My abbreviated Background story 2

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

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

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

Compensation vs. recovery stroke rehab

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

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

The fall

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

Book reading list for stroke rehab

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

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

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

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

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

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

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


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


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




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

stroke measurement

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

British Stroke Association

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

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

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

catch-22 of stroke rehab

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

cross country skiing and stroke rehab

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

hospital vampires

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

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.

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.

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'

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

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.

Cane exercise for stroke rehab

This is not medical advice, just something I do.
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.

24 hour-a-day stroke rehab therapy

My therapy seems to continue 24 hours a day.  There is nothing here that is clinically proven but I believe that even minimal tries every day will eventually produce neuroplastic change.
This knowledge came from reading lots of books, mostly Stronger After Stroke by Peter Levine. Everything I do has to be looked at in terms if it will help my recovery. I'm left side affected with at least half of my motor cortex dead and all of my pre-motor cortex dead, no real damage to my sensory cortex. This diagnosis did not come from my doctor since he never even showed me my MRI, I figured this out myself by joining a research study that did an fMRI scan on my brain. My sensory cortex supposedly was not affected but is less than before so I am assuming that it was routed thru the motor cortex across the central sulcus to get to the correct nerve endings. And since the motor cortex is mostly dead I have to find a new pathway to those nerves. This is rather depressing that I have to do all this self-diagnosis myself.
Since I am 4 years out I am way past the normal spontaneous recovery of the penumbra of the stroke. This means that all the work I am doing is to neuroplastically move control of dead areas to another location in the brain. The concept I am working on is to at least get some movement by passively moving body parts that don't work. Passive movement does have some research backing it up. http://www.ncbi.nlm.nih.gov/pubmed/15003755

Normal day, going to work.
Breakfast is pretty much a one-handed affair. I don't have finger extension yet to be able to hold my bowl of cereal with my left hand.  I can't keep my arm on the table due to spasticity constantly pulling it off, My OT tried to use opening the refrigerator door with my left hand as a therapy goal but since the fingers still haven't opened that one is still a failure. Zipping up a coat is still a challenge with the limited pinch grasp I have. I walk 2 blocks to the bus stop with my cane. I use a cane to get to work because the Messenger bag I carry pulls me off balance. At the corner waiting for the bus I lift my left foot up to the top of an 18 inch high rock. this mimics the stair stepping my PT always had me doing.After that I stand on my right leg and pull my left leg back until it rests on my left toes, this is trying to get my hamstring to fire. Then comes standing on my left leg and stepping back and forth with the right leg, good for all the little muscles that fire in your legs to keep you balanced, if necessary I use the cane in my right hand for balance. This came from a Tai Chi class I took. I add using my cane for PROM movements of my shoulder. On the bus ride itself I have to decide if I should work on keeping my arm straight, trying to stop the spasticity in my bicep, or flex my fingers open and closed with my good hand.
At work, I use my good hand to guide me bad hand with a single finger pointing down to type. Sitting in my work chair I pull my left leg under me, trying to fire my hamstring muscles.I try to dangle my arm over the side of the chair to let it know that it can relax and hang straight. Washing my hands at the sink I have to open and close the single lever faucet with my bad arm/hand. Then I go to the stairwell and do a set of 50 toe raises.
Waiting at the bus stop at night I raise and lower my lower arm 50 times. Next is knee bends on the left side, just going down enough to unlock the knee and then straightening it out again. On the way home I stop at one of our apple trees in our yard and put the affected hand around a limb that is at shoulder height, push and pull with the biceps/triceps. Sitting on a couch reading requires either sitting on my flattened hand or keeping the whole arm straight next to my leg.
While sitting I rotate my arm outward from my leg, even if it is only 3 inches at a time.
Eating at the table I just put my left hand flat on the table next to my plate, just trying to keep it in one place is a workout quieting down my spastic pectoralis and bicep muscles. I sneezed once at the table and swept all my dishes to the floor, so now I grab my affected hand as soon I notice a sneeze coming. In the shower at night I put my affected hand directly under the shower head trying to stimulate the sensations. This idea came from Sensory Re-education of the Hand After Stroke by Yekeutiel, Margaret. I also have a small fingernail brush that I use on my affected hand. The other trial I work on is hot and cold water on the hand from http://myweb.ncku.edu.tw/~fzshaw/ ASA.pdf
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.
At night I have to decide if I want to sleep on my back which requires putting my affected fist under my butt, or sleep on my side with my affected hand flattened out under my pillow.
Other therapies during a regular day. Riding in a car means either flexing my fingers of my affected hand or straightening my left arm and just holding it straight.
Every time I stop walking I have to consciously tell my left arm to relax and hang straight by my side. This is rather embarassing for a guy walking around to have his bent arm constantly banging into his crotch. As much as possible I try to come up with exercises that engage my triceps to keep my arm straight. I also work on exercising my biceps because exercising spastic muscles does not increase spasticity as your therapist probably told you.
None of this is intended to be medical advice, Just my opinion that if you are going to recover you need to consider it a constant job, either with exercises or mental imagery of those exercises.
My suggestion is that you take whatever movement you do have and work at the outer limits of that movement.
What I have to do is think every single moment of the day if there is some movement I should practise or should I be thinking about that movement. What this means is that I have to do everything the hard way to get to recovery rather than compensatory movements.
This book, The survivors club : the secrets and science that could save your life / Ben Sherwood, was interesting in that it broke down survivors of disasters into 3 groups. 10% would actively become leaders, 80% would follow the leaders, 10% would do nothing. I try to apply this to my stroke survivorship and am working on being in the top 10%.
In further posts I will detail the work I do for rehab.

