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Above: Left leg still weak, so skiing backward
in snowstorm, Snowmass, CO March 2006
one year post-stroke Three Years Later: Six
years later STILL MAKING PROGRESS
This site was thrown up quickly to provide family and friends current info on
my stoke (likely a blood clot in brain which paralysed my left arm and leg, and affected my speech musculature, on March 23,
2005.
Info on my stroke:
To right,
reverse chronology; Day 1 at bottom
Below is letter to students, MRIs, General Stroke info.
Rick Rayfield PhD
Tempest Book Shop
5031 Main St
P O Box 819
Waitsfield, VT 05673
rayfieldvt@aol.com
rrayfield@sjc.edu
802-496-5667 home
802-496-2022 book shop
802-229-8237 car
family
Holliday Kane Rayfield MD, wife
Rikki Tracy Rayfield, Wellesley College '07
Murilla King, nee
Murilla Onriette Rayfield, Marin County, California
Sophie Rayfield
Miranda Rayfield
PhD, 1980 University
of Chicago, Biopsychology
Dissertation adviser- Israel Goldiamond
A.M. 1977, same as above
A.B. 1974
University of Chicago, Philosophical Psychology
program director- Eugene Gendlin
1979-1986 Roosevelt University,
left as Associate Professor
Teaching psychology, animal research lab, university council and senate chair, art history
student
1986-present Tempest Book Shop, owner
General book and music shop near Sugarbush
and Mad River
Glen ski areas in central Vermont
2000-present St. Joseph College, W. Hartford, CT
Adjunct Professor, two
courses per semester,
Program coordinator for on-line
Liberal Studies starting Jan 2007
1991-2000
various adjunct teaching stints at Norwich University in Northfield, VT, and Trinity College in Burlington, VT
1974-present
Rayfield Equipment, owner
Use of computers and hardware for:
Psychology lab operant research equipment
Animals and human labs including LAN
Oxygen uptake (VO2 max)etc. measurement
A-D hardware, software, gas
volume meter,
expired air sampling chamber
Pulmonary COPD wash-out measurement
mass spectrometer analysis
of helium and
sulfur hexafluoride in single breath
research published in the Journal of the Experimental
Analysis of Behavior, Behavioral Research Methods and Instrumentation, and Swimming Research.
Chaplain, Mad
River Lodge #77, F& A Masons of Vermont
Drama director, Valley of Montpelier, Scottish Rite; 33rd degree
former Scoutmaster, 1975-1986, Boy Scout Troop 599, Chicago
Cub Scout Pack 798, Committee Chair 2011
Waitsfield UCC Choir, 1988-present, baritone/bass
Mad River Chorale,
2000-present
MRC Cabaret Troupe (Cafe Noir) 2001-2007
Green Mountain Opera Festival 2006, 2008, 2009, 2010,
2011
hobbies- homebuilding, metal sculpture, astronomy, amateur theater, apple trees, windsurfing, skiing.
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above-
MRI of my brain after the stroke. Vertebrae coming up from bottom. Lateral ventricle
is dark in middle, with cortex wrapped above, and brainstem below. The clot and affected area are too small to
see. There was swelling in an area about the size of a finger tip in the pons. Part of the corticospinal nerve which controls
the left side of my body was killed, and part of it was damaged and probably recovered. My left side may also have recovered
by recruiting the ten percent of the corticospinal tract which does not cross over. Or something else.
Below are the diary entries, most recent first for updates.
The original freaky stroke experience is at the bottom. Jan 7 2011 Coming up on six years, I still have enough symptoms to continue this log.
