent doesn't exist, it is all just focused practice, just like our massed practice therapy.
Rapt Attention and the Focused Life
Winifred Gallagher
Brunnstrom S. Movement therapy in hemiplegia:
a neurophysiological approach.
Bobath B. Adult hemiplegia: evaluation and
treatment,
Clinical Neuromythology and Other Arguments and Essays, Pertinent and Impertinent
Second Edition
By: William Landau
( this one I will never buy, I will not support him due to his misguided ideas on spasticity )
And here are the general brain knowledge ones:
The Three-Pound Enigma
Author: Shannon Moffett
A user's guide to the brain : perception, attention, and the four theaters of the brain
by Ratey, John J.
The secret life of the grown-up brain : the surprising talents of the middle-aged mind / Barbara Strauch This one was great because it supports the idea that middle-aged brains actually work pretty well.
Phantoms in the brain : probing the mysteries of the human mind / V.S. Ramachandran, and Sandra Blak
Evolve your brain : the science of changing your mind
by Dispenza, Joe
Rewire your brain : think your way to a better life
by Arden, John B.,
The Man Who Mistook His Wife for a Hat, Oliver Sacks
Ones I would like to read:
.
Being wrong : adventures in the margin of error / Kathryn Schulz
Peeling the Onion: Reversing the Ravages of Stroke
Striking Back at Stroke: A Doctor-Patient Journal
Stroke Rehabilitation - Guidelines for Exercise and Training to Optimize Motor Skill by Janet H. Carr and Roberta B. Shepherd
Acupuncture for Stroke Rehabilitation: Three Decades of Information from China
Rehabilitation of Paralysis Due to Apoplexy by Pan Chang
Clinical Science of Neurologic Rehabilitation
by Bruce H. Dobkin
Stroke Rehabilitation: Guidelines for Exercise and Training to Optimize Motor Skill Carr J, Shepherd R. Edinburgh: Butterworth-Heinemann; 2003, softcover, 301 pp. illus, ISBN: 0-7506-4712-4,
Textbook of Neural Repair and Rehabilitation
Acupuncture for Stroke Rehabilitation- Three Decades of Information from China by Hoy Ping Yee Chan
Upper Motor Neurone Syndrome and Spasticity, Clinical Management and Neurophysiology
Michael P. Barnes & Garth R. Johnson Eds
The Creating Brain
Author: Nancy C. Andreasen
A Brief History of the Mind
Author: William H. Calvin
7 Steps to a Healthy Brain
Author: Paul Winner
Here are the books I've read on neuroplasticity. These are the ones that should be required reading.
The mind and the Brain : neuroplasticity and the power of mental
force / Jeffrey M. Schwartz and Sharon Begley.
Train Your Mind, Change
Your Brain: How a New Science Reveals Our Extraordinary Potential to
Transform Ourselves by Sharon Begley
The brain that changes itself : stories of personal triumph from the frontiers of brain science / Norman Doidge.
Neurological rehabilitation Carr, Janet H.
Stronger After Stroke by Peter Levine The best book by far. This one is worth buying
This one is about neurogenesis which I think the future of stroke rehab will be based on.
John J. Ratey, MD, author of Spark: The Revolutionary New Science of Exercise and the Brain.
Phantoms in the brain : probing the mysteries of the human mind / V.S. Ramachandran, and Sandra Blak
My Stroke of Insight by Dr. Jill Taylor
Change in the Weather: Life After Stroke by Mark McEwen
Don't Leave Me This Way: Or When I Get Back on My Feet You'll Be Sorry by Julia Fox Garrison
Still Here : embracing aging, changing, and dying / Ram Dass ; edited by Mark Matousek and Marlene Roeder.
Brain, Heal Thyself: A Caregiver’s New Approach to Recovery from Stroke, Aneurysm, And Traumatic Brain Injuries Madonna Siles
These are all personal accounts , they are good for seeing what persistence does but can't be looked at for help in determining if their methods might work for you. This is because none of them has any specific diagnosis of what areas of the brain died and which areas were damaged so you can compare their damage to yours.
