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, October 28, 2010

woodworking and stroke rehab

I used to do a fair amount of woodworking, I have the tablesaw, several routers, mortiser, planer, jigsaw and pneumatic nailers and staple guns.I built the medicine chest and cabinet for the bathroom. also the complete upper and lower kitchen cabinets. Our compost bin was falling apart so one weekend when my wife and daughter were out of town I cut cedar 2x4s to length on the tablesaw using my sliding sled, They were butt nailed with my pneumatic nailer and the screening attached with my pneumatic stapler. I was quite proud of my accomplishments. However my wife saw it differently as a complete lack of higher reasoning. In her defense she had recently seen me sneeze at the kitchen table during supper and sweep the plate and glass from the table with my left arm, breaking them. Her reasoning being that woodshops produce dust, dust causes sneezing, and cutting off the non-functioning hand is not a good idea. I however reasoned that only doing crosscuts and doing them with a sled would keep my left arm at least two feet away from the blade at all times. The end result was that I was banned from the workshop. She did the next year give me a gift of a beginning woodturning course at the North House Folk School in Grand Marais, MN and the next Christmas got me a lathe. She thinks that because no sharp objects are spinning it is safer. When I relate this idea to woodturners I have met they invariably mention how many holes are in their walls from chunks of wood flying off the lathe. And then there was the story from the woodturning association I joined. It seemed that during a demo the month prior to me joining that there was an individual standing behind the demonstrator. The demonstrator had on the apron and full face shield, his turning gouge caught on the wood and was thrown over his shoulder. The bystanders eye was put out. I do wear safety gear when turning but I haven't related any of these horror stories to her yet.
My hope with this as rehab is first that the vibrations of the gouges on the left hand will wake them up proprioceptively and then start on the motor control.

Don't even think of doing anything as stupid as this. Remember your doctor has to ok all your rehab and check with your spouse also.

black hole of stroke rehab knowledge

A common question from survivors is, 'what should I do to have the best chance of recovery and my doctor hasn't told me anything useful?
You have hit the black hole of stroke knowledge. Nobody will tell you anything because they don't know.
If your doctors were good they would show you a 3d image of your scan mapped onto a brain and describe the penumbra damage and what functions were damaged. Then they would describe the dead brain areas and the functions those covered. You can try asking your doctors again but they will use the Sargeant Schultz reply, ' I know nuthin'. The problem is that everyone looks at the symptom of the deficits rather than the cause, which is the damage to the brain. You probably need to train your doctors in these concepts.

Friday, October 22, 2010

Standard response to stroke rehab questions

Since I post in numerous forums and there are lots of questions on what to do next I came up with this standard response. Of course this does contradict what you will hear from your medical staff; 'All strokes are different, all stroke recoveries are different.'

The whole problem here is that the medical world does not have any clue as how to approach getting stroke survivors back to full recovery. They are hoping that your spontaneous recovery in 6-12 months is enough to satisfy you. What needs to be done is identify the penumbra and those functions, these are helped by standard therapy protocols because you still have a limited ability to do those functions and repetition will help recover them. The second part is to identify the dead brain area and the functions they covered. This requires a totally different approach, mainly you need to neuroplastically move those functions to another part of your brain. Some therapies than might be able to accomplish that are; mental imagery, passive movement, mirror-box therapy, thermal therapy. I would say your crucial answer is to completely understand neuroplasticity and find therapists who understand how to do that. But what the hell do I know, I'm just a stroke-addled survivor,

