Young Stroke Survivor, Harshada Rajani, Shares: "What I learned from Jay Williams, Duke Basketball Legend"

In 2003, NBA player Jay Williams suffered injuries that ended his career on the court and left him seeking a new path in life. He said he wouldn't have gotten through that difficult time without his own "board of advisors"-something he says anyone going through a tough time needs.

One night in late 2003, during my freshman year at Duke University, I remember we were all packed into Cameron Indoor Stadium, cheering wildly as we anxiously awaited the events of the night that would kick-off the highly anticipated basketball season. Duke basketball legend, Jay Williams, was there, just a couple of months after his infamous motorcycle accident that prematurely ended his promising NBA career before it had really even started, and forced him into early retirement at the ripe old age of 21. With the lights down low, he slowly limped out onto center court with the help of crutches, right beneath the rafters that held his jersey — the one that was retired here merely a year before. For the next 10 minutes, all you could hear was deafening levels of crazie shouts and raucous cheers — a level of noise that I never once heard repeated in Cameron during all my six years at Duke. Then, in unison almost, the thousands of Duke fans started hailing him like he was a king, because to us, he was and is royalty. Williams put his head down and started crying. I thought it was just because he was touched by the moment, overwhelmed by the enormous love and support that would make any man emotional. But after 12 years and a few of my own heartbreaks, I see another reason that could have explained his tears. He missed the fans. He missed Coach K court. He missed the basketball.

He missed the “old” Jay Williams.

Shortly after I suffered a massive stroke at age 23, my neuropsychologist explained to me that I was expectedly and inconsolably sad all the time because I was grieving the loss of a life, my life, my pre-stroke life. I too, missed and still miss the old Harshada, so very much. I miss her smile — so infectious and free. I miss her brilliance — unassuming yet respected. I miss her passion for life, her unwavering optimism, and her dedication to her dreams. I miss every single thing about her, from her annoying obsession with speaking in abbreviations to her constant need to straighten her hair, everything. I affectionately refer to her on my Twitter as the original Harshada (the OH). She was as perfect as they come, and it kills me to to see the hollow ghost-like reflection of her in the mirror everyday. But what kills me the most is that she was so ridiculously close to reaching her dream; it was so close, she could almost taste it. She had dedicated her entire life, since she was five years old, to becoming a passionate and caring pediatrician. She spent every free moment in high school and college working with kids — in schools, orphanages, hospitals, etc. — not because she had to, but because she wanted to. Her face would light up, much like people say Williams’s face would when he would dribble and drive to the basket. Both of them had undoubtably found their calling, their niche, their purpose.

Jay Williams went to Duke University on a full athletic scholarship. I went to Duke University on a full academic scholarship. Williams graduated in 2002, leaving behind an unbelievable legacy in his wake. He led his team to win the NCAA Tournament in 2001 and was honored as the National Player of the Year. I graduated in 2007, leaving behind a comparably insignificant legacy in my wake, but a legacy nonetheless. My team of friends and I were inducted into Phi Beta Kappa and I graduated with summa cum laude honors. Williams was drafted No. 2 into the NBA by the Chicago Bulls. I was accepted into the No. 2 medical school (ok, ok, No. 5, but No. 2 would have sounded more ironic). The night of his injury, Hall of Fame Duke basketball coach, Mike Krzyzewski (Coach K), was sitting by his side in his room in the intensive care unit. After my injury, Coach K heard about my story and sent me some stuff (in the middle of basketball season) including his autograph, which is sitting by my side in my room. Williams had a Rottweiler named Duke. I have a Maltese/Shih Tzu named Duke. When people watch Williams play basketball even now with such grace and finesse, they think to themselves one heartbreaking thought, “What could have been…” When I wear my “Duke Med” sweatshirt and look in the mirror, I think to myself one heartbreaking thought, “What could have been…” Basically, I’m the Indian-nerd version of Jay Williams, but that is a story for another day. We were both on the brink of achieving our dreams — his was a huge, national one, mine was a clichéd, personal one — but there are threads of similarity in our struggles. However, what makes us different is that he has stopped “chasing the ghost” of his pre-injury life. I have not.

In his recent interview with Oprah Winfrey last month, he discussed how he had launched a comeback to the NBA in 2006, but realized playing basketball wasn’t fun for him anymore. Williams has dealt with the ugly demons of depression and suicide, and battled the bullies of bitterness and resentment toward his peers, but he has come out on top — resilient, tenacious, and victorious. He realized that his destiny had remained unchanged; he knew that he would still be great, but it would be through another vehicle other than basketball. With love and support, he found another passion, another vehicle, and used his education, credentials and experience to land a job as a sports analyst for ESPN.

Çoach K said in an interview, “Jason (Jay) Williams, the player, died. He died young, that great player, and now, he had to be kind of reborn.” Pardon the melodrama, but I think I need to say it: Harshada Rajani, the budding pediatrician, died. She died young, too young. I haven’t quite fully accepted the finality of that statement. I stillhope and pray that maybe tomorrow, I’ll wake up whole and perfect again. I still fight those demons, bullies, and failing muscles, everyday, believing that if I try hard enough, this will all go away. I stillconsider myself a medical student who is on an extended medical leave; I can’t let go. I still internally cringe every time I hear about another young person becoming a doctor, and so easily and freely living their dreams, MY dreams. But, if I actually fought my way back to medical school one day and my body wasn’t exactly the same as it was before, would it even be fun anymore? Given everything that has happened to me physically and emotionally, is that even my dream anymore, or merely a symbol of the OH that I’ve been chasing?

When I woke up in the ICU, completely paralyzed from head to toe, my mom first said to me five simple words, “YOU are not your body.” It’s taken me six years and an Oprah interview with Jay Williams to finally understand what those words meant. Without a doubt, our bodies are fallible, so vulnerable to the unforgiving wrath of Mother Nature, but we don’t have to be. We, along with our personalities and passions, can be constant, enduring, infallible. We are not our bodies. We are not our health. Our hopes and dreams don’t need to be defined by our health. Every person who has experienced a personal tragedy inevitably has a pre-tragedy and post-tragedy life, with the former seeming so perfect and the latter seeming so complicated. The key is finding a way to reconcile the two, to take a long, hard look inside one’s heart and soul, and figure what truly makes one happy. I haven’t quite figured that out yet, but I hope I’m getting close. I’ll leave you all with a quote from Mahatma Gandhi, one that never really resonated with me until now, and is also, of course, tattooed on Jay Williams: “Strength does not come from physical capacity. It comes from an indomitable will.”

This article was originally published on Huffington Post and is used with permission.