I am still doing everything. But I am still occasionally tripping or loosing balance, which I attribute
to my weak left side, rather than age or klutziness. I still choke occasionally on my own saliva, but that
has continued to improve. My leg still shakes when tired or emotional, but perhaps I
am less tired and less emotional. I still need to pay extra attention to signals to take a leak. Standing on just my left leg to do yoga is still difficult, but improving slowly but
significantly. I continue to do my physical therapy exercises, stepping, and rotations, but I miss about
every other day. I do some of them daily in the shower. I can do gentle body rotations, and shallow knee
bends at the same time, and also brush teeth with one hand, and wash hair with the other, and hum music,
and think about triangles with integer sides (3,4,5 12,5,13 et al). I
have a feeling that when this brain tumbles, it will be a mess. I
took up tennis- after a thirty year hiatus- last summer with Holliday, and built a wood deck 12 by 16 feet and backboard on
the garage to practice at home. Should have done that years ago. Right after the stroke. Fast
easy fun exercise. Outdoors. Cheap. One of my voice teachers told me my voice
has had a vibrato since the stroke, which need control a times. I am now conscious that I cannot sing notes
as steadily as I believe I could before the stroke. This is consonant with the general recovery,
but loss of precision for the whole left side. Darn darn darn. But am I not a lucky fellow to have recovered
the ability to do eveything, even if with less strength and control? Everything
heals less quickly at age 58- muscles, joints skin. So I need to stay in shape so as not to have to risk
injury to get into shape, and I need to be careful to stress myself steadily, but avoid injury.
This has been hard in my new machine shop as I keep getting nicked and sliced by my new tools and flying parts.
I am pretty sure these injuries are not age and stroke related, but rather lack of sufficient care with new power tools
working metal and sharp plastics. I worry little about a
second stroke at this point. I continue on one adult aspirin and 20 mg Lipitor (from India) and vitamin
pill daily. I must keep up the rehab or I backslide quickly. Baking is good exercise for my
hands, and I can do kneebends while I knead. I should be surveying the stroke literature to
better understand any changes in knowledge, prevention, and treatment. Let that be my New Year’s
resolution and concluding sentence. Oct 31 2009 Halloween I can
still measure progress. Yoga poses standing on the left leg are getting better. My favorite mental trick for that is to imagine
pushing the earth away as a big ball under by foot as it tries to skitter from side to side. Somehow that works better
than trying to feeling like I am standing balanced. Clonus is reduced in several situations, perhaps because I am less
emotional or nervous about it. I limp more commonly when tired- perhaps because I have been more tired lately
with a new job, perhaps because my new job has kept me from staying in better physicaly conditioning. perhaps becasue I am
inattentive to it when it happens and fail compensate. Kids are a ball, all my jobs are fulfilling- bookselling,
teaching, research. Research work involves machine shop work to build apparatus; hand strength and dexterity seem fine,
but I am being cautious. Almost no choking on saliva recently. Possibly just better movie watching posture, or
worse. Haven't found swallowing exercise that might strengthen that which I maintain. Planing to play harmonica and
tuba version of Handel's Alleluia chorus next month- maybe that will test the throat. March 23
2009- Four Years Later The best revenge is
living well. Check. The next best thing is not having a second stroke. Check.
(as far as we know- the brain being capable of performing well even with big chunks gone, or failing completely
when the wrong little piece is damaged.) I still remember vividly the friends, acquaintances, and
strangers in my messy bedroom on that questionable morning four years ago. I still marvel that it took
all day before the stroke symptoms settled from general weakness of the limbs and tongue into left side paralysis.
What we might have done if we had known. But we did not know, despite CAT and MRI. We never saw
the cause- the clot we figure. We saw the damage in the pons the next morning on the MRI and inferred the clot.
