Sandy Simon - his story in words and pictures 

SandySimon.co

I have received many positive reports on the benefit of my book, A STROKE OF GENIUS – Messages of Hope and Healing from a Thriving Stroke Survivor. So I am writing will share my story with anyone not familiar with it.


I wrote A Stroke of Genius to help people who have suffered and survived a stroke, their caregivers, loved ones, family, colleagues, friends and therapists everywhere. The book has sold thousands of copies and many who have read the book have written that the book has encouraged them and, as a result, hundreds of survivors and their families now look forward positively to a full and vibrant 

life. 

I suffered the worst stroke the doctors had seen; if I didn't die in the next 30 minutes, which they expected, I would never walk again, talk again, use my left side again or make any decisions again the doctors thought.  "He's lost 45% of his brain cells," was the collected expert opinion of my doctors. 

I had to create my own vision for my life which was indeed, to live, walk again, talk again and use my left side again.  Since then, with years of therapies, a strong faith, determination and loving support from friends and family, I have indeed fulfilled my vision.  I have written and published ten books, traveled to more than 40 countries and spoken on 25 cruises with Norwegian Cruise Lines as their Enlightenment and Destination speaker.  I have served as Keynote Speaker at numerous conferences on stroke for The American Heart and The American Stroke Associations across the country. 


I now live a full life of writing, consulting, painting and public speaking on numerous subjects.


I also am privileged to counsel stroke survivors and their families across the country by telephone and with personal visits.  I try to set an example and inspire those who have suffered this tragic and debilitating illness. I now play golf, right handed only, I paint and have shown my art work at many exhibitions and one man shows.


The original "A Stroke of Genius" has now been Revised and Updates and is now available. 
It recounts that Sandy Simon suffered a massive cerebral hemorrhage in the prime of his life and was declared 100% disabled for life.  He later devoted himself to writing and painting, initially as therapy, but through his creative talent Sandy has produced fascinating books and striking pictures that have helped in making a miraculously recovery.

The new edition has been extended and has additional information and informative photographs More importantly, the book has become a guide for other victims and their families. It will captivate you with its emotional sensitivity and humorous personal anecdotes. 

Sandy Simon is offering the original edition ad a special price of $9.99 when two or more are purchased for distrubution.


Sandy has been invited as keynote speaker at numerous regional conferences on stroke held by the American Heart Association. His speaking engagements have taken him across the country.

"Sandy Simon's book, A STROKE OF GENIUS, should be required reading for everyone.  As a neurologist specializing in acute stroke treatment, I urge all doctors, neurologists, therapists and caregivers to READ THIS BOOK!" 
Dr Mark I. Brody, Medical Director, 
Bethesda Memorial Hospital Stroke Program.
"This is an account of a very real personal journey that starts with a disaster and leads through paths of paralysis and pain to a good measure of healing and new insight into the nature of the human condition. The story is about the power, humor and support of other human beings. There are valuable lessons here for each of us”  
Dr. Peter Doherty – Nobel Laureate.  
St. Jude Children’s Research Hospital Memphis TN .

"This book is a real winner. Honest in a light-reading way"
Jack Canfield, Author of Chicken Soup for the Soul.

STROKE - IMPORTANT INFORMATION AND FAQs

Content:-
  • Stroke Symptoms.
  • What Can YOU Do? (About Stroke)
  • A STROKE FACT SUMMARY
  • MY THERAPIES AFTER STROKE.
  • Frequently Asked Questions About Stroke

Stroke Symptoms.

Sometimes symptoms of a stroke are difficult to identify.  The stroke victim may suffer brain damage when people nearby fail to recognize the symptoms.  Now doctors say any bystander is able to recognize a stroke by asking three simple questions.
  • Ask the individual to smile.
  • Ask him or her to raise both arms.
  • Ask the person to speak a simple sentence

If he or she has trouble with any of these tasks, call 911 immediately and describe the symptoms to the dispatcher.  After discovering that a group of non-medical volunteers could identify facial weakness and speech problems, researchers continue to urge the general public to learn the three questions.  - The American Heart Association.