Follow Harshada Rajani on Twitter: www.twitter.com/harshadarajani

Sourcehttp://www.huffingtonpost.com/harshada-rajani/jay-williams_b_6988926.html

Murray Howe, Hockey legend Gordie Howe's son, discusses stem cell therapy and his father's recovery

By way of introduction, I am Murray Howe, hockey legend Gordie Howe’s youngest son. I am married with 4 grown fantastic children and a fantastic spouse. I am blessed beyond measure, and it is my goal to love and serve our heavenly Father through service to others. It is my hope that in sharing with you today, that my blog improves the quality of life for at least one reader or their loved one.

I completed my undergraduate, medical school, and diagnostic radiology training at the University of Michigan Medical Center, where I still return to serve on the admissions committee and provide lectures for radiology residents. I trained an additional year at Henry Ford Hospital in Detroit, focusing on MRI imaging of joints in athletes. I then moved to Toledo, where I have practiced radiology for the past 23 years.

Before I chronicle the events that our family experienced in my father’s recovery, I wish to underscore the concerns of a few skeptics, because the concerns are valid, and I applaud skeptics for caring enough to voice them:

1. We all should exercise caution when seeking out “miracle cures” for our loved ones. 

For the well-being of our wallets as well as our loved ones, it’s important that we learn as much as we can, and weigh the information carefully before proceeding.

2. More research into stem cell therapies is needed.

In fact, based on what I have learned, and personally witnessed, stem cells seem poised to profoundly improve the quality of life for all mankind. It shows promise for a myriad of debilitating neurodegenerative, cardiovascular, and autoimmune disorders including stroke, traumatic brain injury, spinal cord injury, dementias, arthritis, MS, ALS, cerebral palsy, congestive heart failure, heart attack, and diabetes, to name a few.  It would behoove all nations to prioritize the research and development of cellular therapies.

I completely understand the position of skeptics. My father’s response was so miraculous, that I would have found it hard to believe had I not witnessed it firsthand. Researchers and physicians practicing in the U.S. and Canada are currently at a disadvantage with regard to knowledge or expertise in the treatment of patients using adult, donor stem cells. Much of the work in this field has been accomplished in Russia, including the ground-breaking work of Dr. Nikolay Mironov who pioneered the use of protocols using two different types of stem cells, as was used in my father’s treatment. Perhaps the U.S. physician most experienced in treatment at this time is Dr. David Howe, who was fortunate enough to work with Dr. Mironov.

There are currently over 50 registered clinical trials worldwide for investigating stem cell treatment for stroke patients, including a trial at UCSD using Stemedica adult allogenic stem cells. As these trials begin publishing their results over the next few months to years, hopefully this will catalyze even more U.S. and Canadian based trials.  The future looks promising.

My father’s recovery as outlined below is surely anecdotal. It is not definitive scientific proof that stem cells are safe and/or effective for everyone. I have not submitted my father’s case as a formal case report in a medical journal. I am just a loving son who happens to be a physician, and has been asked to share his story. But although anecdotal, my father’s response is by no means unique. It can be added to the ever-growing number of patients with remarkable responses to treatment in studies worldwide such as those conducted by Mironov.

Now for the play by play:

October 26, 2014 my father suffered a left thalamic stroke, resulting in severe right arm and leg weakness, and difficulty speaking. He was initially unable to walk, and could mumble only a few words. Over the following two weeks he showed some improvement, able to walk as much as 10 labored steps with a walker. He then steadily declined, despite the efforts of speech, occupational, and physical therapists, and became bedridden, unable to feed himself, and barely able to communicate. The following press release chronicles what transpired next:

Official press release Dec 19, 2014

Following the press coverage of our father’s deteriorating medical condition, the Howe Family was contacted in late November by Dr. Maynard Howe, (CEO) and Dave McGuigan (VP) of Stemedica Cell Technologies. McGuigan knew our family as a result of his previous employment with the Detroit Red Wings. Stemedica is a biotechnology company that manufactures allogeneic adult stem cells in its US government licensed, cGMP facility in San Diego, California. Although no relation, Dr. Howe and his brothers Drs. David and Roger are hockey players and big Gordie Howe fans, having grown up in Minnesota. They wished to help our father by generously facilitating Dad’s participation in a stem cell clinical trial at Novastem, a licensed distributor of Stemedica’s products in Mexico.

Novastem (www.novastem.mx) is currently conducting federally licensed and Institutional Review Board approved clinical trials for several medical conditions, including stroke, using Stemedica’s stem cell products. At the time we were contacted, Mr. Hockey had been rapidly declining and was essentially bedridden with little ability to communicate or to eat on his own.

After reviewing the information on Stemedica and Novastem, our family decided to give our father this opportunity. On December 8th, Mr. Hockey underwent a two-day, non-surgical treatment at Novastem’s medical facility. The treatment included neural stem cells injected into the spinal canal on Day 1 and mesenchymal stem cells by intravenous infusion on Day 2. His response was truly miraculous. At the end of Day 1 he was walking with minimal effort for the first time since his stroke. By Day 2 he was conversing comfortably with family and staff at the clinic.

On the third day, he walked to his seat on the plane under his own power. By Day 5 he was walking unaided and taking part in helping out with daily household chores. When tested, his ability to name items has gone from less than 25% before the procedure to 85% today. His physical therapists have been astonished.

His physical Medicine and Rehab doctor, his attending nurse, and our fathers multiple caregivers were equally astonished. These are all health care providers who work largely with stroke patients. None of them had ever seen such a remarkable, rapid recovery.

Since the press release our father has continued to improve, slowly and steadily. His quality of life is excellent, as he can do essentially all of the things he loves, including going for walks, running errands, playing driveway hockey, tossing a football, doing dishes, sweeping floors, and raking the lawn. He walks unaided, and can walk a half mile with short breaks. He still has severe short term memory loss, which he had before the stroke, possibly due to traumatic brain injury or a vascular type dementia. We are hoping for this to improve with time. Cognitively he is still otherwise excellent, having a great sense of humor and being able to converse in short sentences well. His long term memory remains intact. He is an absolute pleasure to be around, and his personality is intact.

Since the procedure, he eats like a horse, and rapidly regained the 25 pounds he had lost while bedridden. He also sleeps like a bear, sleeping 13 hours straight, then eating a huge breakfast, then sleeping another 2 hours before remaining awake for an 8 hour stretch. We are told this pattern has been observed in other stroke patients treated with stem cells. We have also been told that additional improvements can be seen sometimes out to 9 months post treatment. We have seen no decline in function since the treatment; only improvement.

