Founder and H.O.P.E. Team member - Peter V. Cornelis' story:

See "How We Started" tab at left

H.O.P.E. Team member - Joe Foley's story:

Starting with my career, I was employed by Morgan Stanley and Company as a Principle in charge of Financial trading for over 10 years.  I also served as a Director at both Bank Of America and Deutche Bank for several years. My troubles began while employed at Deutsche Bank in November 2001. I had fallen off of a motor cycle the prior month.  It had apparently caused a dissection in a vein in my brain stem.  I was in top physical condition and felt “indestructible”.  One night < a month after my motorcycle accident, I was having dinner with my family when my children noticed my mouth drooping on one side and my eyes fluttering.  I thought nothing of it—after all I WAS indestructible. The next day my world upended as I suffered a severe stroke.  Fortunately my wife was with me.  Unfortunately we decided to go to the emergency room of the local hospital where I proceeded to wait four and one half hours to be tended to.  Within minutes my speech was very slurred, my hearing failed on my left side, I had double vision, and was too weak to stand.  I then spent 3 months in two hospitals for my initial recovery.
 
            The bulk of my recovery, however occurred at home as I applied the techniques that I learned in the hospital(all here) and whichever other ones I could create.   Through a wide variety of rehabilitation techniques, and with my families cooperation( it was frustrating), I recovered most of what I had had in 6 months.  I remember my first day in O.T. here, when I said, incredibly”, I think that rehab is generally over rated. I have come 180% in my opinion since then.  I eventually succeeded in returning to work in 6 months. A bad idea since it both proved to be too optimistic an undertaking for me and the insurance company gave me a very difficult time in getting back on disability.
 
            I now run two successful businesses, which take a minimal amount of my time. The balance of my day is spent working with my friends at Hope For Stroke…a truly unique organization consisting mainly of stroke survivors and several prominent neurologists.  I feel at this point, as most of us can say at Hope For Stroke, my life is far more fulfilling now and I have gained a unique perspective. I think that most of us have turned a challenging situation into a positive one and I would like to help encourage others to do the same.  P.S.  I am still making subtle progress 8 years past my stroke.  It seems that stroke recovery can be a process that will occur throughout your life if you continue to work at it.

Bob Yale's Story:

After suffering a nearly life-ending brain stem aneurysm, and being "locked-in" for six months, I can recall very vividly that the only thing I wanted was to talk to someone who had "been there"; someone who knew the life changing effects of stroke. Then I met Peter and H.O.P.E. for Stroke. After that, things really turned around for me.

Now I really enjoy meeting people that are in the same situation that I was, and telling them that you CAN get your life back. I am living proof of that...

Don't let go, and never ever give up

Yi Ting's Story:

I was born in Puli, a small town in central Taiwan. My father was a violinteacher, and my mother a nurse and midwife. I was in love with music before I knew anything else, and for my fourth birthday, my fathergave me my first violin--a one-eighth size. Since then, I became inseparable from the violin, defining my young existence entirely by what I can do through the instrument. My performance career began at the age of five and continued for a decade. I first toured Taiwan at the age of seven as the youngest concert violinist in the country. In the following years, I performed numerous times as a guest soloist with professional orchestras in Taiwan and China, gave a concert forthe Norwegian Senate that was later televised in Norway, while continuing to give solo recitals.
At age twelve, I came to New York to study at the Juilliard School. Away from home for the first time, I was torn in multiple directions between excitement for the new opportunities, homesickness, and pure anxiety of being in a foreign land with overwhelming expectations from myself and my family. The extreme shyness I had since childhood was quickly cured as I took on the responsibility of navigating our way through this intimidating city without any acquaintance. I learned how to open a bank account, hunt for an apartment and negotiate its rent, call customer services, and register myself in school.
On my second year in New York, everything was on the way to success as I defined it. Then, a month after my thirteenth birthday, I began to experience pain in one arm. After a month of consultations with various doctors, I was diagnosed with spinal Arterio-Venous Malformation (AVM), a congenital vascular malformation. I underwent a number of interventional procedures in New York Presbyterian Hospital, which were experimental at the time. The procedures were successful, but the malformation could not be surgically removed due to its location. Over the following three years, my performing career took off like never before as I lived with the constant threat of rupturing aneurysms inside the spinal cord. I frequented the hospital for procedures and monitoring. Despite my hatred for AVM, I found the hospital to be a fascinating place. Discussing my problem with the doctors, answering their questions in front of residents and interns gave me a sense of triumph over AVM.
On August 27th, 2000, my life was changed forever. What the doctors dreaded for the past three years became a reality. While visiting my family in Taiwan, I suffered from a hemorrhage due to the AVM and was completely paralyzed from shoulders down. For weeks, my hearing and vision were impaired, and I could not move anything in my body exceptf or my neck and facial muscles. Words cannot even begin to describe the devastation that filled the hearts of my family and friends. My world came crumbling down as the result of a cruel, swinging sledgehammer called AVM, and I was left with its ruins.
After an emergency procedure, I was transferred to a hospital that specialized in physical therapy, where I spent the following five months, learning how to sit up, roll over, and eventually, stand. The childish pride I used to feel in a hospital disappeared as I was confronted by the full weight of the concept of disability. I saw another side of medicine, one that was not characterized by the self-importance of doctors and gratitude from the patients; instead, I saw the despair of those who suffered, and patience and compassion (sometimes lack thereof) from healthcare professionals and caretakers. Once in a while a spark of hope lighted up somewhere in the hospital, and for a brief moment, everyone felt normal again.
This seeming tragedy led to the most important transformation in my life that would not have otherwise happened. I was forced to reassess my life and realized that I was given a second chance to live for a purpose. Everyone falls at some point in life, disregarding who she is before she falls. The important thing is what happens after the fall. Before me were two choices: one, I could live in justified self-pity; two, I could give thanks for the second chance, get up,and become a better and stronger person than I ever thought I could be.
I came back to New York a year later, having recovered enough to standon my two feet and walk with the help of my mother as my support. Doctors and therapists congratulated me for the miraculous recovery I have made in such a short amount of time, but no one could predict how far I would recover and more importantly, whether I would ever suffer from another hemorrhage. I finished the last two years of high school while still attending Juilliard Pre-College and graduated with high honors from both schools. In May, 2007, I graduated from Columbia University with a degree in psychology.
The person I am today is the result of hope, which I have learned never disappoints. AVM, though once an object of hate and despair, has opened my eyes to the things that truly matter in life. Today, I am thankful for each movement of my body and for my devoted mother and friends who walked with me during the most difficult moments of my life. This “blessing in disguise,” as I have come to see it, has made me realize how strong a person can be. Having been empowered through the pain and adversity, it is now my life long commitment to empower others!

Nicole Stock's Story:

                        I HAD A STROKE WHILE PREGNANT

    Nicole Stock well had her brainstem stroke at a very inopportune time. That time. Was while she was pregnant and she was only in her 18th week of pregnancy. As the writer of this, I just have to say, “it is one thing to have a brain stem stroke from an Arteriovenous Malformation, that by itself is a big deal. Then to worry about your baby while having one can send chills up and down ones spine. She needed to pick a delivery date for her baby and decided on valentines day for the birth of her baby. Her daughter turned out fine.
    Nicole was  told that she had an AVM, right  temporal lobe by her brain stem. She was having serious headaches that made her nauseous. Something was not right and at 10PM called her Doctor who scheduled a CAT scan to verify that she had a stroke due to an AVM. She was rushed to the Hospital to have Gamma Knife surgery. She would lie in an induced coma after her Gamma Knife Surgery and needed to be intibated. Nicole does not remember anything about the month of September. In fact she barely remember much about the ordeal
    Many of us can identify with this feeling. Nicole was adamant to go home but she would stay in the hospital about a month. It doesn’t matter how long you spend in a hospital. It does matter what you go home with.
    Once at home, Physical Therapists came to the house twice a week and a county Nurse donated her time to help out Nicole.
    Initially her balance was unsteady, and has blurred vision since her stroke and Nicoles right side was affected. Nicoles stroke baby will be two on Valentines Day and Nicole was 29 when she stroked. We wish Nicole and her family a bright and wonderful future and thanks for sharing your story...Peter V Cornelis       

Nicole and her Daughter at the Hospital

Joanne Meyer's Story:

Itwas January 13, 2004. Joann Myers was getting ready for her day, when she crumbled to the floor. She felt as if her head was going to explode and the loud noises in her head were frightening.  Joann wanted to stand, but could not. She did have her cell phone in her hand and managed to dial 911. While waiting for the ambulance Joann managed to share her Breakfast with the emergency medical technician and it was already eaten. Doctors told her that she wouldn’t live, so when she fooled them and she did, she was told that she would never walk again.  Little did they know how determined this 23 year old was.