Wednesday, October 20, 2010

car driving and stroke rehab

I got back to driving after 1.5 years. My doctor never cancelled my license, but my spouse had me take an adapted driving assessment anyway to check my reaction times and have a driving test with a car with an automatic transmission and a spinner knob on the steering wheel. I'm right handed - my good side so I would have to reach around the steering wheel to turn on the turn signals. That is the hardest thing to coordinate because you have to be going straight while doing this. I didn't have left neglect so that was not an issue. Had to buy a new vehicle with automatic transmission since the two we had were manuals.  I've been driving for over 3 years now I do have to pay a lot more attention to what I am seeing, checking the mirrors constantly since blind spots are harder to see into. Backing up is something I try very hard not to do. One constant problem is where to put my spastic left arm, if I put it on the outside of my left leg , that pushes the leg into the steering wheel. So it is possible but you may have to solve some problems on your own. You are limited in when you can change the radio/CD player, work on the defroster/heater. You basically have to wait until you are stopped to do anything else. There is no multitasking when driving, no drinking coffee, sodas, pop or eating snacks, even talking is sometimes too much.
My first woodturning class in Grand Marais was in March 2008 and driving home at dusk, a deer ran in front of my car. I managed to at least slow down a little by hitting the brakes, killed the deer, kept the car on the road. Luckily it was still driveable. Since  it was a deer accident it was fully covered by comprehensive with no deductible. Some 3500 dollars in damage.
Took a homebrewing class 2 years ago at North House Folk School in Grand Marais,MN about a 4.5 hour drive for me. Last year I looked at my turn signal and tried to figure out a way to start using the affected left arm to turn it on and off. Since I can't lift my arm when sitting I thought about putting my arm on the window edge but it just slid right down. So I bought a gel padded arm rest that slides into the window opening about 3x6 inches. My pectoral spasticity just pulled my arm right off the pad. So I thought some more and bought some velcro straps and attached them to the pad and velcroed my arm to the pad. The pectoral took over again and after 1 minute pulled the whole thing from the window. So on the drive up I thought I would just loop the velcro over the car door frame and attach it to my wrist brace, mainly to try to quiet down my pectoral by keeping it in a stretched form and keep my arm straight relaxing my bicep. I was sucessful at that for about two hours when my bicep started flexing and I had to stop because the weight wasn't distributed properly. I needed more velco in order to pull the whole arm forward and another piece to hold up my elbow. So I went to Joynes Ben Franklin in Grand Marais and got more velcro. On the way home the setup worked for an hour. I can't move my arm to reach the turn signal but my objective has now changed to stop the spasticity in my bicep and pectoral which it does seem to help. This is only possible on long trips since it takes about 20 minutes to setup.
This is not medical advice, don't try this at home.

I went on a road trip to an Elderhostel program in Santa Fe,NM, Brain Skills Training in March 2010. I had to choose between flying there and driving. Driving won hands down. Cost was the same, I hate having to lug my luggage thru airports, especially trying to carry bags and walk with a cane so I don't tip over. I'm left side affected and I wanted to get in three days of driving therapy. I would put my left hand at the 11 o'clock position and just leave it there,. This meant hours of spasticity reduction in my bicep and pectoralis. My wrist was also cocked up at 80 degrees. I don't trust driving with my left arm alone so my right hand would always be on the spinner knob at the 4 o'clock position. Luckily I coud rest my right elbow on the center console. Changing CD's or radio stations would mean coming to a stop to do it. When my left arm got tired I would put it between my legs and sit on the thumb with the fingers dangling loose, this wasn't quite as effective in reducing my spasticity but still allowed hours of enforced stillness.
In order to combat the fatigue I still experience, I would get a large coffee from the motel and one hour later stop and buy another one. Drinking it did require stopping. This had a two-fold advantage, the caffeine kept me alert and the urge to urinate made me stop at almost every rest area.
As one survivor wrote about her walking, she had to "brain" her walking. In my case I had to expend 100% of my brainpower to drive. On Friday I drove 7.5 hours to Omaha,NE from Minneapolis including 4 hours in a snowstorm through Iowa. On Saturday I drove 9 hours to Denver. On Sunday I drove 6 hours to Santa Fe. I can see why the speed limits are 75 mph in NE, CO and NM, it takes forever to get any place.
No problems encountered on the drive.
On the way home I did get pulled over by a Nebraska trooper for weaving in the lane. This was because I had just gotten my left hand on the steering wheel coming down the on ramp and hadn't fully gotten control with my right hand. In the process of getting pulled over I had to switch lanes on the Interstate, which I did without signaling because I would have had to use my right hand over the steering wheel and I didn't want to lose control with a trooper right behind me. So I got a warning for inattentive driving, not signalling and not carrying car registration. I don't think he ever realized he was talking to a stroke survivor and I sure wasn't going to explain to him why I weaved and didn't signal.