Novastem has recommended repeating the stem cell treatment for my father at the 6 month mark, as their experience suggests additional gains can be had. They again are offering this at no charge to my father, because he is of course Mr. Hockey. We are planning to have this done in June.

The staff at Novastem picked up my father, brother, and I at our hotel in San Diego, and it was a short drive, perhaps 20-25 minutes to the clinic. I found the clinic to be squeaky clean and the staff to be very professional. The “clean lab” where the cells were prepared was visible through a window, where various quality assurance testing such as sterility and counting of the cells was performed. I was present while the anesthesiologist performed the lumber puncture in my dads low back using a tiny 25 gauge needle  to infuse the neural stem cells, and also when the internal medicine physician and nurse administered the mesenchymal stem cells through a one hour IV infusion. I was thoroughly impressed with their professionalism and sterile precautions. As good as any hospital I have worked in. I would have no reservations of having a loved one treated there.

Written by Murray Howe

Unplanned Opportunity

Jennifer Griffin, a quad amputee at age 35 with an appetite for laughter, recounts a collection of funny mishaps involving her wigs and prostheses. Performed in "Elephant in the Room" on March 17th, 2014 at Hamon Hall in The Winspear Opera House, Dallas, TX. more: http://wp.me/p2P50w-1z0

Everything I had learned and experienced in life was being tested at the highest levels. Every hope, dream, fear, insecurity and glimmer of faith was asking for my strength and I wasn’t sure if I could deliver.

We had only been married for 6 months in March of 2007 when everything about who we were as individuals and what we wanted out of life changed.

My day started as it normally did, except I began feeling ill. All my symptoms lead to a self-diagnosis of the flu. However, as the days went on and the symptoms progressed I began doubting the simplicity of my diagnosis.  My husband drove me to a clinic on the 2nd day as I was doubled over in pain and all I wanted to do was sleep.  The doctor instructed me to take Milk of Magnesia and to “keep in touch”.   By the time we understood how serious my situation really was, I was in the ER under the knife.  This was way beyond the strength of Milk of Magnesia!

The 3rd day of not feeling well lead to my speech becoming slurred, my blood pressure dropping, my kidneys failing and ultimately falling into Sepsis.  When I arrived in the hospital I was taken directly into surgery and woke up approximately 6 weeks later from a medically induced a coma.  The surgeons had discovered an abscess on one of my ovaries, which had ruptured, and the infection from the rupture got into my blood stream and became toxic.  The toxicity took over my body and shut down all my organs one breath at a time.

The end result was nothing anyone could have imagined.  As my body was fighting to stay alive the oxygen and blood flow went to my brain and heart to support the body’s efforts. In doing so, I survived.  But, my extremities did not.  I left the hospital a 35-year old quad amputee and someone I did not recognize. I had lost both legs (below the knee) and parts of both hands (below the wrist).

The only thing I recognized were the faces around me, the touch of my husband, and the drive to fight through this. I just didn’t recognize what to do with it all. My days in the hospital were spent discovering new sadness, fear, fight, ambition and faith.  I was all over the map.

After 3 months, my medical team informed me that I was leaving to attend rehab and my optimism slowly began to unfold. I realized that for the first time in months, I was in control.  What I did from this point forward was finally in my control. I talked to myself everyday and lived by the idea that the quicker I accepted my situation, the quicker the situation could be conquered.

From day one in rehab I gave 110% and started discovering how much my body was still able to work with me. I remembered what it felt like to be five again. I had to relearn how to brush my teeth, drive a car, dress myself, eat, and much more. Every day that I learned something new I gained a little piece of my old selfback. I was on to my new journey.

Upon leaving rehab my outlook on life was positive. I was walking and overcoming so much with the support of my loving family and friends.

I returned to work as a paralegal within 8 months of returning home but quickly discovered this was not where my heart was at anymore. I was an entirely different person emotionally, intellectually & spiritually. I found myself continuously searching for activities and new challenges and overtime developed a passion to provide these opportunities to others.

Eventually, I stopped being a paralegal and became the Founder & Executive Director of the PLAY Foundation, which provides financial grants to other amputees in order to live a positive and healthy lifestyle.  Creating a community of other like-minded people was truly a blessing and continues to be.  It has provided strength for me to be a better person, wife, daughter, sister and friend.

Overcoming any hardship in life takes a great deal of support and mental strength I’ve learned that to get anywhere in life you have to nurture the relationships around you and allow them to see you both weak and strong.  But the bigger lesson is that, the day I realized my life would never be the same, I startedliving.

Life changes and things don’t go as we hope but there are many unplanned opportunities in the curve balls of life!

As I write this I think about Patrick Stein and realize how much strength he is giving my words right now. Everyone has a story but, some deserved to be told and shared more than others. He is a true inspiration.

– Jennifer Griffin, Founder and Executive Director of the P.L.A.Y. Foundation

Having always been an active sportswoman, Jennifer immediately began to focus on how she could turn this into something that would help others. It was out of this drive to do something with what had happened that the P.L.A.Y. Foundation was born. P.L.A.Y. provides the ability to live a positive, healthy, active life by helping them get back into sports, music, arts, and physical activities.

Love, Hope and Determination #MartinPistorius

Martin Pistorius was a healthy 12-year-old growing up in South Africa when he was diagnosed with a degenerative illness, he fell into a state where he was unable to move or communicate, but remained fully cognizant. " Subscribe to NBC News: http://nbcnews.to/SubscribeToNBC " Watch more NBC video: http://bit.ly/MoreNBCNews NBC News is a leading source of global news and information.

At the age of twelve my world, my life and that of my family underwent a devastating change.  A brain infection transformed me from a vibrant happy little boy into a seemingly empty shell. As memories of my former life faded into the abyss and I fought my way back I began to realize that I was trapped inside my body.

The next 14 years of my life were spent in institutions for the profoundly intellectually and physically disabled. I had become a ghost, unable to communicate and nobody believing I understood anything!

Thankfully my life began to change in 2001 when a person who was caring for me at the time happened to see a program about augmentative and alternative communication (AAC) on television. This set a chain of events in motion that ultimately led to where I am today.

I went for an AAC assessment, where it was discovered that not only did I have the ability to communicate but that I understood far more than was originally believed. Learning how to become a proficient communicator through the use of AAC was exciting but really challenging! However, finally having the ability to communicate meant that I could express my wants, needs and thoughts.

In 2003 I stopped going to the care centre and started working. A new adventure had begun and looking back on it now, it’s been quite a ride. Lots of highs and lows, joys and tears along the way – it is sometimes hard for me to believe all that has happened in a little over a decade.

While there are many lessons I learned through my journey four main things come to mind.

The first is hope, no matter how despairing things may look, there is always hope.