No rest for the wicked.

21 days of canoeing therapy

In 2009 this was my 'vacation'.A 21 day canoe trip on the Eagle, Bell and Porcupine rivers in the Yukon and Alaska with Wilderness Inquiry. I wouldn't call it a vacation because we paddled every day and I was quite fatigued every day. I ended up being the only disabled person on the trip. Some learnings taken from the trip:
1. The 3-legged folding camp stool was an absolute necessity, Crazy creek chairs are not feasible yet because of the problem of getting up off the ground. This way I could have a lap to set the food bowls and actually eat since my left hand is not usable yet for holding a bowl or plate without spilling.
2. I left my AFO(Ankle Foot Orthotic) packed away for the whole trip. After 10 days I could tell that I was getting a heel strike with my left foot, which the AFO prevents me from doing. Walking over extremely rough ground strengthened my ankle muscles but I could tell I was close to the edge of getting an ankle sprain which really slowed down my walking.
3.By the time the end of the trip came I was able to lift my left foot over the gunwale of the canoe without having someone else lift it out for me.
4. kneeling while in tent. This was pretty much a no-no for any of the rockier sites because I still only have a three-point stance, The left arm and hand still collapse too easily.
5. Moving around in the tent. It was a good thing we had 4-person tents, as I was getting ready for bed I would take up 2/3rds to 3/4ths of the tent as I flailed around getting the sleeping pad and bag ready.
6.Sleeping bag. I have a right hand zipper which you would think would be good since my right arm /hand is still quire useable. Good thing it only got cold on two of the nights. I was able this year to get the sleeping bag zipped all the way up but not able to cinch the drawstring. So I draped my pile jacket over my shoulders. The second night I knew it was going to be cold so I just wore the jacket to bed.
7.Kneeling to paddle in boat. Because these were Pak-Boats they had aluminum tube frames that made it difficult to get my feet into the correct position. In two hours my knees and ankles would be dying. A lot of this was because I couldn't adjust my position after I got in because I couldn't get my left arm/hand down on the gunwale to push myself into a slightly different position.
8. Paddling on the left side. The first day I used the velcro hand wrap to attach my left hand to the paddle shaft. This only worked somewhat well. This was because the lower hand on the paddle shaft slides along it until the paddle is planted in the water. The rest of the trip I didn't use the velcro thing. I could manage about 5-6 paddle strokes before I had to put the paddle shaft on the gunwale and pull the shaft out so the hand was lower down on the shaft. I probably only paddled on the left side maybe 10% of the time due to this problem. Paddling on this side required a lot of concentration and looking at the hand to make sure it was still positioned correcly. Which didn't allow me to look at the scenery.
9. Paddling on the right side. I never tried velcroing my left hand to the t-grip because I observed how my right hand worked by clasping and upclasping the grip on every stroke. I ended up prying my hand open enough to force the T-grip in and curled the thumb around the end. I could paddle anywhere from 3-70 strokes before having to reposition the hand again. The paddle stroke still left a lot to be desired, I was never able to get the full extension on the left arm to get a vertical shaft but it was better than last year where the left hand didn't get off the chest. This year it was at least 10-12 inches out from the chest. Paddling on this side was much better, mainly because I could do it without full concentration, allowing me to see the scenery and talk to other paddlers.
10. Some of our participants calculated that we would need to do around 500,000 canoe strokes. We did around 600 miles, averaging about 30 miles per day in 7-8 hours.
11.finger intrinsics
First some definitions. Intrinsic muscles are those completely contained within the hand/wrist unit. The extrinsic muscles are contained in the forearm and connected to the hand by tendons and provide
most of the power and range of motion of the joints of the hand.
Intrinsics stabilize the hand in fine motor tasks.
I have been working a lot on passively flexing and unflexing my fingers which are the extrinsic muscles, flexors and extensors but have not been working on the intrinsics mainly because I think I need to get the extrinsics working first and I don't know how to start engaging them.
On my canoe trip on the day I ripped the skin off my left palm we were paddling downstream with an upstream wind of 20-30 mph and I was paddling as best as I could on the right side with my left hand gripping the t-grip. My extension of my left arm was pretty poor, only able to get it out maybe 10-12 inches from my chest. We beat against the wind for a couple of hours until we were all forced ashore. After some consultations it was decided to set up camp, sleep and start paddling again in the evening when the wind usually dies down. So we slept from 5-10 pm and started again at midnight paddling until 3 am(24 hour daylight is wonderful at this latitude) I didn't sleep too well because the left hand was aching a lot. I think what occurred is that I totally overworked my finger flexors and the intrinsic muscles in the hand started firing to try to help hold the paddle. This was a wonderful occurence to find out about since it may lead me to a way to get the intrinsics firing again.
12. Tiredness or being knackered as our English friends say. During the rest stops/lunch breaks I could easily fall asleep. This is somewhat of a conundrum since according to my latest physical I have a resting heart rate of 53, which at my age of 53 puts me in the athlete category. If I am an athlete, why am I so tired all the time?
13. Setting up tents was a problem because the tents had sleeves for the poles, not conducive to one-handed help.
On the river we saw black bears, fox, moose, bald eagles, sandhill cranes.
We paddled past the 25,000 acre Porcupine River forest fire, saw some complete trees go up in flames.