Don't make any assumptions that if I could do this you can. Consult with your medical staff on your feasibilty. Of course I didn't but the OT that gave me the driving and reaction test said I did ok. And with 3 years of driving under my belt I feel pretty confident. This past summer I came up with another way to stretch my spastic left arm. I roll the drivers window all the way down and let my left arm dangle as much as possible outside the window. A couple of weeks ago I went to a Peter Levine seminar in Des Moines, IA which is a 4.5 hour drive. On the night drive down I did this for 1.5 hours until it got too cold. The wind blowing through the hand/fingers was great for getting additional sensory input to my brain. On the way back home I did the same thing again for 1.5 hours until it started to rain. That was very nice to feel because it felt like my hand was getting sandblasted. Great for overstimulating my sensory inputs.
Remember your medical staff has to ok all therapy, you didn't hear about this from me.

Tuesday, October 19, 2010

plane rides and stroke rehab

Ok this is just posted for fun.
What happened on my first plane flight?
On my 50th birthday my wife put up a series of questions about me for the guests to see how well they knew me. This was three months before my event.
The one I liked best was:
What happened on Deans' first airplane flight?
1. He got on the wrong plane and ended up in Fargo,ND
2. He got sick and threw up in his briefcase.
3. He jumped out.
And the answer is 3. He parachuted out.
I know this isn't a stroke related response and I certainly don't recommend this as a therapy.
One of the preparations for this was jumping from a picnic table to simulate the landing. At work there was some talk about our unit doing some skydiving, while I would gladly do it again there is no way I could jump off of any height and land safely.

nicotine and stroke rehab

Nicotine Holds Promise for Stronger Stroke Recovery
What you get with nicotine is the animals with stroke show better recovery and improvement. It speeds things up and you get to a higher level of rehabilitation.
It turns out that nicotine, in contrast to amphetamines, acts in a larger area of the brain and seems to act where the amphetamines don't - in the motor system. That's a real advantage, because one of the big problems in stroke is loss of motor functions.
 I have never smoked and don't plan on starting or using patches.

 Don't consider this an endorsement of nicotine being good for your recovery.
Ask your doctor for guidance on this.

Brewing and stroke rehab

I added a few lines to this and deleted the old post
I brew homemade beer. This is a multi-step process, First you boil 3 gallons of water with selected grains, malt extract and hops(wort), cool it down to 70 degrees to allow yeast to survive, add two gallons of water. The proper way to cool down the wort is to set the 5 gal. kettle in the sink with rafts of ice cubes. There is no way I can do this with a barely useable left arm/hand. So I siphon it into the fermenting bucket, filled with ice water. This of course introduces the possibility of contamination, but allows me to do this part by myself. The fermentation continues for 3-4 weeks and then is transferred to a glass carboy for final fermenting and settling of solids. Two weeks later after fermentation is done, the yeasties have eaten most of the sugar, turning it into alcohol. Siphon it to a bottling bucket, add 3/4 cup of sugar - This is to give the leftover yeasties something to chew on and carbonate the beer in the bottles. Bottles are filled and capped. I ask a friend over for this because the capper I have is a two-handed affair and it would take me forever to get it all done. The 5 gallons makes 48-50 bottles of beer. For the first 2 years I refrained from any alcohol because I thought it might slow up my recovery. Then I realized that recovery was going extremely slow anyway and I might as well enjoy a few brews during it. The current batch is raspberry and cherry stout.
This is all about compensation rather than doing tasks to help recovery.
This article

Alcohol Consumption and Functional Outcome After Stroke in Men

Selected lines are as follows:
A meta-analysis found that consuming less than 1 drink per day was associated with a significantly reduced risk of stroke compared to nondrinkers.
Light-to-moderate alcohol consumption has been associated with reduced risk of total and ischemic stroke. However, data on the relationship between alcohol consumption and functional outcomes from stroke are sparse.
Don't consider this an endorsement of alcohol being good for your recovery.
Ask your doctor for guidance on this. Women you are on your own, sorry.