The second, the difference one person can make. There were many times were I had lost all hope and a seemingly random stranger smiled at me. That simple act, that connection with that stranger with kindness in their eyes was enough to reignite hope within me. Another time while gravely ill, wanting to die, I received a visit from someone totally unexpected. Suddenly I realized that at least one person cared if I lived or died, so I began to live again. There are many more I could mention who knowingly or unknowingly made a difference to my life.

The third is determination. I have faced and triumphed over more adversity than a lot of people will face in their lifetime and often it has come down to simply never giving up. Trying just one more time, fighting when everything in you is telling you to quit and believing you will get there even when you don’t know how.

Finally, love. In all its forms transforms lives, gives you a reason to keep going, to live and brings comfort and healing. Never underestimate the power of love.

I have had an incredible journey through life so far. For years people said I should write a book. It was something I had often thought about. However, there always seem to be some or other reason not to write a book, until 2010 when almost out of nowhere things fell in place. I had the time, I was emotionally ready and I finally really wanted to tell my story.  In 2011 after nearly a year of work, my book Ghost Boy was published. To my amazement, my story has become an international best seller, described by The Sunday Times as “It is a deeply affecting and at times shocking book… The Diving Bell and The Butterfly but with a happy ending”. My greatest hope in writing my book is that will mean something to someone, and if I am really lucky make a positive difference to their life.

– Martin Pistorius

For more information on Martin: http://www.martinpistorius.com/

About Martin’s book “Ghost Boy”: http://www.ghostboybook.com/

Out of the Darkness, Stroke survivor Allison O'Reilly

Former MedStar NRH patient Allison O'Reilly explains how she was able to regain control of her life following a life changing stroke. Learn more about our Stroke Recovery program: http://ow.ly/MmzuN

My name is Allison O’Reilly, Stroke Survivor.

One weekend in the fall of 2010, I was a woman engaged in a full time career, my family and the challenges of daily life. Then over what should have been a normal day, my life radically changed. I had a brain stem stroke and was locked-in; all I could do was blink my eyes. It is not what you think of, when stroke comes to mind.

Locked-in syndrome (LIS) refers to a very rare outcome (only a few hundred cases are known worldwide) of stroke, caused by a stroke in a small but important area of the brain. This area, located in the brain stem, is a conduit zone for the brain’s motor pathways. It is different from other strokes in both its location and severity. The brain stem maintains breathing, houses the cranial nerves, and contains nerve pathways that connect your upper brain to the spinal cord. Individuals with LIS are conscious and can think and reason, but are unable to speak or move. The disorder leaves individuals completely mute and paralyzed. Persons with LIS can communicate using a communications board via an alphabetical code. My speech therapist at MNRH, Lauren, introduced me to a communications board to use. A person goes up, down, and across the columns with the alphabet, and the patient blinks at the right letter. The letters form a word or words as a way to communicate—not the easiest, and patience is required. Lauren also created a book of visuals of commonly used items to point to as well. This was not used for long, as I made rapid progress.

“You can feel all sensations. You can feel every touch on your body but are unable to move; all you can do is blink or roll your eyes up and down.”

LIS is often mistaken as being the same as being in a vegetative state, which is when people can open their eyes but are not aware of their environment. In locked-in syndrome, the person is fully aware of her environment, but cannot talk or move. In truth, you look different, have an empty look, and can’t do anything, but you are still the same person inside.

LIS is the most severe neurological condition to be admitted into hospital settings. Individuals with LIS have the highest level of disability among stroke survivors. Early recognition of the LIS state is important for rehabilitation. It is essential that these patients play an active role in decision-making processes regarding their rehabilitation (through blinking). LIS affects around 1 percent of stroke patients. For those who have had a stroke, there is no cure for locked-in syndrome, nor is there a standard course of treatment. It is extremely rare for patients to recover any significant motor functions. About 90 percent die within four months of its onset.

In a classic, complete locked-in syndrome, the ability to move all the limbs, the trunk, the neck and even muscles of the face is completely destroyed; you lie completely motionless and devoid of expression and speech. Breathing may or may not be impaired. Some people may need the assistance of a breathing tube and a respirator machine. Feeding must be given by a tube in the stomach. I had both.

Though, surprisingly, never in pain, it took a while to get used to the idea of being fed through a feeding tube. You begin to realize how much you have to depend on other people—to get dressed, wash, scratch an itch, everything. Being completely dependent on other people is a terrible adjustment to make. It takes time, even though everybody is so willing to help.

When you are locked-in, time goes by so slowly, it just drags by. I don’t know how to describe it. It’s almost like time stands still. It’s a terrible, terrible place to be. It’s hard, but you’ve got to have hope that you are going to get out of this nightmare. I was at the mercy of other people to care for my every need, and that was incredibly frustrating, but I never lost my alertness. I was completely aware of everything going on around me right from the very start. Thoughts of my life before the stroke—working, reading, friends—and, of course, my husband, Kevin kept me going.

My book “Out of the Darkness” is a personal look at the overwhelming challenges of a brain stem stroke, the painstaking process of relearning everything, the meaning of patience and the responsibilities that fall to a loving husband who wants the best possible treatment for his wife.  It’s about what you learn about yourself when faced with adversity.

Out of the Darkness chronicles my massive stroke along with my will and determination to fight for my life and independence. It’s about what you learn about yourself when faced with adversity.

This is a story of inspiration, love and hope, as well as, sharing lessons learned during devastating time. I have been told that people think of me and how I am overcoming my challenges as a modern hero and invaluable role model for those with little aches and pains.

Every Stroke is different and every recovery is different. Out of the Darkness is not meant to downplay people’s motivation or willingness to recover; it’s my story of healing, as well as sharing lessons learned with others during this devastating time and to be a non-clinical voice for the Medical community, especially for younger Stroke Survivors.

I hope you will read the book and share it with those that might also find it inspirational.

It’s not the disability that defines you, it’s how you deal with the challenges the disability presents you with.

—Jim Abbott, Former major league pitcher

How would you deal with a stroke?

If it happened to a loved one or friend, would you walk away or towards that person?

How would you like people to react to youif a stroke happened to you?

Seasons of Love

Five hundred twenty five thousand six hundred minutes

Five hundred twenty five thousand moments so dear

Five hundred twenty five thousand six hundred minutes,

How do you measure, measure a year?