Teaching Me to Run by Tommye-K. Mayer. If you want to run again, this one gives her step-by-step approach and shows a good way to analyze how to approach rehab.
Other books at least partially about stroke that I found useful;
Hippocrates' shadow : secrets from the house of medicine / David H. Newman. Good for realizing that doctors do not know everything.
Stretching / Bob Anderson ; illustrated by Jean Anderson.
While I can't do most of these I try to adapt these to loosen my spastic muscles.
The Whartons' stretch book : featuring the breakthrough method of active-isolated stretching / Jim and Phil Wharton with Bev Browning. This is the better of the two stretching books.
Anatomy of Movement by Blandine Calais-Germain This one came recommended from my OT. It helps me visualize what muscles are being used for what movements and has some excellent diagrams
of walking.
A motor relearning programme for stroke by Carr, Janet H.
clinical science of neurological rehabilitation,Bruce H. Dobkin
Willard and Spackman's occupational therapy.
9th ed. / [edited by] Maureen E. Neistadt, Elizabeth Blesedell Crepeau
Got some additional inhibition techniques for spasticity from here. Rood technique
Gait Analysis: Normal and Pathological Function
by Jacquelin Perry, Bill Schoneberger
The body has a mind of its own : how body maps in your brain help you do (almost) everything better / Sandra Blakeslee and Matthew Blakeslee
Sensory re-education of the hand after stroke by Yekeutiel, Margaret
Hand Recovery after Stroke, Exercises and Results Measurements by Johannes G. Smits, Else Boone Smits, and Else C. Smits-Boone Only useful if you still have some movement.
Hand and brain by Wing, Alan M. not very useful
The healing art of qi gong : ancient wisdom from a modern master / Hong Liu, with Paul Perry.
The survivors club : the secrets and science that could save your life / Ben Sherwood. This one had a statement that in a disaster, 10% of the people became leaders, 80% followed, 10% did nothing/gave up. So the choice is up to you;Are you going to be in the top 10%? I am.
Deep Survival : Who Lives, Who Dies and Why by Laurence Gonzales.
Psychologists who study survival say that people who are rule followers don't do as well as those who are of independent mind and spirit. When a patient is told he has 6 months to live, he has two choices: accept the news and die, or rebel and live. People who survive cancer in the face of such a diagnosis are notorious. The medical staff observes that they are 'bad patients',unruly, troublesome. They don't follow directions. They question everything. They're annoying. They're survivors.
Make yourself into a 'bad patient'.
Faster, better, stronger : 10 proven secrets to a healthier body in 12 weeks / Eric Heiden, Massimo Testa, and DeAnne Musolf.
One-Handed in a Two-Handed World (Second Edition) (Spiral-bound) by Tommye-K. Mayer
The luck factor : changing your luck, changing your life, the four essential principles / Dr. Richard Wiseman
The talent code : greatness isn't born. It's grown. Here's how / Daniel Coyle.
Talent is overrated Colvin, Geoffrey
Outliers: The Story of Success by Malcolm Gladwell
These three can be applied to stroke rehab, they essentially say that innate talent doesn't exist, it is all just focused practice, just like our massed practice therapy.
Rapt Attention and the Focused Life
Winifred Gallagher
Brunnstrom S. Movement therapy in hemiplegia:
a neurophysiological approach.
Bobath B. Adult hemiplegia: evaluation and
treatment,
Clinical Neuromythology and Other Arguments and Essays, Pertinent and Impertinent
Second Edition
By: William Landau
( this one I will never buy, I will not support him due to his misguided ideas on spasticity )
And here are the general brain knowledge ones:
The Three-Pound Enigma
Author: Shannon Moffett
A user's guide to the brain : perception, attention, and the four theaters of the brain
by Ratey, John J.
The secret life of the grown-up brain : the surprising talents of the middle-aged mind / Barbara Strauch This one was great because it supports the idea that middle-aged brains actually work pretty well.
Phantoms in the brain : probing the mysteries of the human mind / V.S. Ramachandran, and Sandra Blak
Evolve your brain : the science of changing your mind
by Dispenza, Joe
Rewire your brain : think your way to a better life
by Arden, John B.,
The Man Who Mistook His Wife for a Hat, Oliver Sacks
Ones I would like to read:
.