What Can YOU Do? (About Stroke)

CALL 911. STROKE IS AN EMERGENCY!
Learn the warning signals of stroke.
Learn and adopt the changes you should make in your lifestyle. (diet, exercise, stop smoking, lower stress).
Get medical checkups at least once per year.
Find out which local hospital is a "stroke center".  (No more than one hour driving time away). 
Call them and ask these questions:
Does your Emergency Room have a standard protocol in place for quickly determining if a patient is suffering a stroke? (Only 18% of America's ERs do, says the NSA (National Stroke Association).
Does your hospital have a neurosurgeon or neurologist trained to administer tPA quickly?  Is he or she on call 24/7?  (Only 67% of America's hospitals do, says the NSA).
How many times in the past year has the hospital successfully administered tPA?
Place a notice on your refrigerator (or on inside of your front door)
  • Stating: "EMT: IF IT'S A STROKE, TAKE ME TO THE (Name here of the chosen hospital as determined by your above research) HOSPITAL".

A STROKE FACT SUMMARY.

Facts most people do not know according to the NSA (National Stroke Association):
  • Stroke kills twice as many women as does breast cancer.
  • Stroke is the number three killer in America; number two Worldwide.
  • Stroke is the number one cause of adult disability.
  • The average amount of time it takes for Americans to get to the hospital is twelve hours, yet the best medication for ischemic (clot) stroke, tPA, which in most cases eliminates or significantly reduces impairment, must be administered within three (3) hours.
  • 66% of all hospitals have no stroke protocol - Does yours?
  • 82% of hospitals lack procedures to rapidly identify stroke sufferers - Does yours?
  • 750,000 people will suffer a severe stroke this year, with the number growing with the aging of the "Baby Boomers".
  • 4,000,000 Americans live with stroke.  Doctors will tell you, with good statistical basis, that 90% of improvement after stroke will occur in the first year.  We say that need not be so, and say quite the contrary, it can be improved over many years. 
  • 80% of strokes can be avoided or mitigated.

MY THERAPIES AFTER STROKE.

The following are among the 24 therapies I have undertaken since my stroke.  Most have been very helpful and advanced my capabilities to a new life, nearly as physically and emotionally equal to my pre-stroke conditions.  In some ways, my lifestyle, sense of priorities, emotional and spiritual qualities are more advanced than before.
Physical Therapy (PT):
PT has been a Godsend in helping me return to sitting, standing, walking, playing golf, and driving on my own. Fortunately, my Physical Therapist is tops in her field.  She keeps finding innovative ways to keep me improving.  My "out-patient therapy" at the hospital was ineffective at best until I found a local clinic.  I still undergo PT once per week, with my therapist, Rebecca, even today.
Occupational Therapy (OT): 
Began almost immediately in the rehabilitation hospital.  My
OT therapist vigorously manipulated my right shoulder to relieve the severe pain I suffered every morning.  Three months plus five months of out-patient OT helped me relearn my ADLs (Activities of Daily Living); brushing my teeth, standing, using my arm properly.  My left arm did not move at all for over five months.  I was told, "If it doesn't move for three months, it never will"  They were wrong!  The therapists were told in front of me, "Teach him how to live with just his right arm".  I responded, "No, teach me how to use my left arm.  After five months of out-patient OT I was discharged with, "That's all we can do for you".  (Was it possibly because the insurance payments stopped?  They never told me).  We accomplished almost nothing.  Today, after several successful innovative therapies like Bio-Feedback, constraint therapy and muscle building exercises, my left arm and hand are able to perform many activities. (see Constraint Therapy below).

Recreational Therapy (RT):
Is a program in which a local hospital joined with the golfing pro, at the Palm Beach County public golf course, for a series of Saturday morning sessions.  A dozen of us who had survived stroke, brain and spinal injuries, and other disabling illnesses were taught compensations.  I was taught to play golf with my right arm only, from putting and chipping to driving.  It is such a wonderful experience to be outside on a golf course, with others, and learning how to return to an activity I enjoyed so much before my stroke.  RT is a vital therapy that helps us rejoin society and to reconnect with the world. (see page 41 of my book - A Stroke of Genius).  Golf is just one such activity.  Swimming, walking, art, and music also are very helpful.