Brunnstrom vs. Bobath(NDT) stroke rehab

I was involved in a stroke research trial and therapy students were running the experiment. I asked one of them, Which model of therapy are you taught? Bobath or Brunnstrom? He said he didn't know. My PT at the time was assisting the professor in teaching the class and I asked her about it. She said they were taught the difference but they were mainly ortho PTs rather than neuro PTs. I laughingly told her that she had better prepare them for patients like me that know more than they do. For those of you interested in this you can read this: Diversity in Neurological Physiotherapy: A
Content Analysis of the Brunnstrom/ Bobath
Well this article used to be here free in PDF form and I was able to read it -

And another comparison study of Motor Relearning Program vs. Bobath:
Objective: To examine whether two different physiotherapy regimes caused any differences in outcome in rehabilitation after acute stroke.
Design: A double-blind study of patients with acute first-ever stroke. Sixty-one patients were consecutively included, block randomized into two groups, and stratified according to gender and hemiplegic site. Group 1 (33 patients) and group 2 (28 patients) had physiotherapy according to Motor Relearning Programme (MRP) and Bobath, respectively. The supplemental treatment did not differ in the two groups.
Main outcome measures: The Motor Assessment Scale (MAS), the Sødring Motor Evaluation Scale (SMES), the Barthel ADL Index and the Nottingham Health Profile (NHP) were used. The following parameters were also registered: length of stay in the hospital, use of assistive devices for mobility, and the patient's accommodation after discharge from the hospital.
Results: Patients treated according to MRP stayed fewer days in hospital than those treated according to Bobath (mean 21 days versus 34 days, p = 0.008). Both groups improved in MAS and SMES, but the improvement in motor function was significantly better in the MRP group. The two groups improved in Barthel ADL Index without significant differences between the groups. However, women treated by MRP improved more in ADL than women treated by Bobath. There were no differences between the groups in the life quality test (NHP), use of assistive devices or accommodation after discharge from the hospital.
Conclusion: The present study indicates that physiotherapy treatment using the MRP is preferable to that using the Bobath programme in the acute rehabilitation of stroke patients.

This was my response to a PT blogging about using clinical experience vs. evidence. NDT has wonderful clincal experience but is not supported by the evidence.
From Tonis' blog
I'll give you my take on NDT(neuro Development treatment - the Bobath approach). My OT was trained in it and if you look at what I acheived with it you would say that it worked. I however think that any clinical experience with it hasn't split out the spontaneous recovery of the penumbra from what can be acheived with the therapy. Now that I have done lots more reading I prefer the Brunnstrom theory vs Bobath. The reason behind that is that NDT requires a therapist standing next to you telling you NO all the time. Brunnstrom allows you to use any movement possible. As a patient it is much more satisfying to be congratulated on some movement rather than constantly being told that what I am doing is wrong. And since I am now on the do-it-yourself model I am not going to be telling myself, No you are using muscles you are not supposed to. If it doesn't look good I will change it later whenever I neuroplastically get the dead brain functions moved.

And here is Peter Levines take on NDT:

Monday, October 18, 2010

depression and stroke rehab

If it occurs to you seek medical help, it is not easily overcome on your own and untreated really slows down your recovery.
Depression was not really present during the 5-week hospital stay, mainly because I was not told anything about how severe my stroke was or what the likelihood of recovery was. I was thinking that I would be back to normal in 9 months. The psychiatrist I saw in the hospital tried to get me to admit that I was mad at my body for failing me, I refused  to believe it because I was still under the impression I would recover fully and soon. After release from the hospital and research started on the internet did it finally dawn on me that I was totally screwed considering the physical deficits I had that barely seemed to get better. Anyway depression did set in around 6 months, I saw a social worker a couple of times. Persistence and never giving up are key to keeping going, I figure I have 40 more years of living to do yet and if I work hard on recovery they will be much more enjoyable that moaning about my sad lot in life.
Currently am seeing a therapist and taking Zoloft. It has provided a better attitude, but a lot of that is because I have figured out what needs to occur to recover, not easy but possible.
And anti-depressant drugs have been shown to help motor recovery. Although I'm not sure that I'm within the necessary timeframe.  Probably by increasing the level of serotonin in the central nervous system.
Prozac May Speed Physical Rehabilitation After Stroke

