Stroke: A Love Story
We write this so that we may share with you our personal journey of stroke and recovery. We understand that you are given much advice and recommendations from many people and we appreciate that everyone is unique in their type of stroke, medical history, personality and goals. Mark and I intend that his story may be inspiring and insightful for you and for your loved one.
In May of 2006, we were living the life of our dreams. Mark's business was exponentially growing, we were happy and thriving in our work, we were healthy and in love. Without warning, our world turned upside down - Mark was experiencing a massive ischemic stroke. He had been at a breakfast business meeting when he began to have blurring vision and trouble writing. Soon after in the emergency department and even after the tPA treatment, he was losing speech and all movement on the right side of his body. And then it got worse.
At first the reason was unknown; later that day they found the cause. It was an internal carotid (artery in the neck) dissection (separation and ballooning in of the artery wall) that may have been the result of a car accident months before. This artery supplies 2/3's of the left side of his brain and the swelling that resulted from the lack of blood flow was now compressing his brain on the right (midline shift) and the brainstem into his spinal canal (herniation).
No matter how optimistic our thoughts, how positive our emotions, how strong our beliefs and how focused our will to live and to be well, we faced ever-challenging situations, even with some of the best medical care in the country.
He needed: a naso-gastric tube to stop him from choking on his own saliva and then for his only nutrition; days on the ventilator when he no longer could breathe on his own; neuro-surgery to remove part of his skull to prevent him from dying. He had infections and then reactions to the antibiotics to fight the infection; seizures brought on by too much activity, blood clots in both legs from too little activity; another blood clot in a vein back to his heart and one to his lung (pulmonary embolism); blood pressure control problems; high fevers of unknown origin, blood transfusions, pic-lines, catheters, inter-cranial pressure monitors and Greenfield filters.
For many the result would have been bleak. Mark was unable to speak, to read or to tell time. He could not feel his right side, see his right side or move his right side. He was dependent and incontinent. As one neurologist put it, "Mark had a catastrophic stroke and was disastrously ill".
Mark was limited but not incapacitated. When he was on the ventilator, he could communicate with his eye (his left was swollen shut) and facial expression. When he could not move his body, he could move his thoughts. When his thoughts were "jumbled" he maintained a empowering vision. We sustained beautiful surroundings by our choice in music, smells, touch and energy. We felt moments of fear, confusion, frustration and grief - but we did not stay stuck in those emotions.
We have utilized the tools of modern medicine, holistic healing and conscious control, of mirror neuron theory, synesthesia movement re-education and language techniques, nutrition to reduce inflammation, supplements to stimulate stem cells and exercise for neurogenesis. We put to use what we knew and learned to navigate our way, building a path as we walked it.
Today Mark amazes doctors with his abilities and inspires those around him with his determination and positivity. Today he walks independently, he speaks quite fluently and is reading again. He works every day, makes his own decisions and plans. He is training for a body building competition and preparing to be back on stage speaking again soon. He will tell you himself: he is "the same person, only better". Did the stroke change him? It changed his body; it was the experience that enhanced his heart and soul.
We have walked the path between science and possibility - between what is known and still unknown. With Mark's background as a neuroscientist and creator of Cognitive Neurophysics and NeuroPrint and Monica's 18+ years experience as a physical therapist and study in neuroscience and mind-body interventions, we understand brain structure and function and yet believe that there is so much more to learn about neurogenesis, enhancing recovery and regaining abilities in order to recreate a life. We believe we are just beginning to unveil what we are capable of doing.
Mark's continued progress is due to many people, things as well as his own work - some of which we would like to share with you now. What follows is what we did to survive and to thrive.
During the most uncertain times, times when the doctors cautioned us that Mark may not come off the ventilator, survive the week or become well enough to go home, we held strong to our purpose. When we faced the medical bills and the uncertainty of where to live, we kept to our mission. As the road ahead was obscured, we maintained a course in the direction of our destiny. Mark says: "The essence of who you are lives on, it is just the form that changes."
