TBI Treatment: Helena Part Five
Support – family, friends, church – is a critical element to recovery. Yet, love and care is not enough. Recovery requires professional TBI treatment, or the equivalent, to enable a brain to reacquire the knowledge, the neural connections. As can be expected, getting TBI treatment was a struggle for Helena. While her educational and professional achievements might make it reasonable for her to arrange for her TBI treatment on her own, the brain injury materially impacts a survivor’s ability to be “proactive.”
The part that was the very hardest, and I would say to anyone who has, who has a brain injury, is that you have to be very, very proactive. You have to have someone being proactive in your life, because when the neurosurgeon has done his surgery he’s done. When they’ve released you from rehab, you know, it’s like go have a good life.
I thought something terrible is missing: I have absolutely nowhere to go with my life. I don’t know what I’m supposed to do.
Like most severe brain injury survivors, she did some physical, occupational and speech therapy as TBI treatment.
In physical therapy, and I think I had that three times a week for a month or so, that was still walking up and down the stairs and pushing things with my legs, trying to balance on a balance wheel and throw basketballs at the same time, and I said, I never could’ve done that anyway, why are you torturing me this way?
No. 1 the nurses, when I was in the hospital, were the most fantastic part of my recovery, and then after I got out of the hospital, the physical therapists. They really cared about how I was doing, and one day I got so nauseated doing something so they, they called my neurosurgeon to make sure that I wasn’t having some sort of reaction.
The doctor they should have called was either a neurootologist (balance specialist) or neuroopthamologist (vision specialist) for her TBI treatment. It wasn’t her neurosurgery that was causing her nausea. Her nausea was likely caused by something to do with how her eyes were focusing, especially when her head was moving (functions controlled by the vestibular system.) See http://vestibulardisorder.com Helena continues;
So that was very caring, but it seemed like there was this huge area that no one was giving me any pointers and I didn’t know the questions to ask. So, and again it was the brain injury support group. Because it was over Christmas the doctors weren’t regular. The rehab doctor, I saw I think three different ones. So there was care but there wasn’t that kind of continuity of care.
The neuropsychologist never came to see me in the hospital, and I didn’t know a neuropsychologist was supposed to. There were a lot of things I just didn’t know what was supposed to have happened.
So the first time I came to the traumatic brain injury meeting I said “it’s like everybody’s, they’ve just dropped me at home and said go have a good life”.
One of our people that meets with us there, she has a sister with a brain injury, well she is a neuropsychomotrist. She does the measuring for a neuropsychologist. She said: “I know something you need.”
I went to my family physician, and he sat me down and he said: “What is it you think you need?”
And that was the first person who really listened to me but the doctor said, you just wait for six months. Just don’t worry about anything until six months out. Well six months is a long time when you have double vision and you’re falling on the ice all the time.
So I got in to see a neuropsychologist. Originally the appointment was like four months out. This is all me doing this; forging my own path, and it really pissed me off. So I called my rehab doctor and he said, I can get you in faster. So then within a week I had an appointment.
Helena is a woman with two master’s degrees, one of those in counseling. She fumbled her way through and did get some help, but largely because of the fortuitous circumstance of the right person at a TBI support group. If it is so hard for such a woman to be “proactive”, how can we realistically expect more severely injured people to get the care they need and TBI treatment. It is not just a matter of the TBI treatment, but managing the care. The only realistic solution is for professional case management, in each coma case. For more on case management in a TBI case, see http://brainanatomyguide.com