My name is Daniel Gu. On Sept 22 of 2012, 3 months before turning 41, I suffered a brainstem stroke. My left side was almost totally paralyzed, including my vocal chords. I could not sit up. I could not walk. I could only lie in bed hissing out some words only my wife Hong or my mom could barely understand.
I never thought a stroke could happen to me, particularly at my age. I was active, eating right and had none of the risk factors usually associated with a stroke. My career was thriving as the youngest CIO in the banking industry. My passion for photography was deeply satisfying. And my life with my wonderful wife and daughters was full of joy. I was a happy and professionally successful man. On that day in September, within 3 minutes, everything I had worked so hard to earn evaporated.
My family was thrown into a chaos. My wife Hong went onto the Internet to look for information. She was overwhelmed with thousands of pages of Google search results. She could not find the useful information she needed in all that chaos. She needed hope and answers that would help her form a plan of what to do while I was in the hospital and when I went home and she needed them quickly.
Most of my doctors were discouraging. They warned Hong that I might never standup or talk normally again – Brainstem strokes have a fatality rate of 50%. Those who do not die are often left with what is called “locked-in syndrome”. If someone is “locked-in” they may be able to move little besides their eyes. Brainstem strokes are profoundly serious. Hong and I were taught to fear. We were not taught to hope or to believe that what we did would make a much of a difference.
In our darkest moments, we found 2 fellow survivors who saved us. One was a tax expert who suffered a devastating brainstem stroke and was able to go back to work 4 months later with the help of the remarkable treatment provided by an acupuncturist in Los Angeles, whom I later went to see myself. The other was Alison Shapiro whom I met online after Hong discovered a link to Alison’s recovery teaching after days of Hong’s ongoing desperate search through the seemingly endless and mostly irrelevant pages of information from Google.
Alison suffered 2 brain stem strokes in 2002. Her passion, post stroke, is teaching other survivors how to think about and engage deeply in their own recoveries. Alison had created several videos and fortunately for us, Hong found one of them. On the video Alison looked fabulous. I wrote Alison an email and she responded and began to coach me. Alison became my mentor.
Recovery after discharge is often hard. We are left to ourselves without knowing what to expect and where to start. Alison has made the recovery process a lot easier for me. Whenever I have concerns about my recovery and my life post stroke, she is always ready to provide information, coaching, and help me re-examine my assumptions and limiting beliefs..
As I recovered, I realized that I had benefitted so much from peer coaching, learning about recovery and learning how to work with myself that I wanted to find a way to make that benefit available to many more survivors. I learned that most questions a survivor will have in the recovery process are not medical but are related to how to live and work with ourselves post stroke. A survivor has to learn self engagement to maximize the potential of neuroplasticity. What Alison taught me works.
According to the National Stroke Association, there are 6.5 million stroke survivors in the US. If we include caregivers and family members, people who are affected by stroke exceed 20 million. Only a handful will get some post discharge support. Meanwhile, peer to peer support can be perfect for this kind of support. What Alison did for me could help many more people. There is a huge potential to make a big difference.
Together Hong and I decided to launch strokefocus. Strokefocus is a social media website for stroke survivors, their caregivers and their care providers. It is also a library of information and an education platform. On strokefocus it is possible to engage with others and learn what we need to know. Hong and I want this network to be a place where survivors, caregivers and healthcare professionals can easily connect, share ideas and teach each other.
Strokefocus has been growing. In the process, we are becoming connected to so many like-minded professionals who want to make a difference, including Our Heart Speaks. We believe our collective efforts count. We believe that what we go through and share will make a big difference to providing better stroke care in the future. Unexpected events happen in our lives. Yet, we can connect with each other, share our strength and bring different perspectives to make this world better.