I transferred to Loyola Academy my sophomore year, and upon transferring was cast in the school’s production of the musical Rent. As I was inviting everyone in my English class to come see the show, Patrick enthusiastically assured me he was coming to see it. I figured this was another one of Patrick’s endearing and good-willed, yet unfulfilled, promises… just like he promised to take me and our English teacher, Ms. Farrell, on a date… together. These promises occurred on a weekly basis. We would usually start the class off by Patrick saying something along the lines of, “Ms. Farrell, when do I get to take you on a date?” (Mind you, she never reciprocated the feelings, but he was persistent.) Then he would turn to me and say, “We can all go to the movies together.” To say that Patrick knows how to charm a teacher, or anyone for that matter, is an understatement. But I digress.

The day after my final performance, I came to class and said something sassy to Patrick about him not attending. He refuted, claiming that he saw the performance. So, I quizzed him about the show thinking there’s no way the Patrick Stein was going to spend his Friday or Saturday night sitting in the theatre. He stopped me dead in my tracks when he said, “Yeah, that song five hundred twenty five thousand.” He had proved me wrong. He knew a lyric to one of the songs. To this day, I have no idea how he knew that song, because I know for a fact he didn’t see the show. But the idea of him knowing one song from a musical warmed my heart, so I let it go. It became just another joke to us, like our many “scheduled” dates with our teacher. Little did I know this song would come to mean so much more.

Fast forward to October of our senior year. I went to visit him after his surgery, and when I walked in the room I didn’t know what to say. I was so used to the jokes and the witty banter that I was afraid I would get too emotional, and Patrick, a high school boy, I remind you, would never want me to come visit again. So, I stuck to our usual. I joked around and teased him and reminisced about our crazy religion teacher. And then came a moment of silence, and I don’t quite remember how it happened, but all of a sudden I was playing “Seasons of Love” or as Patrick calls it “five hundred twenty five thousand” on my iPod and singing along. If I remember correctly, he asked me to sing it, but he may read this and say I’m totally wrong and that I forced him to listen to me J. Nonetheless, in that moment his eyes lit up and I was barely able to sing as I fought back tears. I knew this song meant something more. This song filled the silence when I had so much to say but didn’t know how to say it. For the first time I experienced what people mean when they say music has the ability to connect people; it’s a universal language that expresses what cannot be put into words. It brought a certain energy and feeling of light into that room that felt so heavy and inescapable.

I’m pretty sure Patrick might hate this song now because Mrs. Stein will occasionally request that I sing it, but this song will always remind me of Patrick. I’m sure he would much rather be associated with a Lil Wayne song, but I can’t help thinking of Patrick with love and true friendship and moments fulfilled. He lights up a room as he attempts to charm whichever female will listen, or as he makes fun of someone with that always-forgivable smirk. And through it all, this hasn’t changed. His humor, his love, his endearing friendly demeanor remains in tact. Through all these passing seasons, he has measured his time with love and friendship when it could have been easier to measure them by strife and hardship.

I know it sounds cheesy and corny, and I wish I had a more humorous story to share that embodies Patrick’s ability to make anyone laugh, but if there’s one thing I’ve learned from Patrick it’s that each day counts and that every single day should be measured with lots and lots of love. Anyone who has ever stepped foot in the Stein’s house knows it is filled with overflowing amounts of love, and the laughs can be heard from the other end of the neighborhood. And I assure you, these are due to Patrick’s jokes. He will always make sure everyone in the room is having a good laugh, maybe at their own expense, but even so, everyone will be laughing. So, perhaps we can make our own version of the song (as Patrick always likes to do) to help us all remember how very dear every five hundred twenty five thousand six hundred minutes are and say, “Measure your life in love… and lots and lots of laughs.”

– Keeley Miller, Patrick’s friend

Sourcehttp://posttrib.suntimes.com/photos/galleries/19935215-417/loyola-academy-community-shoots-free-throws-to-support-former-student.html

Exploring Locked-In Syndrome

I had heard of locked-in-syndrome but I remember the occasion when I first viscerally felt locked-in-syndrome. Marcus Reichle, a brilliant neuroscientist at Washington University of St Louis, had come to give a seminar at University of Chicago. As his host, I took him out to dinner that night. He told me the story of Jean-Dominique Bauby who blinked out The Diving Bell and the Butterfly with one eyelid. I was mesmerized by the story. I immediately bought Mr Bauby’s book, read it, and re-read it. I was struck by the paradoxical juxtaposition of nearly complete loss of function with extraordinary purpose. The dignity and resilience that Mr Bauby showed in the face of hardship and tragedy filled me with awe.

The facts of locked-in syndrome forcefully express the full magnificence of the nervous system: the bodily devastation occasioned by its failure, and the soaring heights of its untouched cerebrum. There is no better way to introduce neurobiology than by telling the story of being locked in. Recently I used Mr Bauby’s story to introduce my Coursera MOOC, Understanding the Brain: The Neurobiology of Everyday Life. I was subsequently alerted to Patrick Stein’s experience with locked-in syndrome by a MOOC student. I watched the allinmyhead.com video several times. From my perspective as a neuroscientist, I immediately noticed that Mr Stein retained some facial and eye movements that Mr Bauby did not retain after his stroke. To get the students thinking about neuroanatomy, I asked them to “identify the similarities and the differences in the two cases“. Little did I know…

I was expecting students to write about facial expressions, eye movements, swallowing and the like. And of course some students did do exactly that. But MOOC students quickly turned the conversation into a deeper, more philosophical discussion of the role of attitude and determination in recovery. In response to one student’s suggestion that Mr Bauby was most interested in a life of the mind and was not trying to move, another student (MB) reminded all that “determination is only one factor in how much a person will recover.”  Undeniably, this is true. Determination cannot stave off every illness. In the case of locked-in-syndrome, the pathophysiology dictates severe disability and holds most of the proverbial cards. Recovery may occur at the margins but regaining past abilities in toto is unlikely.

Holding individual determination as the sole indication of paramount humanity inappropriately homogenizes diverse experiences. As MB pointed out, determination to go-go-go is counterproductive in situations when the most recuperative activity possible is rest-rest-rest. In fact, built into the nervous system are both go-go-go (sympathetic) and rest-rest-rest (parasympathetic) systems. One is not better than the other; they are simply different and either is most appropriate in different situations. In my view, accepting that rest is a way forward or that death approaches is just as “strong” an attitude as fighting to power through illness and stave off death’s arrival.

More philosophically, the idea that individual determination is an attitude fit for all denies us our essential individuality. Hamlet’s soliloquy:

…Whether ’tis nobler in the mind to suffer

The slings and arrows of outrageous fortune,

Or to take arms against a sea of troubles…

can be viewed as an articulation of the dilemma between a suffering acceptance and an armed struggle against misfortune such as illness. I am no literary expert but I think that Shakespeare’s point was to pose the question rather than answer it. Ranking our perceptions of peoples’ chosen attitudes toward adversity is energy that would be better spent on extending compassion to all persons who struggle against misfortune. Fighting and accepting ill health are different approaches. They are not better or worse ways of being. Both Jean-Dominique Bauby and Patrick Stein faced an incredible challenge when they were locked into their brain and both deserve our compassion, support, and respect for their journeys.