Every day we build our vision to make it bigger, brighter and more alive. Monica would tell the doctors, nurses and therapists - especially in front of Mark - "If anyone can get well, Mark will" and then whisper in his ear: "I believe in you", "The world needs you" and "You will be a testimony to your own life's work". There were always signs that he heard and he knew this to be true. We live our purpose, on purpose.
In the face of any adversity, the value of knowing who you are and your purpose in this world is that it fuels your beliefs, capabilities and thus your outcomes. That identity comes under fire when something so major as a stroke strikes, but it is also an opportunity to grow. Stay courageous and hopeful. Courage is the "golden mean" between the extremes of fear and confidence; between acceptance and risk taking. Hope is contagious. Never give up hope and always give hope away.
Throughout this experience, we affirm that there is a greater purpose, a divine plan in all of this, even when you are unsure of what that is. We sense we are both living this higher purpose a little more each day and that we will continue to see it revealed. Hold the conviction that there will be the highest good. Have faith in yourself and for what you may not yet see, hear or feel.
Today we continue to set goals based upon what we envision as our new life course. It is a similar, yet expanded purpose as before the stroke, it is just a different path. Set a vision for your future and keep it bright, big and in focus.
We all value our basic needs of food, water, comfort (temperature and bathroom), sleep and safety. Frequently those needs, though basically met during a hospitalization, are lacking or dictated to us in some way. And because he may be dependent for those needs and unable to verbally communicate them, it is all the more important to be attentive to the signals.
Values have that unique ability to move us forward in life especially in getting well again. In working with thousands of people, we appreciate how each person has their own "values target". How a person prioritizes their values, defines each value and knows what satisfies or violates each of the definitions is deeply personal. When you know someone so well, you may intuitively know what is most important to them. We are fortunate that Monica knew explicitly what Mark always had valued most. The challenge was getting his values met in a new and ever changing situation.
While still in the ICU, Mark was off the ventilator and had fevers of unknown origin (FUO). Ice packs were placed near his armpits, abdomen and groin in order to lower his core temperature. Alert, annoyed and defiant, he would take an ice pac with his left hand, extend his arm out over the bed rail, look through the wall of glass separating him from the nurse's station, glare directly at the nurse (who was asking for me to intervene) and flamboyantly open his hand and drop the ice pac onto the floor. He repeated this until every last one he could reach sat in a pile next to the bed. He looked so proud of himself, I had to laugh.
Remembering the story of his unhappy experience as a child with fevers and ice baths, his belief that temperature is correlated with increase immune response and figuring that he had not be given a say in the matter, I went into his room assuring him I knew what and why he was doing. I expressed understanding that his values for freedom and power were not being met. We "talked" and I asked him if he would be willing to cooperate for a while. He agreed with a look and a nod. Soon after, his temperatures were more normal.
One morning about 5 weeks after the stroke, Mark was completely devoid of freedom and control of his basic human needs. Because of the seizures, a well-intending nursing aide had put padding all along his left ("good") side covering the bed controls, lights and call button. He had been unable to control the bed to sit up during the night to use the urinal or change position and he couldn't call for help. He was alone and he couldn't move; he obviously hadn't slept or eaten and by the look on his face, he was not a happy camper. Both he and his sheets were a hot mess.
First things first. Before there was I love you's and kisses, we took care of the basic needs and things that allowed him back some freedom and power. We made sure that he would feel safe that the padding would not put on the bed again blocking the controls. Then we cuddled up together for a catnap before we worked on his therapy.
We encourage a balance between caring for and doting over: he needed his food cut up but not arranged on the plate for him; his face, teeth and body needed to be cleaned tenderly but not babied; he needed to be safe by wearing the helmet to protect his head but not smothered by repeated instructions of on how to put it on each time. He needed his options explained more slowly and with visuals or gestures, with a respectful tone of voice and direct eye contact, with the chance to be asked if he understood, needed more information or time and if he consented. Most importantly, he needs to be loved and to express love back.
