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:

Tuesday, August 24, 2010

sea kayaking

Just got back from a 5-day trip with Wilderness Inquiry to the Apostle Islands in Lake Superior. With a little help from the other participants I was able to fully enjoy and complete all activities. The first day was the tip test - proving you can pop your spray skirt and exit the sea kayak while upside down.  The only problem with that is once I was in the water my dry suit was so full of air that I floated like the Michelin man. I couldn't get my feet down to the lake bottom to walk in and had to be ignominously dragged to shore.
 Getting the dry suit on one-handed was an interesting exercise in patience, sometimes not too successfully when I would have multiple layers of ankle gaskets folded over cutting off circulation to my feet.

The actual paddling was quite successful, I could paddle for 5-10 minutes at a time, the form leaves a bit to be desired. But compared to last year(1 min. max) it was great, Still the best option would be to get a sit-on-top, would not have to worry about attaching the sprayskirt.

Dry bags, good thing I brought my own. They were thinner Sea-to Summit ones rather than the thick vinyl ones. With multiple smaller bags finding items became much easier.

Friday, August 13, 2010

stroke rehabilitation during sleep

Sleep is another time that I need to constantly think about what to do to keep my stroke therapy going.
I used to have a hand/wrist splint for nighttime use that kept my fingers and wrist straight but after 3 years of use the plastic rotted and it was time to be on my own. Specifically how to reduce the spasticity in my finger flexors, biceps, pecs. If I lie on my back my left arm will crawl into my lap. So I put my
hand under my butt, except that it is a clenched hand and during movement during the
night will end up in my lap. I try to hold my left arm straight out to my side as I
fall asleep by putting a pillow on it. As I wake up during the night if I am lying on
my left side I will place the whole arm between the legs to keep the arm straight.
When I try to lie on my right side i place my left hand under my pillow under my head
and flatten out the fingers. With all the thinking and moving about during the night
there is very little restful sleep taking place. Napping during the day is even worse
because keeping the arm straight becomes impossible.
I used to sleep face down with my nose over the edge of the bed to get maximum exposure to the night air with my left arm straight down by my left side. I can't do that anymore because my left arm burrows under my body. So I now either grab one of the spindles on the headboard with my left hand or hang my left arm off the edge of the bed, this is trying to get noth my bicep and pecs to stop firing.
I now put a pillow on the floor and try to sleep face down with my left arm hanging off the bed and resting on the pillow.

This didn't come from any medical staff so ask your own medical staff for help with therapy while sleeping.
Good luck with that question.

Thursday, August 12, 2010

What my doctor should have told me about stroke recovery

After four years this is what I expected during my hospital stay, with my therapists working on pieces to meet those needs.
I received no information on stroke rehabilitation or even what the damage from stroke consisted of from my physiatrists. This is what I believe I should have received. If the medical profession is not willing to critique their own information delivery then we will have to do it for them. Some of these references probably didn't exist 4 years ago but if the same stroke happened today this is what a good doctor should be able to give you.

If your doctor doesn't give something like this to you, Point blank ask him/her 'Who can I go to that will give me hope/answers?'     Remember the detriment of the nocebo effect.

You had a massive stroke affecting your right cerebral cortex, a clot plugged your middle cerebral artery at this location - shows me a three dimensional map of a brain and points out the location. This area here is the epicenter of the stroke, it includes the motor cortex, the part that controls your muscles on the left upper half side of your body. The pre-motor cortex was also destroyed, this does the planning for complicated muscle movements. The sensory cortex does not seem to have died. Your cognitive abilities were spared.

Because you had an ischemic stroke(clot) you will be started on warfarin, a blood thinner, eventually we will get you down to just using aspirin.