Constraint Therapy (CIMT):
A two week research program of the Veterans Administration was remarkably significant for me.  At first, after four minutes each (on video tape) of attempting to pick up a marble, a pencil, a paper clip and a dime, I was unsuccessful.  Twisting and turning and perspiring, I couldn't pick up anything with my left thumb and forefinger.  Most of my brain cells serving my left arm and hand were killed or severely injured so all new pathways had to be created.
After ten days of extremely frustrating intensive constraint therapy, whereby my strong hand was restricted in a very large pillow rendering it useless, I was able to pick up 24 marbles in one minute, pick up the dime, the pencil and paperclip in the same time as I did with my right hand.  It was an extraordinary result.  Since then, with practice, practice, practice, my weak left side has been able to perform more, and better.  I highly recommend constraint therapy or even what is called Modified Constraint Therapy as provided at the University of Cincinnati School of Medicine under the direction of Dr. Steven Page. It is less expensive, and much of the therapy is done under their supervision, but in the comfort of one's home.

Bio-Feedback Therapy:
This is an excellent use of hi-tech, computer-driven, instant feedback of your muscle groups responding to the use of those muscles.  At the beginning of my treatments, I suffered significant "spasticity" because my brain was calling on opposing muscle groups to perform every task.  As an example, to lift my arm, my bicep muscles should do the work, but since they were weak, my brain called on my counter-triceps, my shoulder, even my stomach muscles.  So I would become exhausted simply trying to press an elevator button.  We found that my "extensor" muscles were receiving only 3% of normal signals to the brain.  As a result, they couldn't perform even the simplest of tasks.  After twice weekly sessions with Dr. Bernard Brucker, PhD. of the university of Miami, we were able to increase my "signals received" to 29%, a phenomenal improvement. My use is so much better now, and we are working to increase beyond 29%

Dolphin Therapy:
With Dr. David Nathanson and his highly trained and licensed therapists in Key Largo, Florida, I found that the dolphins swimming by me as I performed "weight bearing" exercises on a floating platform virtually compelled me to reach further than I would have otherwise just to touch the magnificent "smiling" dolphin.   The friendly trained dolphins swam by each time just a little further away from my reach than the time before. It's an extraordinary experience, and one I recommend.
Speech Therapy:
While I did not experience severe aphasia (An inability to speak), I suffered from dysarthia (A speech disorder).  My tongue, throat and mouth muscles were not responding.  My mouth drooped and my tongue veered to the left because the left side of my tongue was not responding.  It also severely impacted my ability to swallow.  All liquids, even water, had to be "thickened".  Three months of speech and swallowing therapy, thousands of repetitions exercising my tongue and mouth muscles later, I speak now as well as I did before the stroke.  My swallowing ability is nearly normal.
Electrical Therapy:
Ice and stiff brush therapy: seeking to get a return of surface sensitivity to my left side helped a bit, but not enough.
Hyperbaric Therapy:
This process of submitting to higher than normal atmospheric pressure in a chamber of pure oxygen (two atmospheres) is a means of getting more oxygen into one's blood stream faster and thus to the brain.  It is especially effective for burn victims, diabetics and for divers with too much nitrogen in their blood.  It promotes accelerated healing and energizing of the brain cells.  While there is said to be "no significant studies proving it's worth to stroke sufferers", there are a growing number who believe it is very helpful, and perhaps it is in many cases.  
I understand Medicare now covers this cost.

Acupuncture:
Always looking for new solutions, I am now undergoing intensive acupuncture therapy.  More on this at a later date.

Hippo Therapy: 
Hippo is Greek for Horse.  
This therapy includes riding a horse essentially bareback (for adults) on only a blanket working within a riding ring, supervised by a trained physical therapist, (for me, Rebecca, again).  The horse is led by a trained guide and a second walker walks alongside.  It is quite safe, as this therapy is performed, at least locally for me, at Horses For The Handicapped in Pompano Beach, Florida. I continue with this therapy even today.
I have found enormous improvement not only in myself but in others who undertake this weekly session.  There is a remarkable relationship between the horse and the rider both in similar strides, but also the rhythms of the horse's movements.  It helps bring the recovering stroke survivor's walk to new heights of hip, stomach muscles, leg movements into harmony.  For me, it has been another "Godsend", helping me walk smoother, more effortlessly, less tiring and more aesthetic.  My ability to walk longer distances has also improved dramatically.  Even my left arm swing has returned to normal.  This is also a proven therapy for children with autism, cerebral palsy, spinal injuries, MS, and the like.