Being wrong : adventures in the margin of error / Kathryn Schulz
Peeling the Onion: Reversing the Ravages of Stroke
Striking Back at Stroke: A Doctor-Patient Journal
Stroke Rehabilitation - Guidelines for Exercise and Training to Optimize Motor Skill by Janet H. Carr and Roberta B. Shepherd
Acupuncture for Stroke Rehabilitation: Three Decades of Information from China
Rehabilitation of Paralysis Due to Apoplexy by Pan Chang
Clinical Science of Neurologic Rehabilitation
by Bruce H. Dobkin
Stroke Rehabilitation: Guidelines for Exercise and Training to Optimize Motor Skill Carr J, Shepherd R. Edinburgh: Butterworth-Heinemann; 2003, softcover, 301 pp. illus, ISBN: 0-7506-4712-4,
Textbook of Neural Repair and Rehabilitation
Acupuncture for Stroke Rehabilitation- Three Decades of Information from China by Hoy Ping Yee Chan
Upper Motor Neurone Syndrome and Spasticity, Clinical Management and Neurophysiology
Michael P. Barnes & Garth R. Johnson Eds
The Creating Brain
Author: Nancy C. Andreasen
A Brief History of the Mind
Author: William H. Calvin
7 Steps to a Healthy Brain
Author: Paul Winner
stroke measurement
Hi Does anyone know how a strokes severity is managed? This question came on a stroke forum and piqued my interest. After some research there is really nothing out there. For example 1-10 scale
one-size-fits-all
Cancer has stages and at least they tell you where the cancer is located.
I have heard of a couple of people who were told ccs of dead area but even they were not told where the dead area was. but alas I was told nothing.
from 1998
American Heart Association Classification of Stroke Outcome Task Force has worked to develop a valid and reliable global classification system that accurately summarizes the neurological impairments, disabilities, and handicaps that occur after stroke.
For stroke survivors to receive the best care, a comprehensive stroke outcome classification system is needed to direct appropriate therapeutic interventions
And these scales are based on deficits rather than the parts of the brain that were damaged. Here is the classfication system
I agree with the need but it is based on impairments rather than brain location and penumbra damage vs. dead brain so I think this is actually rather useless. I don't think this ever gained acceptence since no survivor has ever mentioned it.
Thursday, October 7, 2010
British Stroke Association
This was a request from them to their survivors asking for help. If only all the stroke associations around the world would do this we might get some results.
Here at the Stroke Association we are looking for a representative sample of people affected by stroke to take part in a reader panel to provide feedback and advice on our written information publications and help us to be really sure that they are meeting the needs of stroke survivors and their carers.
Reader panel members will be sent a range of publications by post or email to read at regular intervals throughout the year and will be asked to provide a range of feedback, via a method appropriate to your needs.
Whether you are a stroke survivor; a family member, a carer or friend of someone who's had a stroke; or you have an interest in stroke, if you think this role sounds interesting we want to hear from you!
To express your interest and request a role description and application form please send your name, address, email address and telephone number to us by emailing: info@stroke.org.uk
I wish I was British, I could provide excellent feedback.
So far I have only seen the British and Australian ones that seem to be survivor focused.
Here at the Stroke Association we are looking for a representative sample of people affected by stroke to take part in a reader panel to provide feedback and advice on our written information publications and help us to be really sure that they are meeting the needs of stroke survivors and their carers.
Reader panel members will be sent a range of publications by post or email to read at regular intervals throughout the year and will be asked to provide a range of feedback, via a method appropriate to your needs.
Whether you are a stroke survivor; a family member, a carer or friend of someone who's had a stroke; or you have an interest in stroke, if you think this role sounds interesting we want to hear from you!
To express your interest and request a role description and application form please send your name, address, email address and telephone number to us by emailing: info@stroke.org.uk
I wish I was British, I could provide excellent feedback.
So far I have only seen the British and Australian ones that seem to be survivor focused.
catch-22 of stroke rehab
No one is really addressing that most therapies including CIMT and Saebo require some minimal motor functionality in order to start using their therapy. To me there should be some defined path to get to that minimal movement. This is a wonderful catch-22, you don't have the movement to use our therapy and we don't know what to tell you to get to that minmal movement. This underscores my ideas on therapy for penumbra recovery should be different than therapy for dead brain recovery.
