Deans' stroke musings

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

What this blog is for:

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

Thursday, September 30, 2010

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.
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 Linkdirectly 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 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.

Wednesday, September 29, 2010

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.

Tuesday, September 28, 2010

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.

Monday, September 27, 2010

Failing at the corpse pose in yoga

The corpse pose, or Savasana in Sanskrit, is the most restful pose in yoga. It's the final pose used in most yoga classes, but can also be done on its own to facilitate meditation or relaxation. You lie on your back, legs slightly spread, arms slightly spread out.
This is supposed to be the easiest pose in all of yoga and I can't do it because my bicep and pectoral muscles are spastically contracting and pulling my arm up onto my lap. This also means that when I try to sleep on my back I have to tuck my hand under my butt to try to get the whole arm to relax. I tried an air splint but by morning I had always bent my arm forcing the air out.

Friday, September 24, 2010

3 reasons I survived

I think there were 3 reasons I survived my event.
1. I was in fantastic physical shape. I had just completed a 6 day whitewater canoeing trip in Canada, 23 miles falling 1100 feet, only 5 portages. One of those being 1.5 miles long. On the Dog River Ontario by Wawa. Here are some pictures, I am in the red canoe, red helmet. Dog River album
This is Denison Falls 120 ft. 1.5 mile portage A favorite place to paint by Bill Mason

2. My brain reserve was pretty substantial.

3. I received the clot busting drug tPA within 1 hour. Even so the dead area was substantial. I was listed in critical condition the first day. 3 years later my parents finally told me that when they left the hospital that first night they were positive that I wouldn't survive the night. Of course I had no idea I was that bad. And my doctors never told me anything. My cascade of neuronal death had to be substantial.

Left hand stroke therapy

Getting something into my left hand is an interesting exercise in patience. While my hand is not curled into a fist the fingers are not hanging loose. Anything larger than a bottle of soda is impossible to grasp. The top also needs to be sealed, an unopened can or bottle is only possible because I need to be able to tilt it on its side prior to forcing my fingers open. Open glasses will not work because I can't hold it upright and pry my left hand fingers open at the same time. Soft sided styrofoam or cardboard cups are also out. My basic therapy for this is passively flexing my fingers open and closed with my right hand. I used to have a plastic hand splint for nighttime use to keep my fingers straight and splayed but after three years of continous use the plastic rotted.

obstacles to my stroke recovery - spasticity

Sometimes this is called tone, which sounds so benign.
I consider spasticity the largest reason I am having a hard time recovering. My bicep is firing most of the time so instead of my arm hanging straight by my side it is slightly bent. This causes my hand to bang into my crotch when I walk. Sometimes known as the 'dead brain look' Freehand reaching for something is almost impossible because my biceps tenses up preventing me from reaching forward. I'm not sure I have enough brain power to handle two things at once. Telling one set of muscles to relax while telling the opposing pair to extend. If I didn't have to control spasticity first I know I would be able to neuroplastcally move the actual movement to another location in my brain. I am not paralyzed enough to easily recover. If you really want to get irritated google William M. Landau and see what he thinks about the usefulness of spasticity.

Stroke rehab for sensory input

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. I take a fingernail brush and run it across my left hand. In the shower I hold my left hand under the shower spray. I haven't yet gotten to the thermal stimulation yet, that is dunking your hand in ice water alternating with warm/hot water.

A hot/cold session consisted of two alternating cycles performed five days a week for six weeks. The sessions lasted between 20 minutes and 30 minutes. Thermal packs were wrapped in towels, and applied to the patient's hand and wrist. The hot pack was 167 degrees Fahrenheit, while the cold pack was just below 32 degrees Fahrenheit.

A lot of these ideas came from Sensory re-education of the hand after stroke by Yekeutiel, Margaret.

Thursday, September 23, 2010

Stroke rehab and life in the slow lane

This falls into one of our requirements in order to recover. I think this was best put in one of the survivor books I read. The survivor was spending 5+ minutes trying to turn off a light switch when her husband walked by and thinking he was helping turned it off for her. She was not happy as it was one of her rehabilitation goals. I try to use the same idea when using the lever faucets at work, I could get it done in 1 second with my right hand but it takes 5-15 seconds with my left hand/arm. I think I will be in the slow lane for years to come.  
It also means having to accept that I walk slower without my AFO and cane, but you have to take these small steps to get better.

