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Mary Cookie Simpson

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Marie Cookie Simpson

My CPS is caused by hemorrhagic stroke on oct. 3 1994. CPS began from the beginning but in subtle ways. ie… ballooning feeling of knee… general fuzziness of affected side. I look back on what I thought was stroke effects at the time that i thought all strokees encountered but 18 years later i know to be CPS effects and not just stroke affects.

I would also like to add that it was in 1997 i first got online and noticed that there was not anyone specifically paying attention to post stroke nerve pain. There were groups for aphasia and other stroke affects. I began to gather all those strokees together who  seemed to need support and information about what Central Pain Syndrome (only one of the many terms it was called back then.)  Then in 2000 we expanded and became an alliance of for whomever ended up with CPS from all other conditions. CPS is not rare as it was thought in those days. We all just needed to get on the same page of calling it by the same term…..Central Pain Syndrome.

I am so very proud of those working so hard on continuing the fight to bring CPS out to the world. Bless you on your journey.


2 Comments

  1. Deborah Richardson says:

    My name is Deborah Richardson. I had two hemorrhagic strokes in June of 2002. The strokes were five days apart, as the first one was missed…told I had a migraine and was sent home to bleed for five more days. I found Mary and the Central Pain Group about two years later. Mary thank you for your kindness and understanding all those years ago. Over the course of these last eleven years like so many I have tried everything, including a brain stimulator. Nothing really works and I find myself getting worse and worse each day. I was 55 at the time of my strokes. I wish I could find some eloquent way of describing the pain, but nothing can describe the 24/7 hell we all live through. I am so tired and weary…eleven years just seems like too much and as I age each day gets harder. I now live with my daughter and her blended family. It is so difficult, but I have no other options. Like so many I took ill when I was still working and SSDI is hardly enough for anyone to live on. I had a completely independent full life before my strokes. But now I find my life has become very narrow. The loses too many to list. Depression is a daily battle. Finding reasons to go on becomes more and more difficult. CPS is so much more thn just pain. It is a host of many issues. We may look normal, but I feel far from normal. I try each day to remember the ” feling” of normal. How it all felt before the strokes. I watch people walk, and laugh and I think why can’t I remember that ” feeling”. So…here I am again…many years later writing again. Holding onto the many people who share in this suffering and torture. I pray each day for some miracle…was told by a friend that if I wited long enough something would be found to help….I am still waiting. Although I know no one on this site, I feel compassion and caring for all who suffer and fight the daily war.
    Deborah

  2. I didn’t consider such a dramatic change would take place this rapidly. You have to be extremely cautious of any over the counter pill that boast to be a “miracle pill.

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