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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8 thoughts on “Doctor #WotW #PoCoLo

  1. That is quite a week. I really hope that the occupational therapy is approved and someone can help you with this. I cannot imagine the idea of not trying Occupational therapy in hopes it can help some. There always has to be hope that you can improve with these frustrating things.

    Liked by 1 person

  2. “My GP looked up what seemed to have been a letter written by my previous GP in the isntitution. 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.”

    I wondered if the Headway crew would have something, or the counterpart Dutch organisation for brain injuries.

    Occupational therapy + good adaptations.

    Have just read about the Claire Milne Trust – throughout the last 10 years of her life Ms Milne started this charity. And her father, Christopher Milne, worked on a way she could eat functionally and tidily.

    Yes – the three years – edge case on this.

    And neurologists are good people. If the GP does not know the difference between a stroke and a brain bleed/IVG and writes that down!

    What I was thinking about when it came to neurology – they have lots of a- and dys-.

    That would have been a clash. [the blindness folk]. Lots of people with acquired brain injury seem to be – at least functionally if not organically so – functionally blind and deaf.

    “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 wth 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.”

    ***

    “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.”

    How is your mid-line going, Astrid?

    Liked by 1 person

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