   When she was told she may die or never walk again, her main focus was to prove them wrong. Now 25, she set out to prove them wrong and concentrate on running a 5 k.  She made her mind up and was out to prove it. Joann was born with a rare but serious deformity at the base of her brain stem called an AVM (Arteriovenous Malformation) which is a cluster of blood vessels at the base of her brain that controls breathing, heart rate and other vital body functions.

    This time bomb, when it went off landed Joann in intensive care on life support. The event left the right side of her body paralyzed. She did double sessions of rehab from 5AM till 4PM. She hated going to rehab and was the youngest person there.  Her anger actually helped her recover and pushed her to prove everyone wrong.  Joann was always an athletic person and played field hockey and softball in school.

   She cried a lot and at times hated the world, her anger she had to let go of to make herself better and decided she would get even. It is that kind of fight we all need. With her determination, she made a promise to her Dad she would walk out of rehab. Which she did, even though her balance was horrible.

    She read a book by cancer survivor Lance Armstrong, title “It’s Not About The Bike”. The book inspired her, it was a major turning point in her life. Lance, sick from his radiation treatment kept telling himself ‘if I could just move.’ That word’ move’ inspired her and became her Mantra. That book and her loved ones, including her boyfriend who became her husband, was her support system. That support system and her determination is what got her to the goal line. She learned that by never giving up, she got to where she is now. Running 5Ks, living happily, from what could have been a major problem.  She wants people to know, to never give up, keep fighting and if you have to get ticked off, then get ticked off. Joann wouldl ike others to realize you can make the most out of a bad situation and do anything you set your mind to.

Joann Myers today, she has made the journey and looks forward to helping others.

Olympia's Story:

It started in 1999.....
I initially developed  visual problems then dizziness, severe spinning, numbness in my face, balance problem and confusion spells. All my problems were related to my heart condition as per my family doctor.  As time passed,  my symptoms got worse.  Lost six jobs due to my medical problems between 1999 and 2002.  My heart was checked by a wonderful, well-know doctor, Dr. David from Toronto. He suggested that I should have seen a neurologist  (my heart then wasokay), which I did.  In 2002 my symptoms deteriorated drastically and I was losing consciousness at work, on streets on my way home from work.
 
The neurologist's  diagnose  was an inner ear problem.  My CT scan was normal.  The terrible feeling that something was very wrong in my brain even today terrify me when I think about that time.   I remember one incident while driving to the Humber College for my make-up course, I become disoriented on the intersection.  I did not know where I was and what was going on.  It lasted a couple of minutes and then was gone.
 
In Dec. 2002 my live was changed for ever.  The ambulance was called as I got very confused and I was taken to the hospital where an an giogramwas done.  It revealed a 4 x 3 cm right parietal occipitalinter cerebral hematoma with mass effect. Angiography was carried out by Dr. Rosso and he was able to identify a small pial arterial venous fistula at the site of the hematoma.  I had a micro arteriovenous malformation - AVM for short.   I was told that I had this defect since my birth and that my AVM just burst causing massive hemorrhage and then a stroke.   Since that moment I went through hell and back. But I was determined to fight this illness. Despite my anger I had to fight.....I had a small beautiful grand-daughter then   (I have now two grandchildren), and I wanted her to know me. She gave me the strength to survive.
 
Today, I have some impairments like some vision disturbance, my balance is not perfect.  I am afraid that some day my scar tissues  may cause  problems.   But each day is better than the one before.  Is like my wings were injured but I am still able to"fly". I hope that some day I will find  myself and I will be happy asI used to be.   Olimpia

Susan Bennett 's Story - 6/5/2007:

Wow, it is March 2007. I need to do something to make my experience mean something. I need there to be areason for what I have been through. I know that sounds so cliché, but I feel that there is a reason. Other people will suffer because they will have no idea that they are at risk.

