I’ve been interested in illnesses of the brain since Robert and Emme were diagnosed, but today was the first time that I found a group that could help me understand my own as well as Ron’s brain injuries.
Brain injuries happen for many different reasons besides stroke or TIA – accidents, illnesses like tumors and encephalitis, aneurysms, sports-related injuries.
Most of the people in the room had brain injuries for reasons other than stroke. Even so, I could relate to so many of their experiences.
Examples: the day after attending a conference, or any event that piles on too many stimuli, a couple of the participants said they were exhausted, that it felt like they had the flu.
They said that clutter or noise can be overwhelming, that it takes longer to do anything, even mechanical activities like brushing your teeth, that it requires five times as much effort for an injured brain to move muscles and think through a task.
Someone recommended keeping a list on the wall, or a grid for bill-paying. Others recommended books or DVDs.
A couple of participants felt that HIPPA has created problems for brain-injured people, in that it’s impossible to distribute information on support groups in the community unless specifically asked. Foolish!
One of the difficulties in finding long-term treatment and support is that brain-injured people are stigmatized in our society.
It seems from some of the experiences that even medical professionals have little understanding of how long it takes to recover and the best ways to go about it.
All in all, an enlightening and encouraging two hours. I’m looking forward to the next one and hope Ron can attend as well.