I want to close by extolling those who stay engaged with loved ones who are locked in. In Bauby’s case, there was a strong support network of friends and family. From the video available it appears that Mr Stein’s young friends, as well as his family, have remained close. I stand in awe of all of these people who have chosen to stay open, loving, and fully engaged in the face of tremendous sadness.

Guest Contributor: Peggy Mason

Peggy Mason graduated from Harvard with a BA in Biology in 1983. She received her PhD in Neuroscience from Harvard in 1987. After postdoctoral work at the University of California – San Francisco, she joined the faculty at the University of Chicago in 1992. Dr Mason is now Professor of Neurobiology. Dr Mason is committed to teaching neurobiology to anyone that will listen. She has taught medical students since her arrival at UChicago, with the exception of a 2 year hiatus during which she wrote a textbook, Medical Neurobiology (Oxford University Press, 2011). Dr Mason is now offering a massively open on-line course, Understanding the Brain: The Neurobiology of Everyday Life through Coursera (https://www.coursera.org/course/neurobio). Dr Mason’s research is focused on the neurobiology of empathy and pro-social behavior in rats. 

State Champs Crushing It

In my 9 years coaching at Loyola, our teams have had a great deal of success. Between swimming and water polo, Rambler squads have won multiple Catholic League and Sectional Championships, took 4th place at State in both swimming and polo, took 2nd and 3rd place trophies in water polo in and most recently won the water polo State Championship. This is obviously due to great kids and great parents. I have had great polo assistants helping me over the years and we have had outstanding swimming head coaches and assistants throughout. With high school sports, attrition comes with the territory. We get an entirely new group of kids every 4 years, and coaches come and go. When I look back at my 9 years at Loyola, I feel lucky that I have actually had a constant through-line over the last 7 years. His name is Patrick Stein.

I will never forget the first day I met Patrick, it was in November of 2007. I asked him to do a nice easy 200 yard warm up. Young Patrick did nothing short of sprint the whole thing. I knew right then and there we had a winner and a future leader. Clearly my request to do the warm-up ‘easy’ fell on deaf ears, as to this day Patrick has never taken anything easy, and had always given 110% in all endeveours. In the Spring of Patrick’s freshman year, we won our first JV Catholic League Polo Title in 21 years. For being new to the sport, he sure didn’t look like it, scoring 15 goals in 19 games and was a coach’s dream on defense. Sophomore year, Patrick took a leadership role on the JV Polo team, and was the definition of a ‘Leader by Example.’ He was the hardest worker on the team, held himself and his teammates accountable and was nothing short of amazing in the pool, scoring 87 of the team’s 250 goals, while also leading the team in ejections drawn and assists. Patrick had a great swim season as well. Patrick, along with Danny Stauder, Brendan Husleman and Patrick Rahill set a Frosh/Soph school record in the 400 Free Relay that still stands as the Loyola Record 5 years later.As a junior, Patrick continued to grow as an athlete, but more importantly as a leader. I can honestly say that every single member of our current swimming and water polo teams have benefited from Patrick’s dedication to the weight room. Patrick led the way as our teams took to the weight program like never before. He pushed his teammates, and mentored those younger than him. The ‘Crush It’ spirit has never changed since, and we have Patrick to thank for that enthusiasm and hard work. At the 2010 JV Conference Championship, Patrick showed what hard work can do as he simply dominated the meet. He won the 200 Freestyle (1:52.32) the 100 freestyle (50.39) and his 200 and 400 Freestyle Relays not only won, they remain Conference Meet Records to this day. Patrick then took his leadership and speed to water polo season, and didn’t disappoint. Patrick was a starter, 4th on the team with 29 goals and helped lead Loyola to a Sectional Championship and a bid to the State Tournament for the first time in 3 years. Patrick was named captain of both the swimming and water polo teams for the 2011 season and had developed into what we as coaches want from all of our athletes; hardworking, unselfish, a Man for Others.

It often amazes me when these fine young men at Loyola teach me a thing or two about life. As a coach, you do your best to teach life lessons through the medium of sport, but sometimes they are taught to you. As we all know, Patrick Stein’s life changed forever in the fall of 2010. From that moment on, Patrick has taught me more about hard work, dedication and never giving up than any other human being or individual life experience ever could. Patrick has taught everyone that we should take nothing for granted, taught his teammates and coaches that having wonderful experiences through sport is a privilege that has been given to us, and most importantly that the words “I Can’t” or “I Give Up” are simply unacceptable. His positive attitude is contagious and continues to serve as an inspiration to our Rambler athletes, and anyone who has met this warrior.

In 2011, I watched a swim team rally behind their leader to take 4th place at State, our highest finish in 20 years. I watched a water polo team that started the season 0-5 take 3rd place at State. That historic run was no doubt initiated by Patrick’s first visit to Loyola on his water polo Senior Night. His inspirational visit was the first time all season our full team was on deck ready for battle, and they took down one of the best teams in the state in front of a packed house who knew Patrick would be in attendance. Patrick continued to attend games that season, the difficulty of which I cannot begin to comprehend, but the results of which cannot be overlooked. Patrick led us to that trophy, was present in every huddle and every team meeting, and there will be a 3rd Place State Trophy in the trophy cases at Loyola for eternity that says ‘Captain – Patrick Stein’ to commemorate his true leadership and strength.

Patrick’s positive effect on the aquatics programs did not stop there. In 2012, whenever possible Pat continued attending games to watch his teammates make another historic run, taking 2nd place at State, our highest finish since 1989. Having Patrick on our bench made the stressful situations seem calm, and in what can only be defined as a miracle, even made his crazy coach calm down a bit (insert Patrick’s infectious laugh, here.) Having Patrick at games over the last 4 years, knowing all he wants is to jump in the pool and get back to dominating the game he loves so much, inspired a group of freshmen in 2011 to lead as they were taught by their captain. They did, and they have a State Championship to show for it. Whether he believes it or not, Patrick got us there.

