Lost in stroke land

I am not the same guy that lay down to sleep on july 28th 2014 ; he was confident , fresh from the battle of a  stress filled work day and was very comfortable in his own skin . I awoke to numbness and panic and the knowledge that I was in dangerous territory . I woke my wife and headed to the e.r in a cab and walked into the hospital ;  I  awoke again in a different city with my family gathered around and I was someone else ; the confident warrior had packed his bags and I was alone in a body that was broken and alien ;  it didnt feel the same and the places that I drew on for strength , emotion and stamina were not where I'd left them . I no longer felt like the old me , someone had broken into the place where I'd lived for over 50 years and had stolen all of my stuff , my brain , that traitorous thing had let itself be hijacked , I was sending signals out and they were not getting through . I understand why  my left side stopped working but not why the right side felt so different , why the commands I was sending out were being interupted , sure the right was moving the way it should but it didnt feel the way it always had, my sensations and emotions were no longer in my control , where I would once have dropped something and gotten mad I now cried uncontrollably and had no say over it tension became something I breathed like air , I tasted and felt in my veins , where I once fuelled my determination with anxiety I now cowered in its presence.  I have become intensely aware of fear lately.and throughout this storm of emotion and terror stood the anchor of my former self , my beautiful partner , no stranger to this kind of fear herself , treating me each and every moment of each interminably long day like the familiar old guy she married all those years ago , this is the single greatest gift I have ever received.

Great Read on Dealing with a Stroke Survivor

http://www.brainline.org/content/2011/07/lost-found-what-brain-injury-survivors-want-you-to-know.html

Lost & Found: What Brain Injury Survivors Want You to Know

Comments [353]

Barbara J. Webster, Lash & Associates

I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a “brain fatigue.” It is very difficult and tiring for my brain to think, process, and organize. Fatiguemakes it even harder to think.

My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.

Brain injury rehabilitation takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better.

I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem.

If there is more than one person talking, I may seem uninterested in theconversation. That is because I have trouble following all the different “lines” of discussion. It is exhausting to keep trying to piece it all together. I’m not dumb or rude; my brain is getting overloaded!

If we are talking and I tell you that I need to stop, I need to stop NOW! And it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you.

Try to notice the circumstances if a behavior problem arises. “Behavior problems” are often an indication of my inability to cope with a specific situation and not amental health issue. I may be frustrated, in pain, overtired or there may be too muchconfusion or noise for my brain to filter.

Patience is the best gift you can give me. It allows me to work deliberately and at my own pace, allowing me to rebuild pathways in my brain. Rushing and multi-tasking inhibit cognition.

Please listen to me with patience. Try not to interrupt. Allow me to find my words and follow my thoughts. It will help me rebuild my language skills.

Please have patience with my memory. Know that not remembering does not mean that I don’t care.

Please don’t be condescending or talk to me like I am a child. I’m not stupid, my brain is injured and it doesn’t work as well as it used to. Try to think of me as if my brain were in a cast.

If I seem “rigid,” needing to do tasks the same way all the time; it is because I am retraining my brain. It’s like learning main roads before you can learn the shortcuts. Repeating tasks in the same sequence is a rehabilitation strategy.

If I seem “stuck,” my brain may be stuck in the processing of information. Coaching me, suggesting other options or asking what you can do to help may help me figure it out. Taking over and doing it for me will not be constructive and it will make me feel inadequate. (It may also be an indication that I need to take a break.)

You may not be able to help me do something if helping requires me to frequently interrupt what I am doing to give you directives. I work best on my own, one step at a time and at my own pace.

If I repeat actions, like checking to see if the doors are locked or the stove is turned off, it may seem like I have OCD — obsessive-compulsive disorder — but I may not. It may be that I am having trouble registering what I am doing in my brain. Repetitionsenhance memory. (It can also be a cue that I need to stop and rest.)

If I seem sensitive, it could be emotional lability as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now. Tasks that used to feel “automatic” and take minimal effort, now take much longer, require the implementation of numerous strategies and are huge accomplishments for me.

We need cheerleaders now, as we start over, just like children do when they are growing up. Please help me and encourage all efforts. Please don’t be negative or critical. I am doing the best I can.

Don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. Everything single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without Hope.

Created with the assistance of the "Amazing" Brain Injury Survivor Support Group of Framingham, MA.

Excerpted from Lost & Found: A Survivor's Guide for Reconstructing Life After a Brain Injury by Barbara J. Webster. © 20ll by Lash & Associates Publishing/Training Inc. Used with permission. Click here for more information about the book.

Catch the Signs

This commercial came out recently; it's great because it makes people aware of how fast a stroke can happen and educates people on the steps to take when it does; at the same time if you have had a stroke you can relate to how Phil and I feel every time we see it.  It's a little eery to us.  Phil says it's like being in a crowded elevator and you can't breathe.  It really freaks me out, with a heavy feeling in the pit of my stomach.  It is a good commercial because it grabs your attention....

https://www.youtube.com/watch?v=7mSceRPcvZY

http://www.tipdisease.com/

http://www.heartandstroke.com/

We Will Survive

When one partner suffers a stroke; life is turned upside down, but when you have both partners who have been struck with a serious illness ; it can be a devastating blow 


I was the first one at 47 years of age to suffer with what doctors call a series of thunderclap migraines which resulted in a bleed on the right side of my brain a Cerebral Hemmorage).  After a long series of tests, MRI's, and CT scans, the doctors referred to my "stroke" as "Call Fleming Syndrome"; more info on this later.

The date was November 19, 2011.  I will never forget that day.  

Then on July 29, 2014 my husband Phil at 53 was struck down with a massive stroke which resulted in a bleed in the (Basal Gaglia) more info on this later.  This was a day that dampened what was the beginning of a joyous summer;( we had two sons marry Nick in June and Cory in July) 

This blog will be set up somewhat like a diary starting November 19, 2011 to present day.  We are hoping our story, experiences, fustrations, and how we have had to struggle,  but at the same time still find joy in being together and being alive will help others not only find hope but better understand what a stroke is and steps to take to help avoid one.  Each day  we find new reasons to get up and do it all again.