My five year anniversary is coming up, the anniversary of my bleed.
That should mean something to me. But it doesn’t. The whole anniversary thing is not quite the same for me as it is a cancer survivor. Such as “5 years and cancer free!”! That is because the more years between the cancer surgery and today signify full recovery.

Recovery, to me, means waking up and being me again. This is what I do to start my day: As I waken each morning I lie in bed and wait. I am in that place just before I open my eyes. I am me again. I am the girl that can not only walk but also run. And I can drive to wherever I want. Whenever I want...I really miss driving! I loved my car so much!!

When I am in that moment I pretend that this was only a nightmare. Just that...a bad dream that will be over when I open my eyes. But then I open my eyes and in that split second the reality is back. I can even move in slow motion in an effort to try to stop it. But I can’t stop it- I am awake. I shouldn’t complain. I am told “hey, you are so lucky to be alive”. I am so tired of being told that... I don’t feel lucky.

I have had two craniotomies. Here is a recap of the events that have brought me this time and position...

On May 21, 2002 I suffered a cerebral hemorrhage.  It felt as though my head had exploded. I lost unconsciousness...

What I do remember of that time was feeling very happy. When I have mentioned this to anyone they assume the feeling was due the drugs that I was given while I was in a comatose state. But I know that I was happy because I was with my dad. I was there, in this happy place, with my dad who died 4 month earlier.
 
I lost consciousness when I reached our local hospital. I woke up 7 days later in a NYC hospital, an hour away.

I could barely see. I couldn't speak. I couldn't walk. There was no explanation for this. I was a healthy, active young woman; and now there was only half of me...well, not really, but it sure felt that way! I was convinced that my right arm and leg were amputated! They were literally out of sight, out of mind!

My right side and my eyesight were affected by the brain hemorrhage and surgeries. When I woke up Columbia-Presbyterian Hospital, in NY, no one understood what I was trying to say. The process of speaking was something that I could not do.  I understood everything that was said around me. I heard and comprehended what everyone said but I was not able to speak the words that were in my head.  No words would come out.

Some people treated me as though I was mentally incompetent because I could not speak. It hurt my feelings terribly when I heard what they said about me. Didn’t they did not know that I could still hear?  

I wass uddenly a character in a dream. The nurses, doctors and staff, my family and friends, did not understand. They treated me as though I didn’t comprehend what they said. I understood everything that I heard. I could not tell them what I was feeling. I heard everyone speaking, and what they were saying to me and about me, but there was no one there to speak for me. I felt like no one could see or hear me becauseI  couldn’t say the words out loud. It was a very lonely feeling.

Somethings that you need to know. I was always in the person who took care of everything for everyone else around me. It was who I was.  I didn’t try to control everything, but when something needed to get done I would jump in to help.  I never needed anyone for anything, except companionship.  

Unfortunately there is no one that I know of that can take care of things for me. I must correct that statement. There is no one that I trust to take care of things for me; the way that I want things taken care of. It is my fault for not allowing people to take care of things for me long before this happened. Gee, I guess that does make me sound like a control freak, huh?!  Yes, that it does.  I admit it.

After almost another year, and many headaches later, we found the cause: I had an AVM, an Arterial Venous Malformation, in my brain. It was very small. I later learned that thes mall ones are normally fatal because they bleed and are not easily found.  In June 2003, the surgeons had to remove the AVM before I had another bleed.  The surgery went well. I am walking cautiously with assistance, and my speech still affected, but no one else can really notice. The vision has not returned.  

The most awful thing about “this happening to me” is that it didn’t have to.
I know that I am not alone and there are others that have suffered/survived this thing called a “bleed”. But that doesn’t matter to me, not really. What does concern me is that there are so many others out there that will have to go through the same thing! I feel iti s so important for me to get people to hear my story and learn the facts that are not advertised on TV, or in magazines.

The facts that are presented everywhere are: Hemorrhagic stroke is usually associated with high blood pressure. A high BP stresses the arterywalls until they break.

Another cause of hemorrhagic stroke is an aneurysm. An aneurism is a weak spot in an artery wall that eventually bursts because of the pressure of the blood circulating through the affected artery. This is a known risk factor that people are constantly reminded to watch for. And, aneurysms do run in families.

I didn’t have these conditions. Ironically, my blood pressure has always been low. ...Very low. I was not at risk.