Wednesday, September 22, 2010

stroke rehabilitation and drop foot

This is an extremely common result of a stroke. The patient can't lift their foot
during walking to clear the ground. The problem is that dorsiflexion is not occurring. The standard response seems to be get them a AFO to lock the foot at 90 degrees. I didn't see any attempt to determine why the dorsiflexion was not occurring.
I can see numerous different reasons and I am not medically trained.
1. The motor cortex area that controlled the Tibialis anterior muscle was damaged and in the penumbra.
2. The motor cortex area that controlled the Tibialis anterior muscle is dead.
3. The pre-motor cortex was in the penumbra.
4. The pre-motor cortex is dead.
5. The executive control was in the penumbra.
6. The executive control area is dead.
I don't know my math very well but I think this leads to 6! 6 factoral or 6* 5* 4 * 3 * 2 * 1 = 720 possible variations as to the cause of dropfoot.
Correction: I asked a PhD friend about this and his reply was;

On your combinatorics question - the 6! = 720 combinations would refer to a situation in which all six items are distinct from each other and for which the order matters. I don't believe that is the case here. It seems to me that you are describing three possible areas for controlling dorsiflexion (motor cortex, pre-motor cortex and executive control) that are always there, and the failure of dorsiflexion happens if at least one of these areas is damaged/dead. So if I call those areas M, P and E and if they are either alright (Y) or damaged (N), then normal control happens for one configuration only:



In the second row, there are seven other combinations:




In other words, three areas with are either Y/N leads to 2^3 = 8 total combinations, of which only one is all Y, and the other 7 refer to a dysfunction. Then I would say there are 7 different variations as to the cause of dropfoot.

And we have a one-size-fits-all AFO for this.
The standard seems to be a rigid plastic AFO, sometimes with a built-in hinge.
I received one of these for two reasons, allowing my toes to clear the floor and stop the eversion of my foot.
Currently have quit using the AFO from 1 year ago. The use of it was preventing me from getting a decent heel strike and was not allowing me to build up any muscle strength in my ankle muscles.
I think that there should be a protocol for each underlying diagnosis. In my case I can dosiflex in any position but doing it while walking does not work very well. My diagnosis is that since my pre-motor cortex is dead it was not coordinating the firing of all the muscles of walking. Do not take any of this as medical advice.
Peter Levine has a good description of what you are missing by using an AFO to compensate.

Tuesday, September 21, 2010

Stroke research questions

I started compiling a simple list of questions that I think stroke researchers need to address regarding stroke rehabilitation. I consider them to be easy questions with difficult answers. Without these answers we are just stumbling in the dark.

1. What is the correlation between cognitive ability before the stroke and complete recovery from the stroke deficits?
2. What amount of cognitive ability is needed after the stroke to get to complete recovery?
3. Can neurons in the brain control two different processes at the same time? ie. Can the area for toe control also be used for finger control?
4. If the previous question is false then how is it decided which functions of the brain are thrown out to neuroplastically recover damaged functions? This assumes that 100% of the brain is in use and the 10% use of the brain is a myth.
5. How many persons go insane while recovering from a stroke? This is a serious question.
6. How does brain reserve get built up again?
7. Why has no one folowed up on Brunstroms six stages of recovery to map exactly what needs to be done to get from stage to stage?
8. How much sensation is needed to fully recover motor ability?
10. What needs to be done to bring back proprioception?
11. Which therapy is best for getting a new area to start performing functions from a dead area? Passive movement, mirror-box therapy, or mental imagery?
12. How many passive movements are required to start neuroplasticity?
13. Does the laying down of new functions facilitate related functions nearby? If shoulder muscle control relocates, does that make it easier for arm and hand control to relocate nearby?
14. What is the order that recovery should work on? Should complete leg work be done before working on arm/hand issues? Or can therapy be interspersed?
15. Has the spasticity issue finally been resolved? Should spasticity be treated? From 2004-5 there were a number of researchers stating we should not treat spasticity, it was a normal protection effect of the stroke.
16. Do new neurons grow into the dead area? Where does neurogenesis lay down the new neurons?
17. Would cell homing be useful as a pointer for stem cells?
18. Which technolgy has been proven to be better, c3A peptides or NOGO receptors?
19. In 20 years when the boomers are fully into having strokes, what will you tell them about complete recovery from a stroke? They will not accept 'I don't know' for an answer.
20. How many years after a stroke is the tumor necrosis factor (TNF) is still around in the brain? In regards to the use of etanercept.
21. Is anyone researching white matter recovery vs. gray matter?

I eventually will keep going on these questions. As a lark I once said I could come up with 1000, with a little help that wouldn't be hard. Someday I will figure out how to get these to NINDS.