Enough of the past, how about now? Still progressing. Physically- the current focus is on hyperextending the left leg
with strength and control. That’s bringing the knee back into a locked position. I had been working
mostly on a forward bent knee, athletic position in both rehab and yoga exercises, finally able to maintain reasonable balance
standing on just the left leg. But the next yoga pose called for locking the knee back. Fascinating to
feel the brain relearning those control patterns, and also feel the ache in the muscles which were not employed recently. I want to talk about music and theatre. Every week I learn (or relearn)
two new pieces of music for my church choir, plus I learn music in my community chorus, and soon the opera chorus kicks in
again. Marriage of Figaro. Every month I learn one or two parts in the plays- or degrees as we
call them- in my Masonic organization, the Scottish Rite. And in my teaching, I lecture primarily without
notes. My brain is constantly called upon to prepare and learn new material. New passages
of music and words, new strings of concepts to show students the interlocking pieces of the puzzle in the
field which is a part of the universe of human knowledge. I cannot help feeling that this constant activity
of learning and relearning is helpful in my stroke rehabilitation. I can feel an urge to simply sit back
and coast- enjoying the rich pleasures of listening, watching, reading, and conversing, without effort to change what I know,
think, and do. It would be enough to say I am walking and talking. A miracle indeed.
But not enough for me, not enough to raise my kids to their best, not enough to be my wife’s partner instead
of patient. Still on atorvastatin and adult aspirin.
Still a control subject in PFO closure study. The clonus continues to slip deeper into moments of fatigue or extreme emotion.
Choking on my own saliva continues to be less common, not gone. Limp when tired. Tired sooner- but that
may be frustration, age, stroke, or late night work. I can still feel that my left side is different. I try to start each
day with bicycle, yoga, and PT exercises. Rev ‘em up Rick. 26 February 2009-
I continue to make slow progress. I can do yoga postures that involve standing balanced on the left leg for longer.
I have less cramping, but I also worry this is because I am not pushing the leg harder. Guitar playing is creeping
back. Swallowing mistakes seem less frequent, but perhaps I am simply learning not to fall asleep at the wrong angle.
No news from neurology on the PFO closure study. Still using atorvastatin (Lipitor) made in India, yum. I went skiing
this week, and reminded myself that exercises are not nearly as much fun as skiing or biking or lumberjacking, nor as good
exercise. Sept 23, 2008 Three and a half
years post-stroke
Still making gradual progress toward normal leg function and swallowing, the remaining noticeable deficits. Good posture
solves the swallowing. Slouch and choke. The leg continues to surprise me- I could not control shaking with any of my
tricks recently during an emotional public presentation. But more than ever, the clonus is under control. I try to start
each day with a few minutes on the stationary bike, then a combination of yoga and PT exercises. Just ten to fifteen
minutes helps the leg feel closer to normal. I have been helping a neighbor who fell from a horse in June and damaged her spine at C5. She is largely paralyzed
from neck down, and the slow modest recovery makes us less optimistic than at the start. Because she has no family other
than a teen adopted daughter, three of her friends are trying to help her manage her recovery and her life, with help from
about 70-80 additional friends on our mailing list. She requested my involvement because of my successful stroke recovery. Her
accident is much worse than mine, involving the whole spinal column rather than “just” the left side’s motor
tract. It has been a challenge to help, but very satisfying to be part of a community effort, and to lend my modest expertise
on neural recovery.
My life is a continuing balance between accepting a permanent injury which is still giving way to some progress, and accepting
life in this different mode. I windsurfed this summer- perhaps the most physically challenging activity I attempt. My
guitar playing is reasonable given my lack of practice. I tire easily, but that may be age, ambition, or the stroke. Happy
to be reporting. Taking my meds- apirin, Lipotor, and vitamins, and not expecting another stroke. March 23, 2008 Third Anniversary of my Stroke I am on the Snowmass ski trip I had to miss due to my stroke in 2005. This is the third ski trip since
then, and each finds my skiing better. I am somewhat focused on teaching my three year old to ski- but I am in better shape
than last year. Continued exercises, supplanted largely by rehab exercises and yoga stretching and stationary bike, have me
feeling more normal, though the altitude and stress of travel- heavy bags, poor sleep- accentuate my clonus and limp, against
which I have made such good progress. My goal is still to have my left leg and foot feel and operate as normally as my left arm and hand. I
know the loss of motor nerves may make this impossible. I may always detect an asymmetry and weakness. I continue to
make progress, some from persistence and slow dogged determination to keep trying, but some from unexpectedly directions.
