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Struggling with Stroke Recovery
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Frog421 posted:
I suffered a brain bleed and stroke jsut prior to Christmas, 2011, and I aam still struggling with recovery. I continue to have chronic headaches, trouble to speech, memory, language, balance, walking with foot drag, and emotional changes and shifts. I feel like someone has hit the delete button on my life and filled it with empty spaces and blanks. When will I start seeing improvements and changes that are positive and start to regain my life back, Right now I am left with seizures, pain, a list of can't do, and my independence feels like it has been ripped from me.
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Richard C Senelick, MD responded:
I am sorry to hear that you are having so many problems after your stroke. Adjusting to a new disability is not an easy thing. I always tell patients that their rehabilitation will be the most difficult thing that they will ever do. Everyone's recovery is different and proceeds at a very different pace. Without knowing the details of you situation I will make some general suggestions.

1. If you went through rehabilitation, conatct the rehabiliation doctor or hospital and have a re-evaluation to see what else can be done at this point. If they believe you are at a plateau, get a second opinion.

2. Find a stroke support group in your area. People who have had a stroke and their families are the best resource for dealing with residual problems. Do not underestimate the power of support from your peers. Overcome that first step and go to a meeting. The American Stroke Association has a list of support groups.

3. Find a psychologist or counselor who works with stroke survivors ( ask the local rehabilitation hospital) so you can work on adjusting to your disability.

4. Make a list of your strengths and weaknesses. We tend to focus on our weaknesses and forget our strengths. I am not saying that you should ignore the areas you want to improve, but also taking advantage of your strengths can improve everything else.

5. Are you seeing a neurologist for your headaches? There are lots of things to try. You need to find someone creative who might also be willing to try medications for your memory, emotional shifts and mood.

It takes a team to recover and most patients end up with their primary care doctor having to manage all the different areas. Get the team back involved in your care.

Good Luck
After your stroke you may be experiencing a new normal, but remember what George Eliot said- It is never too late to be what you might have been. You still can achieve new goals.
 
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Nicole_H responded:
Hello,[br>I understand your frustration all too well...I had an emergency brain surgery in 2008 for a couple of bleeds in the brain stem and pons due to a Cavernous Angioma. I had never heard of that name until I was rushed to the NICU...Anyway, to make a long story short, I consider my surgery and the outcome to be a miracle, even if I am and may not ever be 100% as I was. What I experience to this day: The freezing sensation on my right side, mainly in my foot. It actually is painfull at times, I often find myself massaging it, to bring some "life" into it. I wear socks in bed, even in the summer, in order to at least try to keep it warm. I do have a bit of tingling in my right fingers, almost constant...My energy level is not what it used to be. I tire easily and that was pretty difficult to accept. I may get up early for work but I can't make it passed 9pm and that is a stretch... I was told by the neurosurgeon that it could improve, or it would not. No specific time frame either...The guy saved my life. his knowledge is incredible, but even for someone like him, our brain still holds some mystery. I can tell you this: time is one of the keys. I had double vision after the surgery. Just as I was ready to wear a patch, it went away overnight! I had to "talk" and watch my right leg and foot in order to go up a sidewalk, go up the stairs, pretty much any upward motion. I walked as much as I could, when tired, my right leg would start falling behind...I would, once agin, "talk" to it. This was the only thing I could do when in motion. No more thinking of whatever else, just focus on my right leg...Then one day, about 2 years post surgery, I found myself thinking about something totally different when I was walking!!! From then on, I have not needed to "talk" to my leg...Do not despair, think of what was done to your brain. I often describe it as a tree that got a branch or two chopped off...They will grow back, just not in the same place. They will be fragile at first, but will strenghten with time...I was 46 when this happened...If I may say: Educate yourself about what happened as much as you can, Doctors are not always equipped to deal with the emotional toll that such an event takes. If you can, find a support group, a mentor, any kind of support from people who know and understand what you are dealing with.[br>Sorry, this is very long...I just hope it will help a little, and I wish you the very best![br>Nicole
 
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dumpsterqueenky replied to Nicole_H's response:
hi my mother had a stroke around the pons and mid brain, on feburary 13th 2013. she still has not opend her eyes. yesterday morning her left eye which still has the yellow sac at the corner, shed a blood tear. i believe she is in a coma? when i walk in the room and say hello mom i love you, she does turn her head in my direction.
 
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ekunina replied to dumpsterqueenky's response:
hello. same w/my mom but she had a stroke in august '12. it's amazing what the brain and body does after a stroke and all the affects that occur. i was very happy to hear that your mom turned her head your way upon hearing your voice. that's really a good sign. i'm certain your presence brings her comfort. maybe you might try brining in music for her too. my mom responded well to music. in fact, she moved her hands and feet to keep time w/the music, as well as smile and having a cheery face. how's your mom now? it's been 7 months now and mom can walk and eat, but she has a pick tube in her tummy. she has a hard time remembering what happened an hour ago, yesterday, a week ago. it hurts she can't really converse like she once did. everyday, i keep praying her mind will repair itself and she can carry on conversations. -- all my best to you and your mom and family.
 
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dumpsterqueenky replied to ekunina's response:
she still has not opend her eyes. she moves a lot more but when you ask her to move something she dosnt, she did a couple of times for me. i believe she might have been awake. she has a trake and feeding tube in. she breaths 96% on her own. the doctors keep wanting us to Pull the plug...the doctor actually told my dad he could give her a couple shots of morphine and in a couple days she would die. when we first arrived at our local hospital she was there almost 2 hourse before being transported to the teaching hospital. they put a drain in her head, that after a couple of days said it somehow worked itself loose. and since her swelling has been low they did not put it back in. but since it worked itsself loose. her left eye has been much worse with the yellow sac and swelling and redness. she actually shed a blood tear one morning. i think they may b trying to cover up something with the drain thing falling out. i do take her music, and my dad is with her pretty much 24 7. working her limbs. brushing her hair out. she has long beautiful hair. the nurses put it in pig tail braids and dad pulled em straight up beside her head and said they were her antannas so she could get better reception talking to god....lol . best wishes for your family. thoughts and prayers from me to yall


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Richard C. Senelick M.D. is a physician specializing in both neurology and the subspecialty of neurorehabilitation. He did his undergraduate and medic...More

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