The aftermath of my stroke

Now, hopefully, you know what having a stroke is REALLY like.  It is the worst experience in your life.  I cannot empathize enough how frightening it is what you go through.   Your lifestyle is totally changed forever; in a flash your family is devastated!   If you do not have long-term disability insurance your family is immediately thrown into financial chaos.  Your children no longer have a normal child life.  Forget about having fun family events.  Annual vacations, spontaneous things like playing games with your kids, attending ball games and going out with the family for fast food on Friday nights, etc, will stop.  All enjoyable family events will immediately be forever cancelled.  Forget about things like going to the bathroom in private.  You lose every shred of humility you ever had.  There are so many more nightmares to talk about.  Most of what I should warn you about is too personal and private!  You REALLY do not want to know.

My wife went through it ALL with me.  My company flew her to France and put her in my hotel for over two weeks.  She would visit me in the hospital everyday getting there around 8 am every morning and staying in the hospital with me each day until after 8 pm each night.  Support is absolutely essential after a loved one has a stroke.

Something else I should tell you is that stroke does not just affect you.  Besides your spouse and kids your extended family is also affected; your brothers, sisters, nieces, nephews, mothers, fathers, in-laws and their families all will be affected.  Oh, and you think you have good friends?  At least 99% of stroke survivors have told me that their friends have stopped coming around.  Many will visit you right after the stroke, while you are in the hospital, but be prepared to lose every friend from coming around.  Your friends will not suddenly stop liking you but chances are VERY good that not one will EVER hang out with you again!  It is amazing how quickly your friends will ALL disappear.

Be prepared for an uncontrollable emotional rollercoaster, too.  Your ability to control laughter or crying at inappropriate times will be lost.  Seriously, it is called, emotional lability.   Emotional lability is totally frustrating and can be very embarrassing.  You will learn to hate the powerful lack of control.  Also, severe depression is common and may creep in when you least need this burden.    Depression for stroke survivors can be very dark and can rule every aspect of your life.  You cannot realize how painful depression is unless you have experienced it.

Bottom line is that having a stroke is permanent.  You cannot reverse the effects of stroke.  You must learn to live with the devastating disabilities that it causes.  I apologize for such a lengthy blog but this was my reality.  Millions of people go through similar nightmares.  According to the American Stroke Association, stroke happens to about 780,000 people per year.  About 5,800,000 stroke survivors are alive today.

Stroke cannot be prevented but you can prevent the risk of it.  High blood pressure is the most obvious sign.  Eating a diet that is high in salt can cause the high blood pressure.  Lack of exercise and leading a dormant lifestyle can lead to being overweight and having high blood pressure, too.  Cigarette smoking and excessive drinking of alcohol also increases the risk of stroke.

Go to http://www.StrokeEducation.info/ for information about stroke.  New stroke caregivers should download and print our Stroke Caregivers Handbook at http://www.strokecaregiver.org/handbook.htm.

14 Responses

  1. […] Post stroke – plus 1 day […]

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  2. Well i sure relate to your story. I was in Mich an got to Hospitol that reconised emergency room. Truley changes ones Life i am 7 year post. Pain on my whole right side. Hoping to be refered to University of Michigan Hospitol. Well a bit of humor, Keep our stick on the ice~~ sincerly rob peabody

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  3. Good job in describing how stroke takes everything about your life and changes it. All I can add is, if any of you out there have risk factors or suspect symptoms deal.with them before a stroke. You DON’T want this. It is hell.

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  4. Wow! My mother in law, Is going through this, Oh thank you for Explaining it the way you have, it’s so helpful. Can I ask, is there a calming medication(antidepressant) or supplement that can help her get thru? She us 76, we want her to b comfortable and happy, not anxious and happy.
    Thank you
    Denisemarieis
    720-495-5556

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  5. i am status post rcva ny mind is like a mobius wheel my left hand iis patially numb it cost me my marriage of 20 years and ive never hsd sny therepy brcse 90% of my problrms are in thebrain

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  6. I’m glad you pulled through.that was the scariest thing I’ve ever read. A very good friend of mine had a stroke last night and was air lifed to a hospital 130 miles away.the hospital in my town is small and couldn’t handle such an emergancy.I can’t even imagine what he is goin through.I am a good friend to him and will always be there for him.

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  7. I agree with most of what you said but it seemed to me that one could not do any thing to prevent it .during my whole life l am very moderate. I ate moderatly, my diet is mainly vegetables, very small amounts of meat and sault, plenty of fruits, never smoke, do not drink yet l had amassive stroke that left me paralised

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    • Did you have a stressful life? I have spoken to literally hundreds of stroke survivors about what caused their stroke. Probably 95% of them had no idea but most said they had lots of stress in their life. Was stress possibly a factor? If not, join the millions who don’t know!

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  8. Very well described , , but what next? This is what bother me a lot.It was an agony from the first minute up to now and going on it seems for ever, my second stoke is3.5 years old. The devastation is total, I have lost my job, spent my savings on medications , physical therapy and all the rest, sold my car and my valuable belonging just to keep my family going on. Every night when I try to sleep millions thoughts circle in my head of what to do and how to act. Sorry to bother you with this stuff.

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  9. Steve, You are a fantastic writer and I found your reporting you experience moving. We all have stories to tell and your imparting you story was extraordinary. Do you think writing it down helped your healing? I want to tell you it did put my life in perspective. I had a similar experience being far away from home in a hospital that was not conducive to what I needed and it terrified my staff who were also on the work retreat with me. It affected the whole community where I worked and they suffered along with me. I also wanted to ask you if you knew a Peter Kostoff at Martin Marietta Aerospace? He is a close friend of mine and getting up there in years and a wonderful gentleman who sat by his wife’s side through her coma for many years. He worked there during the years you mentioned and I know the world is a small place. My parents lived in Orlando and we were quite familiar with Martin Marietta and knew several folks who worked there. Your message brought tears to my eyes and hope for a future if I can rise above my fears. I do think we are on this earth for a purpose and each and every hardship has helped me help others. Your reaching out to others after your ordeal is a monumental achievement. I sincerely respect and thank you for your rising above your challenges to help so many thousands of others suffering the consequences of a stroke. I plan on reading your other messages on your blog. Need to do so in spurts so as not to overwhelm my nervous system, which I have come to realize impacts us from the earliest trauma to present day. You are an inspiration to us all.

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    • Thanks for your fantastic feedback! Writing everything down was self-satisfying. My motivation was to show others that there IS life after stroke.

      I did not know Peter but probably knew his face.

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