fingerprinting and stroke rehab

I work for a financial services firm. After I came back from my 6 month medical leave of absense there was a requirement that all employees needed to be fingerprinted. This was an expansion since before this Information Technology employees did not need to comply. I went and this was the non ink version, glass plate technlogy. The right hand went fine, both individual fingers and palm print. The left hand was extremely recalcitrant. On the glass plate if you press too hard it won't register because the ridges smoosh together.  I never was able to get the right pressure on individual fingers due to spasticity, even though I was holding them with my right hand. The operator excused herself and went to make a call to see if the left hand was necessary. She came back and said it wasn't. My speculation was that there was a realization that if I was going to commit a crime it would be with my right hand.
 I don't plan on working this into my stroke rehab goals but it was rather funny. This would be a good idea for a crime show. 'We have a complete set of left hand prints but they don't match to anyone'

Sunday, October 17, 2010

How to stay informed of stroke rehab

Add 'stroke rehabilitation' to Google alerts,  You will get a daily email containing 4-10 links that cover stroke rehab. 1-2 of them each day are worth reading.
Add 'stroke rehabilitation' to Yahoo alerts. This one gets you 1 link every week or so. not really worth doing since the Google one is better.
There are lots of neurological magazines you could put an alert in but google seems to pick those up anyway.
The google alerts picked up one of my blog postings
dean's stroke musings: Is the stroke rehab research emperor naked which was interesting because it didn't pick up brewing and stroke rehab.
Anyway I will have to put stroke rehab in all my blog posts to see if that works.

It worked!! Todays google alert had this entry in it.
dean's stroke musings: How to stay informed of stroke rehab
By oc1dean
Add 'stroke rehabilitation' to Google alerts, You will get a daily email containing 4-10 links that cover stroke rehab. 1-2 of them each day are worth reading. Add 'stroke rehabilitation' to Yahoo alerts. This one gets you 1 link every week or so.

So from now on all my titles will have stroke rehab in them. And after you read those web articles leave a comment for the authors taking them to task for the lack of detail they are providing.

Friday, October 15, 2010

You should be a bad patient in your stroke rehab

I have been reading a new book, Deep Survival : Who Lives, Who Dies and Why by Laurence Gonzales.This paragraph on page 82 I think should be applied to us stroke survivors.

Psychologists who study survival say that people who are rule followers don't do as well as those who are of independent mind and spirit. When a patient is told he has 6 months to live, he has two choices: accept the news and die, or rebel and live. People who survive cancer in the face of such a diagnosis are notorious. The medical staff observes that they are 'bad patients',unruly, troublesome. They don't follow directions. They question everything. They're annoying. They're survivors.
Make yourself into a 'bad patient'.

Remember, make sure you ask your medical staff for permission to be a 'bad patient'.

If you don't make your medical staff uncomfortable in their not answering your questions then you need to try harder. Make them feel guilty and maybe they will go back to their associations and ask for details on what to do for stroke patients. Nothing else seems to be working.

Is the stroke rehab research emperor running around naked?

Is the emperor wearing any clothes? I loved this parable. From all the research I have been reading I really can't tell if any of it is valid.
My concerns are;
1. There is no standardized definition of stroke damage. If you can't even define your starting point there is no way that research can be replicated.
2. No one seems to be separating the spontaneous recovery from the recovery due to therapy.
3. There aren't enough projects using scans to prove changes.
Maybe I am too stupid to comment on stroke research since million dollar words are used to keep us peons in the dark.

My Tai Chi exercises for stroke rehab

I took a tai chi class last year. A lot of the movements were too complicated for my abilities, all of the free swinging arm movements above my head were only possible in a compensatory way by using my right hand to grab my left and mimic the movement.
I was able to take some of the simpler moves and keep doing them after the class.
Elephant swing - hold both arms loosely at your side, rotate your body right and left letting your arms swing in front of and behind you. Due to the spastic left arm this looks rather stupid.
The wave - hold both arms at your sides, swing them forward and backward. I still can't do this, my brainpower is not enough to control two sets of muscles at once.
The bass drum - trace the outline of the rim of a bass drum clockwise and counter-clockwise in front of you. I clasp both hands together to do this.
The platter -trace the outline of the rim of a platter clockwise and counter-clockwise in front of you. I clasp both hands together to do this.
Natural stepping - stand on one leg and step forward and backward with the other one. I sometimes have to use my cane to stay balanced.
This is my personal exercise regime. Do not attempt any of these without checking with your medical providers.