Love is an emotion and we also understand love to be a value. It can be helpful to understand another's "love languages" however that language may need a little re-interpretation following a stroke. Words of affirmation/praise to celebrate each and every little success; small purposeful gifts; enjoying quality time; acts of service and of course, physical affection, at times romantic, letting him know he is desirable, and other times a sign of reassuring comfort. We loved unconditionally, with a shared purpose, compassionately and with passion to be together again.
Sometimes it may difficult to know what to do or say. Should you say "everything is gonna be ok" or should you talk about what's happening? Should you sit and hold his hand or try to make him move or to talk? Yes and yes. And, to allow him to do something for you.
A precious few times when he was still in ICU and visitors were required to be gowned and gloved, he would caress my thumb with his or squeeze 3 times meaning "I love you"- it was our private sign language from before his stroke and one of the ways I knew he was still "in there". Later times, I would rest my head on his chest while he stroked my hair. Sometimes he would grab me around my waist and pull me close to him for a kiss. Today Mark values the little things that are proof to him that he is still the only man for me and that I am still the girl of his dreams.
One belief does not make a person well; it is a system of beliefs that work and work together without conflict. We believe that beliefs both drive and are driven by experience. Affirmations and beliefs can sound good, but must be in alignment with existing unconscious programs or "wired in" to work before you need them. This is why even the best beliefs don't work for all people all the time no matter how much we want them to.
Along with the beliefs we had already, we were offered quite a few new ones. Some we found empowering and immersed ourselves in them, some were good and we used them sparingly and others we tossed like yesterday's garbage.
Here's examples of beliefs that we kept: 1) "Love heals" reinforced by feeling nurtured and whole. 2) "Laughter is good medicine" as evidenced by feeling renewed and revitalized. 3) "The body can heal itself/build new pathways" creates hope and hopefully action even if we are still learning how make it happen better. It also suggests that healing comes in "cans" and not the "can-nots".
Here's our examples to burn, tear up, get rid of and replace immediately: 1) "Most of the gains will be in the first 6 to 12 months" as this can lead to let downs and giving up after that time frame is up - and it isn't always true. 2) "He's very fragile" as this could lead to fear, anxiety and avoidance behaviors. 3) "You just have to believe/pray/want it enough" was too one-dimensional and usually too passive even though we did believe, pray and want it.
Our advice is to be very conscious of the viruses you let in and those you pass along. Consider what would happen if a belief replicated in the mind. If it doesn't empower you, throw it out.
THOUGHTS, EMOTIONS and BEHAVIORS
If our results - getting well and being healthy - are due to our responses rather than to the events themselves, then what do the best responses look like? Could we see which thoughts, emotions and actions to avoid like land-mines and which ones to access as healing landscapes? And how do we help the one we love to navigate the maze?
We want to share with you our biggest secret. Rather than a particular thought, or solitary emotion or few behaviors, we see the connections and our ability to change the connections between the thoughts, emotions and behaviors, as our greatest asset to recovery and healing. We call unique patterns in our connections "strategies" and those grouped together "landscapes".
Granted Mark went into his experience "pre-wired" for success. He has always focused on the solution and not the problem. He was rarely 'angry' or 'frustrated' and if he was, he transitioned into 'curiosity' to find answers. I never saw him 'depressed' before the stroke and have never seen him 'sad' since. His slogan is: "consciousness has a purpose...it is a window for programming the brain" and to program in advance of need.
When the combination of dealing with the stroke, the medical challenges, the concern about his business at a standstill, difficulties with the lack of insurance and us being across country from home, Mark experience a little 'anxiety'. The problem was that his pre-wired strategy to find solutions would not work given this particular situation of being immobile and unable to speak.
We felt it was important to be in the state of extreme calm, - a place of 'equanimity'. Telling him that he was "in the best hospital", "getting the best care", that "they are doing all the right things" and "the outside world was being taken care of and he just needs to focus on his 'inside' world" repeatedly created and reinforced a change of state that we could see with his breathing and relaxation of his body tension. How important it was for him and his "internal pharmacy" to go into surgeries or procedures feeling this place of 'calm'.