Oh well, beating my stroke addled head against a wall again.
cross country skiing and stroke rehab
When I first started cross-country skiing the trails were just the hiking trails in state parks. There were extremely narrow with sharp turns. You had to learn quickly or you would run into trees. I became quite proficient at skiing. After my event this was one of the things I wanted to accomplish. 9 months in with my wife and daughter assisting I 'skied' one block, my daughter would take my left arm with the pole attached and place it for each stride. That was the extent of skiing the first winter. The second winter I went along to a ski lodge in northern Minnesota. I skied maybe 3km on dead flat trails. The third winter I skied 10km and tried going up a 6 foot rise, I failed and fell, herringboning up hills is currently not possible. I ski with one pole in my right hand. Getting up with skis on is an interesting exercise in rolling in the snow until you get everything in the right position to push yourself upright. I skied a short while past the hill and turned around. Going down the hill I fell again because the groomed tracks disappeared halfway down the hill and I use those tracks to be able to keep my skis going in the right direction.
The fourth winter I just stayed on the flat trails and skied maybe 15 km. It looks like shuffling on skis but is still fun. This year I wasn't wearing my AFO which was probably a mistake because my ankle would roll to the outside of my left foot. It was darn lucky I didn't sprain my ankle. This coming winter I think I will go back to the AFO, still no arm swing so the left hand pole won't be used.
Don't think of this as medical advice.
The fourth winter I just stayed on the flat trails and skied maybe 15 km. It looks like shuffling on skis but is still fun. This year I wasn't wearing my AFO which was probably a mistake because my ankle would roll to the outside of my left foot. It was darn lucky I didn't sprain my ankle. This coming winter I think I will go back to the AFO, still no arm swing so the left hand pole won't be used.
Don't think of this as medical advice.
Wednesday, October 6, 2010
hospital vampires
Hospital vampires, beware of them, they do exist
I wrote this when I was still in the hospital. Practically every morning when I was in the hospital between 7 am. and 7:30 am one comes in the room saying I'm from the lab and need some blood work done. It seemed that every other day the vampire came for me. The one this morning was very polite, asking which arm I wanted to offer him. His prehensile fingers expertly put a tourniquet on the arm and cleaned the selected spot with an alcohol swab. He even thanked me for good gusher he selected. After he was done he thoughtfully put a cotton swab over the puncture and taped it down. I personally think this was more for hiding his victims from the other vampire residents than for his concern for me bloodying the sheets.
You can tell when the place is infested when the tourniquets are strewn around the room., They look like 1 inch wide flat rubber bands, blue. When I first got to my room there were two tourniquets draped over the bed rails and one on the door knob, I should have screamed bloody murder and requested another room but I was naive about the safety of hospitals.
No wonder I was exhausted all the time and could fall asleep in the 10 minutes
between therapy appointments. And there weren't any young women to distract him, just us middle-aged and old codgers.
Beware
I wrote this when I was still in the hospital. Practically every morning when I was in the hospital between 7 am. and 7:30 am one comes in the room saying I'm from the lab and need some blood work done. It seemed that every other day the vampire came for me. The one this morning was very polite, asking which arm I wanted to offer him. His prehensile fingers expertly put a tourniquet on the arm and cleaned the selected spot with an alcohol swab. He even thanked me for good gusher he selected. After he was done he thoughtfully put a cotton swab over the puncture and taped it down. I personally think this was more for hiding his victims from the other vampire residents than for his concern for me bloodying the sheets.
You can tell when the place is infested when the tourniquets are strewn around the room., They look like 1 inch wide flat rubber bands, blue. When I first got to my room there were two tourniquets draped over the bed rails and one on the door knob, I should have screamed bloody murder and requested another room but I was naive about the safety of hospitals.
No wonder I was exhausted all the time and could fall asleep in the 10 minutes
between therapy appointments. And there weren't any young women to distract him, just us middle-aged and old codgers.
