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Neurologist Speaks at My Stroke Support Group


HostTracy

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Tonight I went to a special stroke support meeting where a stroke trained Neurolgist was our guest speaker. Even after all I have read and been through it was really an enlightening experience. As I listened to some statistics it made me feel so sad inside. I truly wanted to cry for myself and the many many thousands that experience stroke each year. That doesn't even include the many many thousands who are just affected by someone they know or love having a stroke. Did you know that 795,000 Americans will have a new or recurrent stroke this year. This only includes Americans!!!! Stroke is the #5 cause of death in the US, killing more than 133,000 per year. That is 1 in 20 deaths. More than 690,000 per year of US strokes are  caused when a clot cuts off blood flow to a part of the brain. IV-alteplase can be administered in select patients within 4.5 hours of stroke onset. Mechanical thrombectomy (much newer and the newest research and procedure) can be performed up to 24 hours after stroke begins in select patients. Learn and share the warning signs of strokes (not all but most kinds fit this). Spot a stroke F.A.S.T. F~face drooping...A~arm weakness...S~speech difficulty...T~time to call 911. Don't wait remember the T.

 

I encourage you to visit www.stroke.org and click Menu and then Understand Stroke. Be sure to open all the blue subjects with arrows beside them and refresh what you probably have read before. Even though, it is still staggering. Like I said before these statistics are only for the US. Well I know so many of you who are from other countries. The magnitude of this realization is unexplainable for me. The impact is mind blowing. In the US, stroke is #5 cause of death and #1 cause of long term disability. Speechless.

 

I had several questions for the Neurologist concerning my own type of stroke in the posterior region of brain blood flow. I had a cerebellar stroke (2% of all strokes and probably less % for mine which was bilateral). Just as I have found within the medical community the cerebellum is the least known about part of the brain. For more than 20 years there has been much research into the higher learning affects cerebellar damage can cause. I was diagnosed with Cerebellar Cognitive Affective Syndrome during my second year post stroke by my Neuropsychologist. This syndrome is a much studied and debated subject. Many physicians are either unaware of new findings or fail to accept and follow the progression of research. This makes it really difficult for someone like me to get consistent up to date care...the Neurologist acknowledged my concern as truth. I was emotionally overwhelmed at the moment. Validation is life changing sometimes for a stroke survivor. I personally thanked him after the seminar and he gave me some Medical contacts that could be truly beneficial for my issues and background. This was a most informative, and truthfully enlightening seminar. I just had to share.

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Tracy:

 

I am glad you had informative enlightening seminar. all these statistics & cures doesn't mean much to me, I used to get upset initially they could have done something to reverse damage of the a stroke, now this is my life & I need to learn how to play cards dealt to me with maximum joy so that people sharing journey  with me not regret having me around is my motto.

 

everybody is different & we all deal life differently.

 

Asha

 

 

 

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I completely respect that Asha. It was positive for me to get positive feedback from this Neurologist. It feels good to have better answers than I have had before. With my type of stroke being just 2% of strokes today you can get truly conflicting information due to this part of the brain and brain stroke being studied the least. It was positive to know there is more research being done. Not just for me but for all those with posterior circulation strokes. Better knowledge means sooner and better options for rehabilitation. My need for better answers is not just for me but for those like me as well. All I can do is learn how to play cards dealt to me since I never had the options for the time sensitive treatment having not been diagnosed when I was rushed to the hospital but 2 months later when my PCP was shocked by my very abnormal reflexes and sent me quickly to a Neurologist. The Neurologist last night said it's time the neurological field get serious about cerebellum study and that was such a great thing to hear. It could help so many people in the future. Thank you so much for your opinion.

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OMG Tracy, you were given a gift!!

I recall finding my neuro and having him tell me about my stroke,my brain,me.

 

Well I did not get any medical help, I had none of the FAST only balance problems,visual problems, just like now. No one out there knows or talks about stroke correctly. And so yes perhaps if I had better control of all those health problems,would I still have had a stroke? 

Look, so many still having strokes,what does that say?

For me, that guilt is gone. I believe in some things just gonna be.

 

Shame is useless. And validation is the perfect gift. More research about strokes is needed.

 

I am going to have another MRI to see my brain now. What can be done now?

At least understand how I got here, or what to do. my job is live with it.

 

I know who I am makes a difference. I believe in that blue ribbon group.

I do not need to apologise for my survival or earn approval or love. I am the one who gets to decide if I am still happy with people in my life.

But that is the American Irish core in me to not take arranged relationships,not even medical ones.

 

You had a fantastic gift. I am pleased for you.

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