We use laughter - a lot. Laughter is a behavior we access inside many emotions. We laugh to break emotional states and to re-energize ourselves. We laugh from 'joy' celebrating small successes after much 'determination'. We laugh from 'silliness' to ease the tension from difficult family dynamics. We still laugh in 'delight' remembering situations like the ice pac fiasco, when Monica stumbles over her words and even over the memory of when Mark was first out of the hospital in the bathroom and Monica decided to do a few triceps dips using the sink countertop. Half-way through, Mark says "Nice foreceps!"
As mentioned earlier, 'hope', as expressed through words, with a tone of voice and gentle touch. It is important to give, especially to use as a transition state to and from other emotions. From 'hope', we can become inspired and have new insights, get 'motivated' and get moving or become 'relaxed' and heal. Negativity was not allowed. If someone spoke fearfully, with criticism or from a place of pity, it was immediately taken "outside".
There was a time we needed to wire in a state of 'peacefulness' to deal with a totally new experience of 'helpless'. When Mark was still on the ventilator being suctioned for secretions, he would need to cough. Often he struggled against the ventilator which was scheduled to make him inhale, the bells beeping and him gasping. We told him that it was normal and to "go with it". Next, we practiced 'peaceful' by remembering a time he felt peaceful and to hold the state by seeing, hearing and feeling what he felt in that memory. I asked him to remember another time and we repeated this for a few minutes. We then practiced making a new pathway from the feeling of needing to cough and the ventilator wanting him to inhale to immediately feeling 'peaceful' by accessing one of his memories.
Over the next few days, when Mark needed to cough, you could see him automatically transition to 'peaceful' and then physically relax. He was then able to quickly wean from the ventilator without 'anxiety' and with feedback.
Mark's emotions after the stroke are very similar to the patterns he had before the stroke. He continues to be very 'motivated', 'determined', 'driven', 'curious', 'positive', 'confident' and 'focused'. When Mark was preparing to walk again, I bought him a new pair of sneakers, size 13. When I brought them in to him, he kept asking "Factor 1,3?" and would look down at the shoes. For the next few minutes, I did not have a clue what he meant. He was double-checking that I got the right size for him. "Yes," I sighed, "they are a size 13". As many authors talk about right brain vs left brain personalities, I tease Mark that he must have got 2 left brains.
As Mark's creation of the NeuroPrint work reveals, each person is unique in their connectivity as well as the content in their thoughts, emotions, behaviors and access to each. If you look to your own experiences, people can get stuck in an unscalable well of 'depression' or remain 'determined' no matter what; some people are slow to anger and others easily frustrated. Behaviors vary depending on the emotion one feels: laughing when delighted is not the same laugh as when embarrassed and typically does not occur when feeling hopeless. Behaviors are bound by the emotion that is connected to it.
We stayed in positive landscapes by spending time in nature, being with good friends, counting our blessings and staying connected to empowering emotions containing naturally occurring goal-directed or healing behaviors. If you keep yourself in healthy and positive landscapes, you are healthier, better at dealing with the challenges and it shows as you interact with others, tending to make them feel those same emotions too. Help him remember positive past situations or break state with laughter so he can better access the landscapes of healing.
People have the tendency to underestimate or overemphasize the effect that one's environment has on healing and well-being. To create an environment for healing, consider everything from how you look and sound walking into the room to what stays in the room when you leave.
Sound: Mark has always enjoyed music. From classical to classic rock, from opera to pop, from instrumental to world music, music was a major part of life. After his stroke, Mark found most music overstimulating - "too many notes" - and preferred a style that was very soothing and simple in melody. A Healing Touch therapist gave us a Reiki Healing Music CD that we kept on continuous play; Mark still loves it. We also enjoyed listening to "brain wave" music that had sounds of nature (ocean, streams, rainforest). It was meant to create alert, sleep or relaxed brain states and we liked that it brought nature indoors when we couldn't get outside. Music therapy was utilized to assist in rhythm with learning to walk again and also for singing along to help with his speech. Today Mark dances, serenades and has even begun to play his guitars again.