My headaches were bad for over a year. I complained. I went to the doctor. I even went to a neurologist. The doctors never checked me for this.They never even mentioned the word malformation. They never said anything except that I was having migraines. They wanted me to take medication. Most of the medications that are prescribed for women with migraines contain aspirin, or there non-steroidal anti-inflammatory agents. I paid them for their sage advice then left with my pain. I did not take the pills. I never even filled the prescriptions.
......................................
Other people will suffer because they will have no idea that they are at risk for an AVM. No one is screaming it from the rooftops! Why not? People should be told!
Well, I am telling people: if you have headaches do something about it. If anyone in your family also suffers from them, get it checked out!
There is no other activity that is known to protect or cause a bleed.

These were the guys that saved me:
Sean D. Lavine, M.D.
E. Sander Connolly, M.D.
Guy M. McKhann, M.D.

Pat Miller's Story:

Pat Miller, had a couple of TIAs (Trans ischemic attacks) laughed them all off and then had, as she calls it a whopper. She was nauseous and had a monster headache. She could not speak, was dropping things and was dragging the left side of her body. Pat made a classic mistake that a lot of us make, she called the Doctor and no one got back to her for 6 days. After the six days her husband admitted her to the Hospital and then on the seventh day, had an MRI and she was told she had a stroke, an Ischemic stroke. She was also told that one of her carotid arteries was 100% blocked. She readily admits she was depressed and had the poor me syndrome, then found her way to accepting it and being happy. For 8 months in a hospital rehab 2x's a week for speech, physical therapy and occupational therapy. When Pat got home, she had a lot left to deal with, completely on her own. She never gave up and kept at it. She has this saying “go for broke, when it comes to stroke”. She would only allow 15 minutes for what she calls a pity party a day and the always focused on working hard to get as much back as possible. Times alone were difficult but she thought that she was still alive and that was much better than the alternative. Initially Pat's entire left side was affected was aphasic and was able to do simple things when she got home.

Pat continued at home, she could not remember things, could not do things like count change and her finger dexterity was still not working, but had made significant progress with her limbs. Pat came home with aphasia. The most difficult part of aphasia for Pat, was putting words together. The other hard part of aphasia for Pat was, the telephone. She would do things like practice making change for when she went to the store. She worked hard on her memory by writing things down and using that for her memory until she got it to come back. She practiced every day with work books for her aphasia and doing things like counting change and used her checkbook as a back up. She worked hard on her memory to remember important things like appointments with her Doctor.

Pat is very proud of everything she accomplished on her own, as a party of one, she never quit. She found that asking for it to be given to her and given quick did not work. So she worked everything she could on her own. Today, talking to Pat, you may not even be able to tell that she had aphasia and she is still working on just the fine motor skills in the fingers of one hand. Now 65, Pat has a tee shirt she proudly wears that says alive at 65. Pat also is a stroke advisor and running a support group in Texas. We wish Pat more continued success. Pat always remains a positive trooper

Angie Kyle's Story

Hi....my name is Angie Kyle. I am a 25 year old mother of 3 children ages 5 and under. On May 27, 2006 my husband Jesse tried to wake me and got a poor response. I needed to use the restroom but could not move to get up. I was able to talk, but the left side of my face drooped some. Jesse called his mother, who came over right away. Once they knew something was very wrong, Jesse called the paramedics. Unfortunately the crew that showed up was not a good one. One man picked me up out of my bed (hurting me), asked my mother-in-law if I was a "drama queen, "and later carried me out of the house (never putting me on a stretcher) while telling my husband and his mom that I just simply had postpartum depression. Once I was finally diagnosed, they found out a blood clot had formed in my heart and caused the stroke after traveling. Imagine everyone's amazement, I was only 24 years old! After spending time in I.C.U. and the cardiac unit, I was transferred to the rehab unit in June. I spent much time doing physical, speech and occupational therapies with an excellent team of therapists. I got to go home on my husband's 27th birthday on August 4th,2006. It was wonderful rejoining my husband & kids after 2 months in the hospital. Today, I continue physical therapy to work on strengthening my left leg more, but the occupational therapy has been canceled due to having no major changes. I have been told I will likely never get function in my arm/hand. Although I have accepted it, this saddens me very much. It is extremely tough dealing with kids, diapers, & every day life when only one hand functions. I keep praying for a miracle, but continue to wait for it to happen.