So I will not give up this goal.
A second stroke is off my radar, but I have a thumb-drive around my neck with my medical records. I continue my meds-
the latest atorvastatin was purchased on-line from Texas and made in India. Continued compliance has not been a problem. I
probably should be better prepared for another stroke, but life goes on. I would not be able to continue exercises except
that I can do them while cooking, showering, brushing teeth, talking with customers, watching movies, etc. Saliva and water slipping into my trachea is still
a problem but seems better, perhaps I should be recording it diary fashion. The clonus has definitely improved since
restarting rehab. When it does occur, I tackle it with either strength or shifting the pressure on my foot. I still feel
emotionally more labile- more easily brought to tears or laughter. This may be due to my brush with mortality, or a neurological
side effect. I am sure my reflexes are still brisk. Even if my improvements are very modest, the risk of slipping backwards and shortening or shrinking
my life is motivation to continue the effort to beat back the stroke symptoms. I continue to be thankful to my family
and rehab people for the inspiration and mechanisms to continue the effort. Jan 14, 2008 Stubbornly determined
to get as close to normal as possible.. I am back in physical therapy with Joe Grant at Back to Action. He has given
me lots of exercises to strengthen the left side (torso AND leg), and improve balance and whole-body coordination involving
the left side. Significant progress already. Weights and steps in my fourth floor yoga-exercise room with 60 degree windows
at tree-top. Stationary bike which starts the morning is downstairs. Great to get the body into full gear to start the
day. Typically we reach peak in midlife, and then slide down to eventual demise. By trying to get my performance
back up to normal, I am improving my life now, and extending it in the future by pushing the curve back up. Both worthy of
the continued effort. And all useful for preventing another stroke. October 23 2007 Two years and a Half I
am amazed that after two and 1/2 years, I have not habituated to the weakness on my left side. Perhaps I am perceiving
the asymmetry with the right, unlikely since my left and right arms are quite asymmetric but feel normal. Perhaps I
simply recall what it felt like. Perhaps I am detecting the errors in balance and position as I move, since lying still
feels normal. Perhaps the core kinesthetic feedback circuits are not as plastic as circuits for learning or forgetting activities.
Always trying new exercises, most recently kicking as high as I can in the shower, with tile marks as goals. Just started
Bikram yoga- strength, stretching, and coordination. This week I put on a right sock while standing with right leg on left
knee. Progress!!! March 23 2007 TWO YEAR ANNIVERSARY
I am still making progress. First I want to thank everyone who has helped me continue to recover. My initial gratitude
is to my family who has been universally supportive, the ambulance crew, my teachers who taught me to recognize the approproriate
way to react to my symptoms, the medical professionals that treated me, tried to track down the reason for the stroke to prevent
another, and provided rehabilitation expertise. People in our community were supportive and helpful- with food, rehabilitation
suggestions, emotional support and encouragement. While the need for all those things was most critical in the time
right after the stroke, I want to say that my appreciation has not diminished after two years.
That support continues from the medical professional as I regularly re-evaluate medication, progress on the literature
on stroke, my MRI images, and rehabilitation methods. On Jan 1, 2007, I embarked on a much more
strenous program to build strength in my weak left leg. Not wishing to buy the recommended Stairmaster, I instead began
a series on knee lifts (3x100/day), toe push ups (3x100/day), and knee bends (3x100/day) in addition to my sloppy usual exercise
regimen. The improvement in leg strength as the three month initial period ends is striking. I still limp,
but less, and the leg feels stronger in a number of common tasks. I expect to see improvements in my skiing this
week. I am tired in the evening, which I blame on the stroke instead of my age and daily activity.
Perhaps the stroke has become my whipping boy. It sure is good to be living life fully.