Monday, September 20, 2010

Negative reinforcement as stroke rehabilitation

Negative Reinforcement - Does it Work?
In 2008 I took a week long canoe trip to the BWCA with Wilderness Inquiry trying to get in thousands of canoe strokes to recover that part. Since we moved everyday we had to go over 6-8 portages each day. I was not wearing my AFO because I kneel when I canoe so I was going over the rough portages with no brace on(which my PT scolded me about later) Because I was not able to clear the foot completely my foot would bang into rocks and tree roots hundreds of times each day. This turned out to be extremely painful since I had an ingrown big toenail on my affected foot.
My learning on this was that negative reinforcement was not enough to learn to lift my foot properly.
I also remember talking to and slapping my hand to get it to work, but that didn't work either. I guess the brain in my hand muscles does not understand English.
Don't try this at home.

Stroke rehabilitation of curled toes

My experience with curled toes.

I had curled toes starting about 6 months in. This is a problem because your first AFO is probably made in the first 2 months, Thus when your toes start going spastic you can't get one made with a toe crest and metatarsal bump because the first one is not past its life span(3 years in my case, I switched HMOs so I was able to get a better one after the first of that year. You'll have to scream bloody hell to get your insurance to pay for a new one.) It made it rather difficult and painful to walk. My PT could only recommend stretching exercises. My OT suggested a new AFO with a built-in toe crest and metatarsal pad. I did try botox on the toe flexors but that didn't work. When I went to my doctor at the 9 month mark all he could suggest was snipping the tendons that controlled my toes. I didn't follow up with that but did manage to get a new AFO with builtins. At the 3 year mark I was in a research project and saw my fMRI scan. It showed that the part of the brain that controlled toe function was still alive. It was rather distressing to realize that I could have permanently lost toe flexion due to surgery because no one correlated the MRI scan to dead brain area. I was soon able to actually flex and extend my toes. I think what occurred is that signals from the toe area were routed thru the underlying white matter dead brain area and took 3 years to accomplish that rerouting, and that was with no trying to move them on my part. Wiggling my toes was the test that the doctors used in the ER to determine that I had a stroke and to test that the tPA did not work completely.
When I finally got to a computer and starting looking up curled toes I found that it was quite common and no one seemed to know what to do about it. This was my first inkling that stroke rehabilitation had no common protocols or understanding about how to treat common deficits. Every other disease has treatments for specific diagnoses. As one therapist put it, 'There is no cookie-cutter approach to stroke rehab'. I don't believe that comment.
Evidence-based rehab has yet to get to stroke rehabilitation.

Friday, September 17, 2010

Letter to the International Journal of Stroke

I submitted an article to the International Journal of Stroke, it was rejected, I'm sure because I am not a researcher or doctor and thus have no standing to try to influence the way stroke rehabilitation is provided.
The title was, What the future of stroke rehab looks like. Currently trying to rewrite it and send it as an opinion piece to either the New York Times or Washington Post.

Its my way of tilting at windmills, the gusts of wind are pretty strong. I'm also pretty stupid as a result of my stroke and will probably keep bashing my head against the wall because it feels so good when I stop.

Tuesday, September 14, 2010

letter to the president

After hearing that President Obama reads 10 personal letters a day I sent a letter to him recounting my efforts at stroke rehabilitation. I think he actually read my letter, I recieved a form letter in return thanking me for writing.
The rest of the letter is just an explanation of what stroke recovery looks like to my eyes and it is not a good experience.
This was one of the points I made.
Start a 10-20 year longitudinal research project to get fact-based information on what works as survivors complete their recovery.  What is really needed is a massive research program following the millions of survivors and documenting what works for recovery. Only by finding the facts can we actually have a decent discussion on what works and provide survivors with a palette of options to help them recover. This is what I think NINDS(National Institute of Neurological Disorders and Stroke) should focus on. There seems to be no way for survivors to find out what is occurring in NINDS probably because we are seen as old people with impaired intelligence.
If you want to write here is the address:
The White House
1600 Pennsylvania Avenue NW
Washington, DC 20500

Monday, September 13, 2010

stroke rehab with a recreational sea kayak

I have my own 17 foot fiberglass Eddyline Raven sea kayak but currently it is impossible to get it down from my garage, loaded onto my car and then launched into a lake. I rented a sit-on-top recreational kayak from a local park district. Completely different from a regular sea kayak. Good thing I could try one out because they are not worth buying. You are 4-6 inches above the water rather than having your butt below the waterline. This makes for an extremely tippy ride. I had to be constantly engaged in staying upright. This was approx. a 12 foot boat so it had no rudder and since my paddling it not close to even I ended up going in a large circle to the right. I think I paddled for about 20 minutes, by then fighting my spastic muscles had exhausted my left arm. I know this is supposed to be mainly torso rotation but just holding my arms up was enough to tire me out.