Beware
demylination and stroke rehab
After nearly three years I finally decided to see another neurologist at a different clinic. It was quite interesting that there was no real interest in the MRI I brought along so I made the assumption that he was not interested in determining a diagnosis of my deficits.I was asking some difficult questions of him that he had no idea on. The first was whether I could go insane because neuroplasticity had taken over my cognitive functions in order to relocate my motor functions. He said it wasn't possible because the routing of nerves from the motor functions would no longer function because those nerves would have demylinated from lack of use. (What a load of bull - there are enough instances of recovery years later to disprove this.) I asked him if this was the same problem that MS patients have. I think he was just blowing smoke to try to bamboozle me with big words. He did suggest that maybe I wanted to try the RIC (Rehabilitation Institute of Chicago). That won't be occurring because Chicago is an 8 hour drive for me, so I will continue on the do-it-yourself plan. I have been unable to find any research that shows this to be the case.
And the questions I asked will be nothing compared to a high-powered Type A baby boomer.
And the questions I asked will be nothing compared to a high-powered Type A baby boomer.
Motor memory and stroke rehab
I have been reading books on the brain . The latest one was A User's Guide to the Brain by Ratey, John J. In it was a discussion on motor memory which led to my thinking that maybe it is possible to reverse engineer this so the memories of movements can be laid down as actual movement control in whatever new location is possible. I used to be a computer programmer, at times when we lost the programming source code we would take the load module and disassemble it back to actual coding statements. Similar to reverse engineering an iPhone to see how it works. Why couldn't we try the same thing with motor memories or whatever lost functions there are.
Talk about pie-in-the-sky ideas, I think too much about all things stroke related.
Talk about pie-in-the-sky ideas, I think too much about all things stroke related.
Tuesday, October 5, 2010
Alzheimers and stroke
The following is a series of comments on a stroke forum where survivors worry about getting alzheimers. In a class I took the instructor stated that 40% of Azheimers diagnosises were wrong, mainly because general practitioners don't have the knowledge or ability to correctly diagnose it.
And sometimes brains from other sisters who appeared mentally intact when alive show extensive evidence of the disease.Findings from Nun Study Show Contradictions of Alzheimer's Disease
I take this as hopeful so even if you have extensive Alzheimers you can still be mentally sharp. Which is quite a relief for me considering this article.
Research illuminates link between Alzheimer's and stroke
For years, neuroscientists have known that the risk of Alzheimer’s disease is nearly doubled among people who have had a stroke.
Research illuminates link between Alzheimer's and stroke
This particular article now speculates that what was normally considered to be a sign of Alzheimers -namely tangles and sticky plaques may actually be a sign of the fight against it. Which means to me that the nun study I quoted was probably not accurate New Science Sheds Light on the Cause of Alzheimer’s Disease
And AARP has better information than any of our stroke associations.
And then there is B vitamins - B vitamins may slow brain shrinkage
Although when I told this to a nurse, she said overdosing on B vitamins is not good.
I may have to figure out how to add to my brain reserve.The brain's reserve cells can be activated after stroke
You know the drill, don't listen to anything I have to say, ask your medical staff for information on this subject. If you are really lucky they won't say
'I know nuthin'
And sometimes brains from other sisters who appeared mentally intact when alive show extensive evidence of the disease.Findings from Nun Study Show Contradictions of Alzheimer's Disease
I take this as hopeful so even if you have extensive Alzheimers you can still be mentally sharp. Which is quite a relief for me considering this article.
Research illuminates link between Alzheimer's and stroke
For years, neuroscientists have known that the risk of Alzheimer’s disease is nearly doubled among people who have had a stroke.
Research illuminates link between Alzheimer's and stroke
This particular article now speculates that what was normally considered to be a sign of Alzheimers -namely tangles and sticky plaques may actually be a sign of the fight against it. Which means to me that the nun study I quoted was probably not accurate New Science Sheds Light on the Cause of Alzheimer’s Disease
And AARP has better information than any of our stroke associations.
And then there is B vitamins - B vitamins may slow brain shrinkage
Although when I told this to a nurse, she said overdosing on B vitamins is not good.