I can’t imagine what would be going through my mind if I was in Patrick’s shoes, yet he takes the time to ask me about our team and the players on our team every time I have the privilege to visit with him. Prior to this polo season, Patrick asked me “Is Shewchuck any good?” Pat was referring to 2014 Captain and fellow OLPH graduate Cameron Shewchuck. Steiner, the answer is yes, but I think you now know the answer to that as you were on deck for our magical State Championship Game. Cam was one of the main reasons we won a state title this year, and was named Illinois Player of the Year for his efforts. At the All-State banquet, Cameron gave a great speech thanking all of the appropriate people for helping him accomplish such great feats, but went out of his way in his speech to thank Patrick Stein for teaching him what it means to be a great teammate and a leader. Since the fall of 2007 I knew Patrick Stein would have a positive impact on our program. He has, he continues to and he will continue to inspire everyone who has had the pleasure of meeting such a fine young man. Pat, you are the strongest guy i’ve ever met. Your outlook on life is an inspiration to many, including myself. Keep fighting, brother.

Dan Hengelman Head Coach, Loyola Academy Boy’s Water Polo

Someone to look up to

Although there are countless stories about Pat that I can recall, there is one that stands out the most. As most of us may know, on the night of homecoming 2010 Pat awoke with a terrible headache and was rushed to the hospital. At that time, the doctors had found a large aneurysm on Patrick’s brainstem and scheduled him for life-threatening surgery. On the day before surgery I visited Pat in the hospital. I remember it being very unnerving walking past all the rooms filled with sick men and women, but that all changed once I got to Pat’s room. There he was, not an ounce of fear inside him playing “Lil Wayne” on his iPod and asking who had “hooked up” on homecoming the night prior. To say I was surprised would be a blatant lie because that’s the way Pat was and still is. He was less than 24 hours away from the most terrifying thing any of us could fathom and he was cracking jokes and reciting verses to his favorite songs.

Four years has passed and I still consider Pat to be the most fearless and courageous person I know. Every single time I have been to his house, Pat still finds a way to make me laugh. There have been times when I have brought people to visit Pat who were a little nervous at first but then you get into his room and he spells out “Luke that shirt makes you look fat” then there is that immediate feeling of welcoming. I can only hope to one day have the strength and fortitude that Pat has. He is a constant reminder to all of us to be a better person each and every day. I truly mean it when I call you my 3rd brother; I know you will continue to fight day every single day. Love you bro!

- Luke Dezell, Patrick’s friend

10 Tips medics must say to the Brainstem Stroke survivors loved ones

Inspiring you to set & achieve your GOALS! I walk my own talk! (Still do!) Goal setting speaker. http://www.kateallatt.com http://www.gonnaflynowbook.com http://www.fightingstrokes.org After dinner speaker. Inspirational keynote speaker. Charity speaker. email: kate@kateallatt.com

I tell medics they should say:

1. “All strokes are different. Fact. “You never lose a VOLUNTARY pathway if it returns!

PLEASE TELL THE PEOPLE AFFECTED BY STROKE & THE PATIENT!

2. “On a graph, we just don’t know where your loved-one will be. They could be like Kate Allatt, Richard Ford, Mark Ellis, who appear quite ‘normal’ considering after their period of locked-in syndrome.  However, there are people like Tony Nicklinson who represented a very severe case indeed, with every single permutations in-between. We just don’t know the long-term prognosis in the early weeks or months of diagnosis.”

3. “Intensive and good therapy immediately after the coma and be patient-centered – psychological, emotional, neuro physiotherapy, Speech & language therapy (S.A.L.T), Electric Stimulation, PRACTICE..It’s about Repetition, Frequency & Intensity, as opposed to doing task related activities like getting dressed or making a bed.”

4. “You must have an ‘end of word’ box on the color-coded communication board in ICU & Rehab and a TV & radio, which gets switched on/off.”

5. “The word ‘plateau’ is GARBAGE!  It is a term used by medics to describe the way progress will slow to almost nothing, but that is really due to NHS funding and ignorance, rather than the patients’ own desire or ability to improve.”

6. “Slow or fast, large or small, the patient will ALWAYS make progress improvements, following a stroke. If the patient must really want to work hard in therapy and alone. Please note, that progress does NOT come easily. I remind you of Christine Waddell, 17 years with locked in syndrome and actually making phenomenal progress. Fact. Loved-ones must not try to do too much for the patient. It frustrates the patient and you. This also impacts on patient progress. This is deeply irritating, even though your intentions are not often borne out of irritation, but a genuine desire to help.”

7. The patient will feel, shock, pain, grief, boredom, sleeplessness, denial,  anger, isolation, depression and acceptance. That’s the loss cycle. In time the patient MUST really want to improve. You can lead a horse to water, but you cannot make them drink it! I’ve learnt that. Be patient and be tolerant.

8. As Loved-Ones you MUST stand your ground with the medics and patient, be diplomatic, but forceful use video evidence, keep a diary. Don’t allow medics to accuse you of wanting your Loved-One back so much that you actually mis-see their small flicker or progress. Small flickers lead to big things! Proactive loved-ones are a key in the patients level of recovery. Video changes and keep a diary.

9. Read: The Brain That Changes Itself, by Norman Doidge.  nResearch neuroplasticity and how the brain makes new pathways.

10. The patient MUST really WANT THIS!

by Kate Allatt Fighting Strokes Founder, Internationally Published Author ‘Running Free’ & Speaker.

A 70-mile-a-week runner and mother of three, Kate Allatt, nearly died after suffering a severe stroke caused by a blood clot in her brainstem in 2010.

When Kate woke up from an induced coma three days later she was completely locked-in – her body was completely paralysed except for her eyes, however her brain was fully functioning and she could see, hear and understand everything going on around her. She felt helpless terror as she was trapped in her own body unable to move or speak. The nursing staff and my family assumed she was brain damaged and the doctors said she would never walk or talk again.

After three weeks Kate’s husband and best friend noticed that Kate was blinking in response to things going on around her, they realized that she could communicate via a system of two blinks for ‘yes’ and one blink for ‘no’.

Nine weeks after the stroke Kate was off the critical list and moved to the rehabilitation ward where the next stage was to learn to accept and live with her severe disabilities.  However three months later Kate decided to prove everyone wrong, she spent days just looking at her limbs willing them to move. She gradually regained flickers of movement in her right hand, which she was able to work on with physiotherapy exercises to strengthen her grip. Soon she was able to use a computer and Facebook, providing a valuable communication tool and lifeline to her family and friends. Within months of physiotherapy, she managed to sit up.

Her family had been informed that Kate would never speak again, however she defied all odds and, five months after her stroke, spoke her first words, she later said to her speech therapist  ‘I will walk out of here and I will run again.’

Finally seven months later Kate made the emotional walk out of the hospital ward to the car for her journey home.  Exactly a year to the day after her stroke, she ran her first 20 meters.