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To my students: April, 2005
Despite my excellent
health, I had a brain stroke March 23rd. It cancelled my trip and I was in a rehab clinic. I lost all movement in my left
arm and leg. My speech was affected but recovered quickly. Ambulance at 5:00 a.m. CAT scan, Two MRI scans. Transfer from
local hospital to regional med center in Burlington.
For those of you who have some physiological psychology, the
stroke was a blockage of unknown cause in a small blood vessel in my pons. The pons is mainly a relay center in the brainstem,
located between the medulla and midbrain, with the cerebellum(motor coordination) connecting into it. Nearby relay nuclei
for facial and other cranial nerves may have been disrupted causing my speech problem. The lack of oxygen killed nerve fibers
that connect the motor cortex to the spine (the corticospinal tract) on the right side of the pons. This motor nerve tract
crosses over in the medulla, hence the left arm-leg paralysis.
The sensory nerves for the arm and leg rise up through
the pons in a different tract, an afferent one, the medial lemniscus. So my sensation in the left arm and leg is normal.
This is good, because the sensations are critical feedback to relearning “use” of the arm and leg with the few
motor nerve fibers that were not killed by the stroke. These few fibers were traumatized and are slowly functioning again.
The now-disconnected motor nerve cells which run from the spine to the muscles MAY get some new connections from
the few remains of the corticospinal tract. And out at the muscle, muscle cells which have lost innervation will send a chemical
(we think) signal for nearby working nerve cells to grow out new collateral branches. Also, some of the corticospinal tract
do not cross over, so I may be able to use some left cortex signals to control my left side. Actually, we do not fully understand
recovery from stroke. But 85% of recovery occurs in the first month.
At first my left side was paralysed and my speech
was slurred. Already I can walk up a flight of stairs. My arm and fingers move weakly. Perhaps these things would have
healed anyway, but I have thrown every bit of energy into the healing and relearning process. One nurse described me as
‘gung-ho”. The data indicate that the amount of recovery is partly a function of effort and therapy, especially
early on. I have a good shot at over 90% recovery. My speech is already back over 95%.
I do not have time
to be depressed… my family needs me and I love living too much, so every waking minute I am giving my best effort.
I have the further advantage of being buoyed up by my family, and by a community that includes my church, my community chorus,
my daughter’s school, my Masonic lodge, and my book shop colleagues and customers. I take about five minutes a day
to sob and feel sorry for myself. Tears come easy. Then it’s back to healing, and enjoying each day of that difficult
process. In a way I have had it easy with such great support, good doctors and therapists, and steady progress. On the
other hand, those advantages are partly due to my choices to be involved in my community in an active way. Enough preaching..
I was discharged from rehab on April 4th . Now it’s out-patient rehab. I am back at SJC. Maureen
Travis kindly volunteered to cover Behavior Analysis until I got back. Carole MacKenzie is co-teaching Human Sexuality, with
me until the end of the semester. In both classes, you will have to take some additional responsibility for your education.
Swapping profs midsemester is not ideal- I thank you for your understanding and the extra effort you will put in to learn
what you want, what you need, and what the changed course will require(i.e. figuring out what the new prof is looking for).
A silver lining is that you get a second point of view and expertise in your class(es)
Because my stroke has
been such a learning experience, I am happy to answer questions about it,
Because I have certain areas of interest,
I am happy to answer questions about the course material.
Thanks again for your patience and understanding,
Best,
Rick Rayfield
I estimate that my stroke killed 250,000 to one million nerve
cells connecting my motor cortex to my spinal cord. This is based on the size of the stroke area and the diameter of corticospinal
cells, and the fact that after recovery I had less than 10 percent strength, and some of this was probably from other fiber
tracts- retrained nerves. Ouch.
The stroke area, as well as dying nerve cell axons extending both up and down from
it, can be seen in magnified cross sections of the pons. The small vessel which we believe was blocked somehow, perhaps by
a clot, is too small to be seen on the MRI. The stroke area is detected by swelling (edema), which is the body's reaction
to the injured and dying nerve cells.