I may have to figure out how to add to my brain reserve.The brain's reserve cells can be activated after stroke
You know the drill, don't listen to anything I have to say, ask your medical staff for information on this subject. If you are really lucky they won't say
'I know nuthin'
Monday, October 4, 2010
dead brain recovery options
Since I have huge amounts of dead brain these are the therapies I am using to try to get them moved to another location. This is not actually recovering the dead brain, it is trying to move the functions that area of brain controlled to another place. This is probably the hardest thing to do, especially with no research guidance or medical support on how to do this. So this is just my opinion only, try your doctors to see if they have anything better and then reply here.
mental imagery:
Andrea Zimmermann-Schlatter*1,2, Corina Schuster2,3, Milo A Puhan4,
Ewa Siekierka5 and Johann Steurer4
http://www.jneuroengrehab.com/content/pdf/1743-0003-5-8.pdf
Using Motor Imagery in the Rehabilitation of Hemiparesis ,
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
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
Passive movement: http://www.ncbi.nlm.nih.gov/pubmed/15003755
The effects of repetitive proprioceptive stimulation on corticomotor representation in intact and hemiplegic individuals.
Thermal therapy: http://stroke.ahajournals.org/cgi/content/full/strokeaha;36/12/2665
researchers found that cycles of heat and cold significantly enhanced the
sensory and motor function in the arms and hands of stroke survivors after a few weeks of therapy.
Music therapy: I am way too late for this to help but this should be part of every survivors' therapy in the hospital.
http://www.msnbc.msn.com/id/35502970/ns/technology_and_science-science/
http://www.epsychology.us/rhythm-of-life-music-shows-potential-in-stroke-rehabilitation/
https://web.archive.org/web/20090726073749/http://hubpages.com/hub/Music-Therapy-Healing including Kenny Rogers
I don't think I could have handled Kenny in the hospital.
Lucid dreaming: This one is just my completely off-the-wall idea. Why waste the time spent sleeping. Of course I have no proof/research that supports this. I try to dream using my pre-stroke abilities.
Do not take any of this as medical advice
mental imagery:
Andrea Zimmermann-Schlatter*1,2, Corina Schuster2,3, Milo A Puhan4,
Ewa Siekierka5 and Johann Steurer4
http://www.jneuroengrehab.com/content/pdf/1743-0003-5-8.pdf
Using Motor Imagery in the Rehabilitation of Hemiparesis ,
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
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
Passive movement: http://www.ncbi.nlm.nih.gov/pubmed/15003755
The effects of repetitive proprioceptive stimulation on corticomotor representation in intact and hemiplegic individuals.
Thermal therapy: http://stroke.ahajournals.org/cgi/content/full/strokeaha;36/12/2665
researchers found that cycles of heat and cold significantly enhanced the
sensory and motor function in the arms and hands of stroke survivors after a few weeks of therapy.
Music therapy: I am way too late for this to help but this should be part of every survivors' therapy in the hospital.
http://www.msnbc.msn.com/id/35502970/ns/technology_and_science-science/
http://www.epsychology.us/rhythm-of-life-music-shows-potential-in-stroke-rehabilitation/
https://web.archive.org/web/20090726073749/http://hubpages.com/hub/Music-Therapy-Healing including Kenny Rogers
I don't think I could have handled Kenny in the hospital.
Lucid dreaming: This one is just my completely off-the-wall idea. Why waste the time spent sleeping. Of course I have no proof/research that supports this. I try to dream using my pre-stroke abilities.
Do not take any of this as medical advice
Penumbra identification and recovery for stroke rehab
This study on the penumbra kind of reflects on what I consider to be necessary.
http://onlinelibrary.wiley.com/doi/10.1111/j.1747-4949.2010.00444.x/full
Mainly that the penumbra be identified so therapies can be directed for that damage
as compared to dead brain damage which should have completely different therapies.
Reading this is obviously not for laypersons, it may as well be written in Sanskrit.
I did ask the question on PhysioBob if the therapists there had different protocols for penumbra recovery vs. dead brain recovery, but no one answered. I hope that was just because they don't answer survivors rather than they didn't understand the question.