@kateallatt

www.FightingStrokes.org

Inspirational Speaker www.kateallatt.com

Internationally Published Author ‘Running Free’

Because Patrick Stein is...

Teaser for 2014 Chicago Triathlon

Because Patrick Stein is, I want to be:

Fierce

Unrelenting

Strong

Fearless

Passionate

Intense

Because Patrick Stein is, I want to be:

Funny

Creative

Positive

Because Patrick Stein does, I want to:

Love

Laugh

Dream

Work

Compete

Persist

Because Patrick Stein can’t, I must:

Walk

Run

Dance

Play

Swim

Ride

Make love

Use my voice

Because Patrick Stein is, so am I.

- Mary Jo Harte

Eyespeak and Lusovu's Kickstarter Campaign

LusoVU is presenting a new product, named EyeSpeak, which will literally allow its users to talk with their eyes. The system is based on Epson's BT200 smart glasses on which a micro camera, a microphone and a speaker will be integrated. All these will be controlled by a microprocessor unit that will monitor the user's eyes position.

LUSOVU LAUNCHES KICKSTARTER CAMPAIGN TO SUPPORT THE DEVELOPMENT OF AN INNOVATIVE DEVICE THAT WILL ALLOW PEOPLE TO COMMUNICATE BY MOVING THEIR EYES

Eye tracking augmented reality glasses that revolutionize the hands free interface. Specially designed for ALS, MD and SCI patients.

It is our mission to give voice to those who can’t communicate. In this moment of our “history” we want to bring our knowledge from Space down to Earth, because we believe that we can make a difference! We can do it and we can change many lives. So, we will provide a pair of glasses with the first autonomous augmented reality system based on eye-tracking, designed specifically for people who have amyotrophic lateral sclerosis (ALS) disease, are tetraplegic, or who have any other disability affecting their communication abilities such as locked in syndrome (LIS), muscular dystrophy (MD), spinal cord injuries (SCI), and some cases of traumatic brain injuries.

Our glasses will change the way these people can communicate and interact with the world. Eyespeak has incredible speed and precision, it is easy to use, has ultra-low latency and auto-calibration without the intervention of the user (except for the first time it is used). It provides a truly new experience that allows the user to interact with the world like never before: just with eye movements. The device will write and speak for you. We will also have a developer version with an open source interface to give other possible applications to the world (augmented reality, games, etc).

EyeSpeak has an inspirational history and a special place in our hearts. The idea was triggered after our CEO received the sudden news that his father was diagnosed with ALS. So, after the impact, we are transforming this tragic event into something with meaning, something beautiful, something good. This is why we are totally committed to changing the lives of thousands of people throughout the world. We have the knowledge. We have the experience. And we have the motivation to do it together with you. Thank you for your contribution and for being part of this team! We will make a difference!

I believe that technology serves people as much as possible and as much as we want it to support our lives. I believe that good value for money is one of the best sentences to describe why we should develop a technology. I believe that this new system will provide incredible additional value to whoever has communication limitations owing to disease or injury. My father suffers from ALS and he has shown me that augmented reality would be very beneficial for this kind of limitation. And I have discovered that although rare, there are tens of thousands of people in the world with communication limitations. I want to give meaning to my father’s life and I would like to help all of you with similar communication limitations or who have a family member with such limitations. It is not a question of how but of a question of when. I applied to this crowd-funding platform because time is precious for whoever wants to speak and cannot speak. I can speak today but I want you too to be able to speak. We could wait for this technology to be developed for the video games industry and then apply it to your situation. But why wait if we can do it now? Today, I speak. Can you say ”eyespeak” 6 months from now? I believe you can and I know that you will speak through your eyes in a way you have never experienced before. And for those who speak but cannot write, I know this system will be also very important because it will greatly increase writing speed. I am fully committed to providing this product with the same quality philosophy that I am used to providing to my spacecraft customers, i.e. that it is robust, reliable, useful, fast, easy to use, and targeted at the customer. I won’t do any miracles but I assure you that you and my father will experience an interface system that will be much better than what you are used to. It has to be as good for you as it will be for my father. I will work as a team with my father to develop this and I want you to be part of this team. We deserve this!- LusoVU CEO, Ivo Vieira

Between the 16thof June and 16th of July 2014, LusoVU has a crowdfunding campaign running on Kickstarter, to support the development of an eye tracking device based on augmented reality glasses that will revolutionize hands free interfaces. The device is specially designed for people with motor and speech impairment.

LusoVU is presenting a new product, named EyeSpeak, which will literally allow its users to talk with their eyes. The system is based on Epson’s BT200 smart glasses on which a micro camera, a microphone and a speaker will be integrated. All these will be controlled by a microprocessor unit that will monitor the user’s eyes position. To reduce latency the eye tracking algorithms will be embedded on the systems firmware. With the augmented keyboard shown in the user’s field of view and the eye tracking routines, the users will be able to write words or sentences and have them spoken by a synthetic voice through the systems speaker. This device was designed specifically for people who have amyotrophic lateral sclerosis (ALS) disease, tetraplegia, or who have any other disability affecting their communication abilities such as LIS (locked in syndrome), muscular dystrophy (MD), spinal cord injuries (SCI), and some cases of traumatic brain injuries.

LusoVU launched a Kickstarter campaign on 16th of June that will be running until the 16th of July 2014. This campaign aims at gathering the necessary funds to make the product available within approximately 6 months. In case the campaign’s goal is not reached LusoVU is still committed to develop the device but it will surely take much longer for the product to be available in the market and therefore reach the people that are eager to have it. And time is of essence for people with some of these diseases. The campaign is also an excellent opportunity to acquire the device at much lower prices than it will be commercialized at a later stage.

“… LusoVU’s project to enable eye controlled communication via a wearable device will make a dramatic difference in my daily life. I will no longer have apprehension about my inability to communicate with others while I am in bed, in the bathroom, or away from home. Not being able to communicate is a powerless feeling but being able to wear my communication device wherever I am brings the power back to me. I hope that you will consider supporting this very important project that can help people like me and others with similar paralysis live better lives and communicate freely without bounds again.” – Francis Tsai – Artist, worked in the video games industry, comic book publishers, role playing games, trading card games, film and TV design. Authored two art instruction books.

LusoVU is a Spin-off of LusoSpace (www.lusospace.com) which inherits from its mother company a deep knowledge in state of the art technology and a DNA of quality solutions. LusoVU designs, develops, prototypes, integrates and produces Augmented Reality hardware and software solutions based on its acquired disruptive concepts that will enable it to reach beyond current paradigms of communication.

For further information on this subject please visit us on www.lusovu.com, call Rui Semide at +351213974363 or send an email torui.semide@lusovu.com