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reverse chronology of stroke diary
Downloads Word files to
view or save.
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MRI- horizontal section
Stroke is a loss of blood flow to brain tissue, leading
to injury or death of nerve cells in that part of brain. The cause is either bleeding in the brain, or a clot blocking a blood
vessel. Thinning blood helps stop clots or break them up- aspirin, Plavix, and warfarin are common. To stop bleeding you do
the opposite, encourage coagulation or do surgery.
Stroke is the second leading cause of death world wide, and
the third leading cause in the USA.
The cerebellum controls coordination of movements, NOT by modulating the motor
output nerves, but by informing the cortex- where motor output originates- about the sensory feedback from the body. You can
barely move without sensation. Luckily, my sensory nerve tracts were not "stroked". So what I recover is fairly
coordinated.
Stokes can be caused by a clot, or by bleeding. You must know which type of stroke it is before treatment,
as the therapies are opposite. Success of recent efforts at clot-busting with TPA apply only if you get to the hospital and
have a CAT scan or MRI that diagnoses the cause of your stroke within about thre hours. Not easy.
After childhood,
nerve growth is largely inhibited. The trauma of stroke may disinhibit nerve growth temporarily, allowing several weeks or
months for reparative nerve growth to occur. New drugs under study may widen this time window, or even reopen it. Long nerves
may require too long to reach their targets, and the pathways are likely blocked. But short connections that allow rewiring
and function shifting of interneurons in spinal cord, cortex, and elsewhere in the brain may be enabled during stroke recovery.
Much stroke treatment is aimed at keeping the blood vessels open and healthy, e.g.lowering cholesterol, stopping smoking,
losing weight, and eating more chocolate.
I had a cryptogenic stroke. I have a PFO (hole in wall between
left and right atria in heart, common in 10-30% of adults)
from Columbia research prospectus-
" Approximately
40% of cerebral infarctions cannot be classified as strokes of determined cause despite a complete diagnostic work-up and
are labeled as "cryptogenic strokes". Patent foramen ovale (PFO), a hemodynamically insignificant inter-atrial communication,
has been suggested as a potential conduit for paradoxical embolization in some patients with cryptogenic stroke. Among patients
with stroke of undetermined origin aged under 40, 50, or 55 years, contrast echocardiography has identified a high prevalence
of PFO. Most recently, we have found a several-fold higher prevalence of PFO in cryptogenic stroke patients, both in those
aged below and above 55 years compared to those with a definable cause of stroke. Thus, the association of a PFO with cryptogenic
stroke is significant not just for young but for all age groups. Since stroke is predominantly a disease of the elderly, association
of PFO with cryptogenic stroke could have more public health consequences in terms of number of total patients, than if it
were only associated with the young patients.
In order to assess the magnitude of the problem, the yearly incidence
of cryptogenic stroke and the prevalence of PFO in both the general population and the population with cryptogenic stroke
can be used to estimate the number of strokes attributable to PFO. The yearly incidence of stroke in the U.S. is estimated
at 400,000 to 500,000, and approximately 40% are cryptogenic. If one uses Lechat et al's findings and assumes that the prevalence
of PFO in the general population is 10% versus 40% in patients with cryptogenic stroke, then at least 48,000 strokes each
year may be attributable to the presence of a PFO. Cryptogenic stroke has a death or recurrence rate at less than 30 days
of approximately 3.0%, and one year death or recurrent stroke rate of approximately 16%. Therefore the national cost, as a
result of recurrent stroke requiring hospitalizations and due to lost-work days is enormous.
Although warfarin
or aspirin is often used, there is no consensus on the treatment of cryptogenic stroke patients with PFO. The rate of stroke
recurrence on medical therapy is unknown, and there is no data on the additional risk the presence of a PFO imparts on cryptogenic
stroke patients without a PFO. Some have advocated percutaneous closure of PFO, and reported on the preliminary results, but
the role of such an invasive and potentially very costly procedure remains undefine.
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