Stroke quotes

Sargeant Schultz ' I know nuthin' from Hogan's heroes. This seems to be a popular response from our doctors.

Hippocrates from approx. 400 BC 'It is impossible to cure a severe attack of apoplexy and difficult to cure a mild one’ Back then stroke was called apoplexy. So in 2400 years we have barely moved in terms of stroke rehabilitation knowledge. If we get survivors in positions of power we won't take 2400 years to get something accomplished.

Einstein 'Insanity: doing the same thing over and over again and expecting different results.' Does this imply that all stroke survivors that believe in using neuroplasticity are insane for that belief? Or should we just ignore Einstein because we are smarter than him?

I have not failed. I've just found 10,000 ways that won't work.

Thomas A. Edison

This goes with along with the Einstein quote, although I think that I will probably find millions of ways that won't work before I get neuroplasticity to work for some of my deficits.

Breakfast saying for bacon and eggs - the chicken is involved but the pig is committed. The medical staff is involved but the survivor is comitted.
So if you want something done give it to a survivor.

'All strokes are different and all stroke recoveries are different'. The second part can be proven wrong by a longitudinal research study following survivors for 20-30 years.

Falling from top of Mt. Everest to the bottom of the Marianis Trench

I use this analogy when friends ask me how I am doing.

Physically, prior to the event I considered myself extremely fit, able to climb to the top of Mt. Everest. Directly after the event I had fallen to the bottom of the Marianis Trench. Currently I am metaphorically swimming at sea level. The climb back to the top will probably take just as long as it took me to get into that kind of shape. Even after four years of no exercise I still am cardiovascularily fit which probably helped me survive the event.

Sunday, September 12, 2010

Stroke fatigue

This is one of the least understood side effects of a stroke. While I was still in the hospital if I had 10 minutes between therapy appointments I would fall asleep. I was also on the general muscle relaxant, baclofen, which was supposed to lessen my spasticity. It didn't do that at all so I was left with the side effect of extreme fatigue. Finally talked my doctor into trying something else. Zanaflex, which was no better, also a general muscle relaxant.. Since there was no diagnosis on what was causing the fatigue I self-diagnosed myself that I had sleep apnea. It was proven correct after going thru a sleep study in which I would quit breathing 6 times an hour. This was a fairly mild case of sleep apnea but I did convince my doctor that I wanted to get a CPAP machine. What a mistake. With the positive air pressure going into my nose constantly, I had to actively concentrate on my breathing to make sure I could exhale against the pressure. It worked for about a week but I did not get any lessening of the fatigue. I finally quit using it during the second week when one night I spent two hours concentrating on breathing thru the mask. At that point I decided that living with the apnea was more restful than trying to use the CPAP machine. I have no idea what waterboarding feels like but that is how I would describe the feeling of breathing against the CPAP machine.
I have heard that our brain is about 2% of our body weight but uses 20% of the energy, so the speculation is that the brain is rebuilding as it recovers and needs that much extra energy.. If I want to function at work I have to have a large cup of coffee. On weekends I can sleep for 10-12 hours or take 2 hour naps during the day. Personally I think there is a chemical imbalance in the brain after a stroke and researchers just need to focus on that. Recovery could occur so much faster if we all weren't battling fatigue all the time. For myself I am still quite cardivoascularily fit, resting heart rate of 53 at age 53 puts me in the athlete category. If I am an athlete, why am I so fatigued all the time?

This article basically says I don't know
Why am I so tired after my stroke?

Its a tossup between spasticity and fatigue as to which I consider worse and neither one has any understanding of even how to approach it. With a stroke survivor in charge we would at least come up with some ideas rather than washing our hands of it.

Friday, September 3, 2010

Insanity and neuroplasticity

1. Can neurons in the brain handle 2 separate tasks? I think the answer is yes;

2. If not then how is it decided which parts of brain function are thrown away to neuroplastically recover the dead areas. Hopefully the thrown away parts are like toe control rather than cognitive areas which could lead me to insanity.
There is this myth that only 10% of the brain is used so therefore you just need to activate the other 90%.
Would be great if I could somehow get researchers to answer these questions.

What oc1 or 0c1 stands for

My email address is letters OC and number 1 standing for Open Canoe 1 person, a term used in whitewater canoe slalom racing. Not to be confused with number 0 letter C number 1, This confused my colleagues at work since that stands for  system abend in mainframe programming and led to questions as to why I would use it for an email address.
0C1 - The current machine instruction was invalid.

