Tag Archives: Acquired Brain Injury

Doctor #WotW #PoCoLo

So I had two doctor’s appointments this week. First, like I said last Monday, I was seeing my GP on Wednesday regarding my mild motor skills impairments. A little explanation is in order. I have always had fine and gross motor skills impairments. Since they are so mild, they have always seemed practically non-existent in the face of the major disability of my blindness. As a child, I held my parents’ hand till I was at least twelve. This was however seen as a lack of self-confidence. I did use my white cane when prompted, but since I had trouble accepting my deterioratng vision, I apparently chose dependence on others over the white cane. When I did use it though, I often used it as a walking stick.

Now I’m no longer ashamed of the white cane. I in fact prefer to have it with me even if I walk sighted guide, because then at least people will see I’m blind. Still, despite having had countless orientation and mobility training sessions, I still cannot seem to use the white cane in its proper way. Even so, I feel very unsteady when walking independently. I would love to learn to improve, because, even though there is no route in our village I’d like to learn to walk without anyone accompanying me, I’d love to be able to walk without holding onto someone’s arm. That would enable me to go to events on my own by accessible transportation, which I now avoid due to not wanting to ask strangers to be my guide.

As for my fine motor skills impairments, I cannot eat neatly no matter how hard I try. I find this terribly embarrassing. I also struggle with preparing my own breakfast, pouring myself drinks and other skills that require the use of both hands. I can perform tasks that require just my right hand just fine and I can use my left hand for support, but activities that require coordinating both hands, just don’t work without adaptations. I’m curious to know whether such adaptations exist.

My GP looked up what seemed to have been a letter written by my previous GP in the institution. It said that I was born prematurely (correct), had a stroke as a baby (not correct, it was a brain bleed) and developed hydrocephalus as a result (correct). The resulting impairments are diagnosable as acquired brain injury. I seem to have read that when a person sustains a brain injury before age one year (or three in some countries), it’s not diagnosed as an ABI. The correct diagnosis, well, I don’t know. Motor impairments are, or so Dr. Google tells me, often diagnosed as cerebral palsy, but then they have to be severe enough, which I doubt mine are. I didn’t question the doctor though, although the confusing diagnosis did frustrate me more than I’d hoped it would. After all, my intention was to ask about treatment options.

The doctor told me that, if I’ve been stable for over two years, there’s no hope for neurological improvement. This timeframe is longer in children, but since I’m now 31, I’ll pretty much have to learn to live with my impairments. Still, I might benefit from occupational therapy and possibly a little physical therapy to help me learn to use adaptations and learn compensatory strategies. The doctor is going to contact the nearest rehabilitation center to ask whether an occupational therapist can take me on. My blindness may be an issue though, in which case I’ll need to see an occupational therapist at the blindness agency. They don’t often know acquired brain injury though. Seeing both is not an option insurance-wise.

I also saw the mental health agency’s general doctor on Thursday. The physical health screening with the nurse and all the things I didn’t know about my childhood conditions, were what had prompted me to see my GP. I discussed the GP visit for a bit. Then we went over the lab work the doctor had ordered. Everything was within the normal range except for one thing, creatinine, which was a little high. The most likely reason for this is that I don’t drink enough water.

With these two appointments and my having been having them on my mind all week, my word of the week is going to be “doctor”.

The Reading Residence
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“Münchausen by Modem”?

i’ve been thinking of a few issues lately, and I want a way to write them out. Particularly, I’ve been thinking about various topics surrndoung my various diagnoses. I’ve only got a few diagnoses – not nearly as many as my Facebook group memberships would suggest -, but I’ve had many off-the-record labels.

Firstly, I have a diagnosis of Asperger’s or autism spectrum disorder. My parents say the diagnostician just gave me thsi label in order to get me services. My former therapist in the old city institution doubted my diagnosis too, thinking my theory of mind is too good for ASD. Now that whole theory-of-mind thing is controversial, but well. This therapist wondered whether a more correct diagnosis would be acquired brain injury, because I had a brain bleed as a newborn which resulted in hydrocephalus. I used this off-the-record label to gain access to some groups for brain injury and am finding them very supportive. (Yes, I did explain my situation in each of the groups and made sure I wasn’t seen as an intruder.) I’ve asked people in the autism groups for their opinion on the brain injury/autsim link, and 90% replied that autism is purely genetic. Kind fo shortsighted in my opinion.

I’ve also been thinking about my mild but slightly worsening motor deficits. I always self-identified as dyspraxic but have recently gotten to wonder what my diagnosis was as a child. I saw a physiatrist (physical disabilities doctor) until around age eight and have many of the syptooms and complications of mild cerebral palsy, including a significant left/right disparity, the need for a cast on my left foot at age five and scoliosis. These issues do not seem to happen to dyspraxics.

In a way, diagnosis shouldn’t matter. I know this. I worry sometimes that I’m only seeking for diagnoses so that I can collect an impressive list of labels. I remember about ten years ago reading something about “Münchausen by Modem”, ie. the tendency of some people to join Internet groups for diseases they don’t have. Am I a classic case of this? I’m not sure, but some people think so. At least, the people in the Dutch DID organization thought so. I guess it’s about time I work on developing a disorder-free sense of self.