Hello world!

I am the President & CEO of The Stroke Network, http://www.strokenetwork.org/.  We are a 501(c)3 non-profit organization.  We have existed on the Internet, since February of 1996.  Our mission is to provide on-line stroke support and information.  We were the first on-line stroke support website on the Internet. 

My last picture  This is one of the last good pictures of me before my stroke.  I am definitely not 36 anymore but this picture has significant sentimental meaning to me.  This was the end of an era, a time when me and my family enjoyed our simple life and laughed easily.  This was when I did not mind getting my picture taken. 

Anyway, I was an aerospace engineer for a major corporation, Martin Marietta, until I had a massive brainstem stroke in June of 1994 at age 36.  My stroke damaged nine of the 12 cranial nerves, which affected most of the motor skills.  I am now effectively quadriplegic and cannot talk.  Luckily, none of my cognitive skills are damaged. 

My situation has and often can be a nightmare for me.  I consider my circumstances healthier than most able-bodied people because I have been forced to leave the corporate battleground.  No more do I face the daily stresses and headaches that corporate life can bring. 

I have developed a close and loving relationship with God.   I tend to focus on God’s plan for me and have started an on-line stroke support community for all of those that cannot attend a local stroke support group.  To combat the deep seated feelings that tend to rise I keep myself extremely busy.  I believe that God has a plan for me and I am living it with His help.  I definitely could not do what I do and have done without Him guiding me every step of the way. 

 I type by using an infrared headpointer to move the cursor and can click the mouse with my finger.  I use an on-screen keyboard to type.  Without my cognitive skills, my excellent head control to move the cursor and the ability to click just one finger I could have never created my websites or written 99% of the web pages, including founding our non-profit organization. 

 I am truly blessed! 

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8 Responses

  1. wondeful attitude!It was great reading your blog this morning, on mothers day!Thank you very much!Have a very blessed day!
    LOve,
    Susan Sammarco
    Stroke Surivor

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  2. Hi Steve!

    I saw your blog and love it! I have a website of sorts as well and will probably post a link to it. I had a massive left sided ischemic stroke at the age of 5 – I am 42 now. I am paralyzed on the right side and have great difficulty with spastic hemiparesis. I think that your post about recognizing a stroke is wonderful. My stroke was not diagnosed for a month or so after the fact, simply because the doctors apparently didn’t recognize that children can have strokes as well. I was initally diagnosed with post-seizure paralysis from epilepsy. According to my father, I had all the classic signs of stroke – I couldn’t speak, move my right side, and the side of my face drooped -but because I was so young, that diagnosis didn’t even occur to the doctors.

    I too consider myself extremely blessed in that I walk (albeit with much difficulty/brace and forearm crutches) and I talk. I use my left hand for most things (I was originally right-handed)and have some cognitive deficits in the way of short-term memory loss, but I try not to dwell too much on the things that I am unable to do. I focus on what I can do – and then just do it. I have a 12 year old daughter who is my “caregiver” of sorts. Because I am disabled, hopefully she will grow up with an clear understanding of what it is to actually be disabled. She helps me out with little things around the house and understands that mom can’t do everything like other moms can. I take Celebrex for things like bursitis whixh I have in abundance on my right side, baclofen for the spasms, and zonegran to lessen whatever seizure type activity is actually causing the spasms. The meds make me tired so I try to counteract that with eating right (and a little Starbucks every now and then).

    Take care! You have a wonderful site – I lurk mostly but it’s good to know that the support is there!

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  3. Hi Steve,

    What a great site, so much good information. Yes,
    I agree with you about educating our young to
    eat properly and get enough exercise.

    God doesn’t close a door unless He opens a window
    and He certainly opened a big window for you to share
    your knowlege and help others. We also have to thank God for computers as an aid in gettting your word out.

    Keep up the good work!!

    Jackie Stratmeyer

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  4. Hello My name is Jessica and I’m 16 years old. My mother had a stroke about 7 months ago. She is 43 and has always had high blood pressure due to bad eating habits and drug abuse. I’m not sure what the name of the stroke was but I know it was a bleed in her brain stem. Since she had the stroke the whole left side of her body has gone numb and now she only feels a tingling sensation. The doctors she’s been to confirmed that there was no nerve damage and don’t know why this is happening. They’ve perscribed her different medications but none have yet to work. Her speach, walking and sense of balance have also been affected. I know that all of these symptoms come along with the stroke but the thing that is puzzling me is that it seems like she’s getting worse. About a month ago her progress started to slow down and eventually stopped. And now it seems like she’s going backwards. None of the doctors that we’ve been to have an answer. I can’t accept her the way she is now. I need an answer to why she’s getting worse. Please help.

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  5. Steve,
    I loved reading your story. You have come far and accomplished alot.
    I truly enjoyed reading your blessings. You are a gift from God to us. What brillance to start this web site. If is funny how God prepares us. He is preparing us before we even know what is going on. Improvise, Improvise. improvise. Repetition, Repetion, repetion. This is the mantra of the stroke survivors.
    I want to thank you for accomplishing all that you have since your stroke. I want to thank your wife and family for being there with you.
    God is great! I loved the way that your blessings were acknowledged. Fabulous blessings! God works in mysterious ways.
    Thank you again.
    Ruth

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  6. As the last date on these posts is 2009, I hope you still write here, at least occasionally. I administer a blog for my brother, Dalip Singha, who had a stroke about four years ago. My sister (who was alive at the time) and I encouraged him to write his blog as therapy and I continue to add to it as and when I find useful tips. I would like to link this blog to his so resources are shared.
    Thanks
    Rohini
    for Dalip
    http://dlip.wordpress.com/

    Like

    • Rohini, you may link to my blog. Does Dalip need stroke support? Stroke support is prob ably the best therapy a stroke survivor can get. I manage an on-line stroke support group at http://www.strokeboard.net/. We have dozens of forums where he can post questions, make comments or just read what others have written. What is nice is that we are available 24/7. Also, we offer chat and free blogs. We can even translate most languages. The translate icon is at the bottom of the page on our toolbar. Our homepage is at http://www.strokenetwork.org/. Actually, I am President and CEO for The Stroke Network. We are a registered non-profit charity. We have over 9200 registered members from around the world. Anyway, our website also has a toolbar with a translation icon. In fact, all of the pages on our website have a translation icon. Email me at smallory@strokenetwork.org if you are interested.

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