Possible causes & Solution:

1. A JCL DD statement was either invalid or missing.

2. An attempt was made to open a data set which was already open.

3. A read/write was attempted to an unopened data set.

4. An attempt was made to execute a subroutine which was not link edited into the load module.

5. The select clause was invalid for an isam data set.
Not stroke related at all
It was interesting that the term OC paddler actually has been taken by Outrigger Canoeing rather than Open Canoe. Maybe someday I will travel to Hawaii and get to paddle one of them.

Thursday, September 2, 2010

stroke survivors sayings

During therapy of acute and chronic rehabilitation there are numerous sayings that are given to us. This is my opinion on the meaning of them.

1. Recovery takes place during the first 6-12 month period. This is probably from the blood being reabsorbed in a hemorrhagic stroke and for an ishemic stroke the penumbra area was knocked unconscious and recovers in that timeframe. This is what can be called the spontaneous recovery. The stroke recovery can continue for years and medical staff that repeat this have not been following research in the last 10-15 years. Neuroplasticity has proven that recovery can take place even years later.

2. You will not recover. With hard work there will be some recovery, this is only true if the survivor gives up trying to recover. In this case you should definitely not listen to your medical staff.

3. Use it or lose it. Basically what it is trying to say is that if you don't use your brain to control your body that part of the brain will lose the ability to be able to control the body part. So you get the comments that you need to keep working on even the slightest movements. This seems to be the reason that there is this great push to get movement in the early months of rehabilitation. I think in some cases this is incorrect. For example in my case I have a huge dead spot in my brain so I can't lose anything more by not using it, there may be pieces of the penumbra that this would fall under and be able to lose, unless the idea is that there is a backup location for brain control.

4. Do not exercise spastic muscles because it may make spasticity worse. I believe this is an incorrect assumption now. Here is an article on it about CP which I think also applies to stroke spasticity.
This study refutes that notion.
This book also reports on the controversy.

Anyway, now I try to exercise every muscle on my affected side even if the form doesn't look good. A lot of this is the difference between Bobath therapy vs. Brunnstrom therapy, Rather than trying to summarize it here I will point to a paper that discusses both. Diversity in Neurological Physiotherapy: A
Content Analysis of the Brunnstrom/ Bobath Controversy -

5. All strokes are different and all recoveries are different. (This has to be the stupidist statement). While I do believe that all strokes are different based on what part of the brain has died, saying all recoveries are different is just an excuse to not do the research that would point to a fact-based model of stroke rehabilitation.
6. Recovery is proximal to distal. Proximal is closest to the body, distal is furthest away. This would be saying that the shoulder, arm, hand, fingers would recover in that order. Based on where control is located in the brain this makes no sense at all. I and lots of other survivors heard this quite a bit with no research specified to back this up. It is true that shoulder and arm muscles are needed to deliver the hand to the work area.
7. You won’t recover’ spiel. This was a very common question on the stroke forums, with other survivors always replying, ‘I was told I wouldn’t recover and I am doing just fine. Don’t listen to your doctors, they don’t know anything.’
8.It seems we are once again left hanging with '’We don't know, try something yourself'. As Sargeant Schultz used to say, 'I know nuthin'
9. You're looking good. I absolutely hate this term. I may look good but the invisible deficits are there for me to experience.
And two about rats:
Amy Farber was diagnosed with a very rare disease, LAM, lymph-angiolio-myomatosis. She co-invented a revoluntionary web service with MIT Media Lab that enables patients to participate in the search for their own cures. For the past five years Farber has been battling not only her own disease but also the wall of resistance erected by those who believe that a patient can make about as much of a meaningful contribution to the process of scientific discovery as a laboratory rat.
"and it seems we are again thrown back to [a] statement from the 80s, saying that 'The outlook for stroke therapy is excellent ... if you are a rat.'"And the complete failure from the National Stroke Association: A question on spasticity therapies.'this question falls under our organizational guidelines as a medical inquiry and we defer to the medical community to respond.

Brain reserve

I hope there is more followup on this, sounds promising.

The secret life of the grown-up brain : the surprising talents of the middle-aged mind / Barbara Strauch. Gives me hope that my middle-aged brain is still working pretty well.
 I took a facebook IQ test a while ago, still at 144 so I guess I still have some useful brain cells. So far my neuroplasticity work hasn't resulted in canibalization  of my cognitive abilities to restore motor control.

I probably used up all my reserve just surviving my stroke and getting as far as I have with my rehab. It probably means that if I get dementia or Alzheimers I will not have any reserve capactity left to not be disabled by it. So I'm screwed.