Thursday, October 14, 2010

My abbreviated Background story 2

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

Wednesday, October 13, 2010

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

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

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.

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

Monday, October 11, 2010

The fall

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

Friday, October 8, 2010

Book reading list for stroke rehab

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

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

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

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

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

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

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

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
Cancer has stages and at least they tell you where the cancer is located.
I have heard of a couple of people who were told ccs of dead area but even they were not told where the dead area was. but alas I was told nothing.
from 1998
American Heart Association Classification of Stroke Outcome Task Force has worked to develop a valid and reliable global classification system that accurately summarizes the neurological impairments, disabilities, and handicaps that occur after stroke.
For stroke survivors to receive the best care, a comprehensive stroke outcome classification system is needed to direct appropriate therapeutic interventions
And these scales are based on deficits rather than the parts of the brain that were damaged. Here is the classfication system
I agree with the need but it is based on impairments rather than brain location and penumbra damage vs. dead brain so I think this is actually rather useless. I don't think this ever gained acceptence since no survivor has ever mentioned it.

Thursday, October 7, 2010

British Stroke Association

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

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

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.

Wednesday, October 6, 2010

hospital vampires

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

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.

Tuesday, October 5, 2010

Alzheimers and stroke

The following is a series of comments on a stroke forum where survivors worry about getting alzheimers. In a class I took the instructor stated that 40% of Azheimers diagnosises were wrong, mainly because general practitioners don't have the knowledge or ability to correctly diagnose it.
And sometimes brains from other sisters who appeared mentally intact when alive show extensive evidence of the disease.Findings from Nun Study Show Contradictions of Alzheimer's Disease
 I take this as hopeful so even if you have extensive Alzheimers you can still be mentally sharp. Which is quite a relief for me considering this article.
Research illuminates link between Alzheimer's and stroke
For years, neuroscientists have known that the risk of Alzheimer’s disease is nearly doubled among people who have had a stroke.
Research illuminates link between Alzheimer's and stroke

This particular article now speculates that what was normally considered to be a sign of Alzheimers -namely tangles and sticky plaques may actually be a sign of the fight against it. Which means to me that the nun study I quoted was probably not accurate New Science Sheds Light on the Cause of Alzheimer’s Disease
And AARP has better information than any of our stroke associations.

And then there is B vitamins - B vitamins may slow brain shrinkage
Although when I told this to a nurse, she said overdosing on B vitamins is not good.
I may have to figure out how to add to my brain reserve.The brain's reserve cells can be activated after stroke

You know the drill, don't listen to anything I have to say, ask your medical staff for information on this subject. If you are really lucky they won't say
'I know nuthin'

Monday, October 4, 2010

dead brain recovery options

Since I have huge amounts of dead brain these are the therapies I am using to try to get them moved to another location. This is not actually recovering the dead brain, it is trying to move the functions that area of brain controlled to another place. This is probably the hardest thing to do, especially with no research guidance or medical support on how to do this. So this is just my opinion only, try your doctors to see if they have anything better and then reply here.

mental imagery:
Andrea Zimmermann-Schlatter*1,2, Corina Schuster2,3, Milo A Puhan4,
Ewa Siekierka5 and Johann Steurer4
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:
The effects of repetitive proprioceptive stimulation on corticomotor representation in intact and hemiplegic individuals.

Thermal therapy:;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. 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.
 Mainly that the penumbra be identified so therapies can be directed for that damage
as compared to dead brain damage which should have completely different therapies.
Reading this is obviously not for laypersons, it may as well be written in Sanskrit.
 I did ask the question on PhysioBob if the therapists there had different protocols for penumbra recovery vs. dead brain recovery, but no one answered. I hope that was just because they don't answer survivors rather than they didn't understand the question.
At least it does prove that PET scans can visualize the penumbra.

Saturday, October 2, 2010

Cane exercise for stroke rehab

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.
It confirms my thoughts on magical stroke recovery.
Here is a clinical trial but I couldn't read it.

They replied back listing this research as proof.
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

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.