At least it does prove that PET scans can visualize the penumbra.
http://onlinelibrary.wiley.com/doi/10.1111/j.1747-4949.2010.00444.x/full
Mainly that the penumbra be identified so therapies can be directed for that damage
as compared to dead brain damage which should have completely different therapies.
Reading this is obviously not for laypersons, it may as well be written in Sanskrit.
I did ask the question on PhysioBob if the therapists there had different protocols for penumbra recovery vs. dead brain recovery, but no one answered. I hope that was just because they don't answer survivors rather than they didn't understand the question.
At least it does prove that PET scans can visualize the penumbra.
Saturday, October 2, 2010
Cane exercise for stroke rehab
Found a couple of exercises to use with my cane.
For flexability in the shoulder and ROM(range of motion) I started by using the pulley over the door, but that was only available in one place and it was extremely hard to get my hand open enough to grab the handle. So I tried something different, Putting the grip handle of my cane in my affected hand, I grabbed the lower part of the cane with the unaffected
hand and used that to push my affected arm up. First straight in front of me , then to the side and eventually to the rear. I would try to get my affected hand to the level of my head, After a while I could get it well above my head. Next step was to move the arm around in a semicircle around my body as it was up in the air. I first had to use the unaffected arm to push the affected arm around but was able to get the affected arm moving by itself. A recent addition is to put the grip of the cane in my affected hand and push the left arm straight out to the side and then place the tip of the cane on my hip. I then try to move my arm behind my back, this stretches my spastic pecs out and forces my biceps to quiet down.I know this has helped both my arm swing and relaxing my biceps. This de-weighting of the arm has led to other similar advances.
For working on my triceps I used my cane also. First sit down on a chair and place your cane in front of you, affected hand on the grip, tip on the ground, starting out you can use your unaffected hand to fully extend your affected arm. As you get better at this you will be able to use your affected arm only to extend your arm and then pull it back. I started out by doing 50 reps of these nightly, ended up doing them also when waiting at a bus stop bench, or when sitting in a waiting room. For working on your shoulder muscles when your arm is extended straight in front of you,move your arm to the right and left, seeing how far down you can go. This I use to mimic moving the steering wheel on a car.
By using the cane in these manners I am carrying around my exercise equipment all day long.
Remember you didn't hear this from me, ask your therapist first
Neuroaid and stroke rehab
I was answering a question on the MedHelp forum that was posted by a Neuroaid representative. My answers were as follows.
This was an interesting blog posting on the ancient chinese medicine.
http://skeptigirl.wordpress.com/2009/02/12/cam-taking-advantage-of-stroke-patients/
It confirms my thoughts on magical stroke recovery.
Here is a clinical trial but I couldn't read it.
http://www.clinicalconnection.com/exp/ExpandedPatientViewStudy189961.aspx
They replied back listing this research as proof.
http://content.karger.com/produktedb/produkte.asp?typ=fulltext&file=000155220
I read this and pointed out that this sentence in the report showed that there was no scientific benefit.
The impact of Neuroaid treatment cannot be differentiated
from the contribution of natural recovery, medication and physiotherapy effects. However, all cases reported
improvements.
And the next day I went back and the complete posting was gone. I think I haven't been banned from the site yet due to stepping on toes. Oh well, I may have to use another alias, Zorro here I come.
This was an interesting blog posting on the ancient chinese medicine.
http://skeptigirl.wordpress.com/2009/02/12/cam-taking-advantage-of-stroke-patients/
It confirms my thoughts on magical stroke recovery.
Here is a clinical trial but I couldn't read it.
http://www.clinicalconnection.com/exp/ExpandedPatientViewStudy189961.aspx
They replied back listing this research as proof.
http://content.karger.com/produktedb/produkte.asp?typ=fulltext&file=000155220
I read this and pointed out that this sentence in the report showed that there was no scientific benefit.
The impact of Neuroaid treatment cannot be differentiated
from the contribution of natural recovery, medication and physiotherapy effects. However, all cases reported
improvements.
And the next day I went back and the complete posting was gone. I think I haven't been banned from the site yet due to stepping on toes. Oh well, I may have to use another alias, Zorro here I come.
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