Sight: We created a "wall of encouragement" with of all the cards and letters sent to him so that every time he opened his eyes he would "see" the support and blessings. Each time Mark was moved to a new room, the wall of encouragement was taken down and built back up again. We used photos of people when speaking of them (phones are great for this now) so that he may better visualize the person. We kept his book up for him and others to see and be reminded of his work. Mark has always been very organized, believing that the outside reflected and affected the inside (mind) so we are sure to keep things organized in order to help his memory skills. He has had a technique that he used to train himself to have a photographic memory so even when he wasn't able to verbalize something, he could go to the external "location" to find even a remote passage.
Smell/taste: When he was on the ventilator in ICU we kept scent to a minimum especially perfumes. Once he was tolerant of scent, we were open to various essential oils including Ayurvedic balancing oils that also helped his skin as well as chakra balancing oils. Mark's says his sense of smell is heightened. Some smells he says are nauseating so we are attentive to this. We enjoy the smell of roses, certain candles and of course, great food. Mark has always been a connoisseur of food; he used to say he could taste a menu just by reading it. Some of the medications seemed to alter his taste sensitivity, causing a repulsion for foods he used to love. We still eat unprocessed and mostly organic foods with lots of favors from spices that also are touted as having medicinal and healing effects. Examples include garlic or turmeric for anti-inflammatory effects and cinnamon for memory.
Touch: Communicating through touch can be powerful or noxious. People experience different changes in sensation with a stroke. In times of rest, we'd touch more of the normal side, crossing over to the affected side. In "therapy" times we focused touch mainly to his involved side. For Mark, he describes some tapping and stroking on his right as "caustic". We felt it was necessary to get the communication going even if it was uncomfortable. We remember when Mark began moving his leg after weeks of a daily ritual of tapping, pressure and visualization with passive movement. As he has "worked through" this, it allowed him use that he may have otherwise avoided.
INTEGRATING FOR RE-GENERATING
Vision, higher purpose, identity, values, empowering beliefs, positive mental landscapes within a nurturing environment come together to rejuvenate and recreate. We utilize Donald Webb's neuroscience theory of repetition: nerves that fire together, wire together; nerves that fire together frequently, create stable pathways; stable pathways become energy efficient (more automatic). Practice does not make perfect;practice makes permanent, better yet: more consistent practice makes more permanent performance - for the better or the worse.
Mark reports that everything he had to relearn was "hard work" but "I never gave up. I had to do it, it was not an option". It is a ongoing balance between being challenged and yet successful in order to progress and improve carryover.
Regaining movement: Weight bearing has been found to be important to stimulate the nerves and muscles after stroke; it can both improve muscle tone where there's none and to help lessen it if there's spasticity. When Mark was bed-ridden, Monica would simulate weight bearing in his limb by applying pressure through his foot or into his hand. When he was able to sit on the edge of bed, Mark's hand was placed on the bed with support to the elbow to stay straight and later on when he stood at a counter to brush his teeth or work on reaching. This helped to prevent shoulder subluxation, assist in balance and stimulate the arm muscles. Every time Mark moved from sitting to standing, we positioned his knee in alignment with his hip and foot and then placed pressure through his knee so to increase use of that side. Within a few months of doing this consistently, he began to do it independently and now can perform a leg press with hundreds of pounds.
Early on, a therapist asked Mark to show her if he could reach his left hand over to his right arm. As she demonstrated facing him using her left hand to her right arm it looked as if she was asking Mark to move his right hand to his left arm. He shook his head and shrugged his shoulders to say he couldn't do it. She thought he didn't understand what to do. I suggested we use ideas from mirror neuron theory (a book Mark had been reading before his stroke and now I was reading to him). When she gave the same request switching her demonstration moving her right arm to her left, Mark's mirror neurons fired and he demonstrated what she wanted. We kept use of this technique for relearning to dress, eat, bathe and other forgotten patterns.