 

Frequently Asked Questions About Stroke


1.     What is a stroke?
A stroke is a sudden loss of oxygen into the brain.  
80% are caused by blockage or obstruction of blood vessels. 
750,000 Americans suffer severe stroke each year.

2.     What are its symptoms?
Sudden unusual headaches, sudden numbness on one side, slurred speech, double vision, sometimes nausea.

3.     What should I do?
Call 911 immediately!  Stroke is an emergency.  
Insist on being taken to a hospital known to be a stroke center.  There is a brief 3 hour window to receive the only FDA approved medication, tPA.  Time is critical. Do not delay. 
See "What can YOU do about Stroke" above to help select a hospital".

4.     What is a mini stroke?
Over 1,000,000 Americans suffer a "mini stroke" each year.  Called a TIA (Transient Ischemic Attack), it can last only minutes or a month.  It is a temporary blockage of blood to the brain.  TIAs are strong predictors of strokes.

5.     What should I do?
See your doctor immediately.  There is a problem that could likely lead to a severe stroke.  This is an urgent wake-up call.  Intervention is called for.

6.     How does a stroke impact one's life?
Stroke is the #1 cause of disability in America.  To many, the emotional damage is even greater than the severe physical impairments.  Stroke requires long term rehabilitation, and can cause most to be unable to return to work a "normal day" for some time.  Depending on severity and location of the stroke, the impact can cause speech problems, physical disabilities, even memory issues.

7.     How long does it take to "come back" after a stroke? If ever?
Since World War II, common belief in the medical community was that 90% of improvement will occur within 6-12 months.  Thankfully, that incorrect attitude is changing.  Many recent studies (University of Alabama-Birmingham, Wisconsin University, UCLA) indicate improvements can continue beyond even twenty years.  However, that 6-12 months, self-fulfilling prophecy is the basis Medicare and insurance companies use to stop therapy payments at that time.  Something that must change.  My advice? - Hire an attorney to convince the insurance company to continue coverage as long as improvement continues, you have a strong argument.  Make certain your therapists maintain regular measurements of your improvements.  As long as you continue to improve, you have a good argument for more and extended coverage.

8.     What does it take to overcome a stroke's impairment?
I found the best path of healing is faith, belief, determination, loving support, and practice, practice, practice.  You must train your healthy brain cells to take on the tasks the dead or severely injured cells can no longer perform.  This is a process called neuro-plasticity or activity-induced plasticity.  It works.  It requires determination and practice, practice, practice.  This is a marathon, not a sprint.

9.     Why is stroke such a big deal?
Stroke will cost an estimated $54 Billion this year in America alone in direct costs for the more than 4.000,000 Americans who live with stroke, and costs for the 750,000 who will suffer a severe stroke.  Loss of jobs, productivity and impact on businesses, colleagues, friends and family increase the costs even further.

10.    Is stroke like a heart attack?
In many ways, the causes of either can be similar.  They both share identical risk factors including high blood pressure, excess cholesterol, and diabetes.  Heart attack is also very serious, can be caused by blockage of blood vessels, but does not usually cause long term paralysis like stroke.  It does significantly alter one's lifestyle a great deal, but not in visible ways.  Both require a renewed lifestyle, exercise and therapy.

11.    How can I prevent having a stroke?
80% of strokes (ischemic) are caused by a "poor life style", involving fatty diet, lack of exercise, avoiding "listening to your body's signals", and the like.  Have at least an annual medical checkup; Stay away from stressful activities; Keep your cholesterol under 200; and Blood pressure under 150;  Exercise three times per week; Eat wisely.

12.    What is new research finding?
tPA (tissue Plasminogen Activator) is the only FDA approved medication for stroke.  It must be administered within 3 hours from the onset of symptoms.  Thus only a very small percentage, 1-3% actually receive the drug.  After three hours, side-effects can be life threatening.  Perhaps due to the aging Baby Boomer population, much more research is revealing helpful medications that could be administered up to nine hours after onset.  Additionally, research into the use of Vampire bat saliva which stops blood clotting appears promising.  New techniques in clot removal and other possibilities are on the horizon.

Note: On all medical issues consult your physician.  The above are results of extensive research and personal experience.  They may not all relate to every individual case.