Left Neglect Support and Information

My husband had a massive stroke and brain surgery to remove and AVM in July.  He has regained all of his strength and is moving ahead cognitively but his left neglect remains.  He is making progress with vision therapy and my work as a teacher has helped us to ramp up his neglect therapy.  Yet we have not met anyone at the U of W Brain Injury Clinic or at any of our other vision or therapy appointments who knows anyone with left neglect.  We need someone to talk to for support.  Is there a forum or support system for people with left neglect?  We have asked so many doctors for help with this but we have not made any progress.

[dfskeens]

what do you mean by left neglect, my mom is still in the hospital from a massive bleed into the cerebellum from an AVM rupture. It has been removed as well as the blood clot from the bleed, she is able to move all of her limbs, but the doctors think she may have some issues with balance and coordination on the left side. Is this the same thing you are talking about.

[promom]

I eas also diagnosed with left neglect following a stroke on 12-5-05. In speech therapy in the hosp., we did a lot of scanning exercises,such as word searches. It seems to be a little betternow I just have to be really aware and focus while reading, etc. hope this helps

[Rajool]

left neglect sometimes is exaggerated because OF NEGATIVE ANSWERS repeated more than often & as you put it

"Yet we have not met anyone at the U of W Brain Injury Clinic or at any of our other vision or therapy appointments who knows anyone with left neglect. We need someone to talk to for support. Is there a forum or support system for people with left neglect? We have asked so many doctors for help with this but we have not made any progress."


definately one can solve problem if one is able to reintegrate & co operate two hemispheres once again.

may be you find answer in

www.brainstrokes.com

rajool

[beanscarnahan]

You now know someone with left neglect.  I always called it homonymous hemianopsia.  In 1959, when I was 8 an AVM in the right occipital lobe bled for who knows how long.  Then I had a massive seizure and was in a coma for a few days.  I remember going home and back to school.  Then tests, bad tests, then brain surgery.  They told me some vision was lost but may return.  It never did.  I drove for years not knowing  shouldn't.  I never had any therapy until recently.  I have fallen and dislocated my right thumb three times.  

I worked as a legal assistant and paralegal for over 35 years.  I am very intelligent, and made up my own ways to get through.  Life and mostly stupid ignorant people who laughed or looked at me like an alien made life hard.  Not anymore because I am happy so don't care what anyone thinks.  I hid what I did not intellectually know about from almost everyone until I lost my driver license and had to reveal these disabilities.  So, the State where I worked revoked my driver license on a doctor's say so, then said they could not offer me services for visually impaired because I am not 'legally blind"; but the same state pushed me out of my job when I lost my leave time because I could not get to work because they revoked my license.

I lived 35 miles from work, but 9 miles in the country and far from civilization.  Fair?  On top of struggling more as I got olde, and becoming a widow way too early, I had to fight for everything. No one knew anything about my left neglect.  I learned only last week it is now referred to as left neglect.  Last, the same state denied me disabilty benefits through the long term disability insurance program.  After two years paying me, they took it away saying I am mentally ill ONLY and a MALINGERER.

Thanks
Irene Carnahan

[Glynie]

My husband suffered a stroke 4 years ago and now has left side neglect. Each morning when he wakes up the symptoms are far worse - his left vision has shut down, his left hand is claw like and his balance is dreadful. Does anyone else have the same problem? Have you found anything that helps?

This morning my husband was so distraught about these symptoms, it took considerable amount of time to calm him down. Of course this sort of anxiety makes the problem even worse. Any suggestions