There are two types of damage to the brain, First is the epicenter, this area is dead, the second is called the penumbra, which is the area surrounding the epicenter that was partially damaged during your stroke. Recovery of the penumbra area usually spontaneously recovers in 6-12 months. This does not mean you can sit back and just wait for recovery to happen. The ability to move muscles in this area is fairly limited, in order to recover them to something close to pre-stroke levels, you will need to try very hard to move them even if they barely work. This may require thousands to millions of repetitions. The statement you will sometimes hear in regard to this is, 'Use it or lose it'. Any minimal movement you have will need to be diligently worked at. This is what can be called the easy neuroplasticity

The recovery of functions that were controlled by the areas that are now dead is much harder and will require you to neuroplastically move control to another location in your brain. Call this hard neuroplasticity. You do not have unused areas of your brain, the 10% brain use is a myth.

Neuroplasticity is the most important term for you to understand, read about and believe in.
These books give a good explanation of this concept:
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.
Stronger After Stroke by Peter Levine, This one is worth buying.

CIMT (Constraint Induced Movement Therapy) is a way to get movement back. The concept is your working side, usually your arm/hand is prevented from moving you will retrain your non-working side to be able to do the movement needed. This is quite useful for areas that are in the penumbra on the stroke.

If you find that your sense of touch is not up to pre-stroke levels this document will give you a good idea of what needs to be done.
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.
For recovering the functions that were in the dead area there are a number of possibilities. Here are printouts of research studies. None of these are far enough along to have therapy protocols but this is the best we can do right now
1. Passive Movement, moving the affected limb with the good limb.
The effects of repetitive proprioceptive stimulation on corticomotor representation in intact and hemiplegic individuals.
2. Mental imagery, Imagining doing something like playing the piano or whatever you used to be able to do with the affected side but can't now.
Efficacy of motor imagery in post-stroke rehabilitation: a systematic
Andrea Zimmermann-Schlatter*1,2, Corina Schuster2,3, Milo A Puhan4,
Ewa Siekierka5 and Johann Steurer4
Using Motor Imagery in the Rehabilitation of Hemiparesis , .
Archives of Physical Medicine and Rehabilitation , Volume 84 , Issue 7 , Pages 1090 - 1092
J . Stevens
Mental imagery for promoting relearning for people after stroke: A randomized controlled trial1 , *1 .
Archives of Physical Medicine and Rehabilitation , Volume 85 , Issue 9 , Pages 1403 - 1408
K . Liu , C . Chan , T . Lee , C . Hui-Ch
Mental practice and imagery: a potential role in stroke rehabilitation. Author's reply
R VAN LEEUWEN, JT INGLIS, J RAVEY - Physical therapy reviews, 1998 -
3. Mirror-box therapy, This is watching your good hand/arm arm in a mirror. The reflected image looks like the affected hand/arm is moving. This tricks the mind into believing the affected arm is being used.
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
4. Music therapy, music has been proven to help initial recovery, So while you are in the hospital you will have a selection of music to listen to.

One of the main deficits that survivors complain about is the fatigue that seems constant. We do not have any solutions for this but to suggest that you try to increase your cardiovascular capacity.

The second major deficit survivors complain about is spasticity, abnormal stiffness of your affected side. You will need to stretch those muscles. Stretching does not cure the spasticity but it does prevent contractures, which is the permanent shortening of tendons and muscles.
Some of the recommended interventions for spasticity are stretching, general muscles relaxants, ITB(Intra Thecal Baclofen Therapy), botox, phenol, serial casting, tendon rearrangement, tendon snipping. None of these are cures, they tackle the side effects of spasticity. The cure is to get brain control of those muscles again. The best way to do that is to exercise the muscles that are spastic.

Recovery is a long drawn out processs, brains do not recover like other parts of your body. You will need to work at this for years. The only way you will not get better is if you decide that you are satisfied with where you are at and stop working at your recovery therapies.

Changes will barely be able to be noticed after one year so you will need to stay persistent and positive about your recovery work.

Your Physical, occupational and speech therapists will give you rehabilitation exercises to follow both here and at home. Doing them will not easily bring back your lost functions but they will bring back more than you have today.
If you get depressed, come back we can provide some medications that can help.
Good luck and keep in touch.