Because of the lost ability for light touch, movement and position sense, he struggled to feel any movement on that side whether he was moving or another person or machine moved for him. We incorporated synesthesia (watching, feeling and moving) along with visualization of a specific function. Later we used more visual feedback, biofeedback including taping, computerized balance machines and Pilates equipment as well as functional electrical stimulation especially the Bioness. We experimented with hippo-therapy (specialized horse ridding), gyrotonics, acupuncture, cranio-sacral therapy along with regular therapeutic techniques with therapists trained in Neuro-Developmental Treatment and Neuro-IFRAH.
Mark insists that the most important thing he does is working out at the gym. As he lost so much muscle strength and general endurance, restoring normal function was even more difficult. Stroke research has shown progressive strengthening to be helpful to improve function and does not worsen spasticity. New research at the Brain Rehab Research Center in Gainesville Florida is exploring how exercise actually stimulates new nerve cell growth. In addition to the improvements in body, exercising requires memory, planning and decision making and is also great for social interaction.
Restoring communication: We've approached communication as if learning a new language and we've learned so many techniques from speech therapists. An important concept to understand is that repetition is easier than voluntary talking, which is easier than responding which is easier still than making conversation. It is still necessary to remind others that Mark needs time to say a word or phrase on his own and even more time if Mark was asked a question. Also he speaks better on Skype or FaceTime rather than on the phone itself due to the visual component of non-verbal communication.
We started retraining speech skills as soon as he was off the ventilator. Mark admits "I was like an infant". We began with sounds: "sh", "mm", "ee" and then to meaningful words "Hi" or phrases: "Hi love". We then moved to simple sentences using gestures or holding physical objects so he could answer with a nod or head shake and then having him imitate "yes" or "no" or the name of the object.
By the time Mark was on the rehab unit and he'd press the nurse's button for something he wanted, the unit secretary would sing out over the speaker "Can I help youuu?" Mark would sing back to her "Can I help youuuu?" It was his way to communicate he wanted help without being able to express it directly.
When we didn't know what he wanted, we would start by asking questions that relate to a general category (is it a food or drink?) or by function (are you hungry or thirsty?). Then we could move to questions about the characteristics (is it green or yellow?). At times when I knew what he wanted, I would have him imitate me saying the word ("lime").
If he had trouble saying the word we would then make the sound of the first letter of the word ("llll"), and if needed, the first sound or syllable ("lie") before giving him the whole word ("lime"). Doing this first in a quiet and secure environment and then transferring this to more challenging situations like ordering in a restaurant, first with help and then without ("ice tea with lime"), takes time, repetition and patience. Today Mark speaks for himself and orders exactly what and how he wants.
We followed the concept that the brain needs to hear more speech before speaking. Monica would read to him a little more each day for months, starting with a paragraph, then a page and then a chapter. For Mark, one of the greatest inventions was the Kindle e-reader specifically books enabled with text-to-speech. Marks chooses the book genre and content difficulty, can increase font size for better seeing and then follows along with the text-to speech set at different speeds.
Mark is a library regular. He listens to audio-books, especially novels - the classics, fiction and biographies to enhance his visualization and vocabulary. This also took some time to build up to and along the way we made sure to discuss the content or what he liked about that page, then the chapter and now, the whole book. Mark has also learned to read along with the CD and has practiced language with Rosetta Stone and i-Pad therAppy.
Mark had ongoing speech therapy with many thanks to the generosity of the Rehab Center for Children and Adults in Palm Beach, Florida. After year one, we joined an aphasia group called Stroke Of Hope (there are centers through-out the country). He and other stroke victors would meet 4x/week for 2.5 hours each day to work on speaking, writing and reading, as well as counting money, keeping a checkbook, time telling and roman numerals. There they used computer assisted programs, written workbooks and group speech therapy where Mark was a natural as everyone's personal cheerleader and later became a coach to others. We have explored dyslexia programs and brought in a teacher who specializes in teaching the "learning disabled". Three years after the stroke Mark improved his reading ability 3 whole grade levels in just under 6 months time and continues to progress.
Although we have many more stories and lessons to share, we offer you what we believe comprised our pathway for healing and for restoring a fulfilling and meaningful life. There are many choices of where to place your valuable resources of time, money, emotion and energy - may you decide and do what is best for you.
In gratitude and with blessings,
Mark and Monica