Analysis to riding a two-wheeled bike

This is one of my goals. In order to accomplish this there are numerous items to work on. I have to do a lot of analysis to determine what individual pieces I need to work on. This is completely different than how I started on a trike, I just got on and started pedalling.
My balance is pretty good, I can ride my tricycle for hours with no problems, I can stand on a bosu ball for 15 minutes at a time.
1. The up and down motion of the left leg is in a straight plane on my trike, much better than when I first started riding when the knee would swing out quite a bit.
2. Getting the left foot flat when pedaling. Spasticity in my leg causes my toe to point downward when pedalling. The toe occasionally scapes the ground. So far it has not caught anything, but this needs to be corrected prior to the two wheel test. I use the pool at the 'Y' for some of this. standing on the lowest step with my right foot on it. I put my left leg/foot go thru a pedalling motion, also useful for mimicing the walking motion. At the 'Y' I also use the exercise bikes because it is much easier to concentrate on good pedalling form when you do not have to balance the bike. The toe clip is essential to keeping my foot on the pedal.
3. Getting the left foot onto the pedal. This is only possible right now on my trike when I am completely stopped. My hamstring doesn't have enough power to counteract the spasticity extension of the lower leg. Some exercise to counter this; Stand in the pool and lift the left leg to the surface facing the wall so the foot can't swing out. Lying on a mat face down and lifting my left foot up so it forms a 90 degree angle to my body. Sitting in my chair at work and pulling my left leg underneath me.
4.Signalling turns with my left arm. I am passing on this because I know I do not have enough brainpower to tackle this. Also I will only be starting out on paved dedicated bike trails.
5. holding the left arm straight to be able to put weight thru the arm to the handlebars. I do have a city bike so my riding posture is fairly upright but I used to ride with the dropped handlebars all the time and was very comfortable doing that.
I can't use the flat hands and straight arm against the wall because I can't get anywhere close to a flat hand. So I use a shoulder height branch from our apple tree to lean into and push away from.
6. grasping and releasing the left hand from the handlebars. On my trike this is not really a problem. Once I get it clamped on it will stay there. But for a bike I will need to be able to release it. Or I might have to ride the bike into the ground if I fall or try to stop suddenly. I extensively work on passively flexxing/unflexing those fingers. But I plan on wearing my SaeboFlex, it will at least allow me to let go of the handlebars. I will look stupid but that comes with the territory.
7. braking with the left hand. I don't plan on using this because I will be on a flat dedicated bike path. Maybe if I am lucky the Saebo will allow my hand to open enough to reach the brake lever.
8. Getting my left hand onto the handlebar. This will probably have to be done while stopped. I barely can control my whole arm while standing still.
Left foot toe clips. I have this on my trike and will have to install one on my bike. Without this I doubt I could keep my foot on the pedal for any length of time.
This ought to be interesting since the first time I rode a three-wheeler I crashed on a perfectly straight/level path. Obviously this will be a goal for next summer, I can work on the pieces this winter.
This pretty much is not how therapists are taught to work with stroke survivors, they are taught to work on complete functional movements. But since I am nowhere close to the movement needed I decided that the only way to recover was to break down the movements into doable small pieces and then eventually put them together. Since this is not one of the ADLs I shouldn't even attempt this.

You know the routine, Do not take any of this as medical advice.
2 updates, read these before trying this.
http://oc1dean.blogspot.com/2011/07/testing-bicycle-riding.html

http://oc1dean.blogspot.com/2011/08/epic-failure-at-bike-stroke-therapy.html