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I had my evaluation at the rehab center - Tilite ZRA is ORDERED!

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  • #31
    I have both a PT and an OT who address my positioning concerns, who are also who I went through for my chair and wrote the letter of necessity, etc.

    I don't know, honestly, but I know it's not straight up for sure (it was when I first arrived to get it, but I kept falling over.) I need to measure it since they adjusted it at the hospital when I went in to pick up my chair so it's a bit different than it once was; I'm reclined slightly, but not enough to really make much of a difference in my respiratory function. I do have pretty substantial trouble breathing but it's linked to muscle weakness - the more I do/the longer I'm sitting up, the more fatigued I get, but it always takes effort to draw in a breath. Recline does help me, though - I don't go anywhere without my van, so I transfer out of my chair regularly to rest and recline my car seat back. I don't drive, so this works for me since I rest on the way to/from destinations.

    I haven't thought about it, but I don't know that I'd feel comfortable with my COG back that far nor that kind of height and restriction of movement in my backrest/headrest - it'd make it harder to push my chair than it already is, and if my instability progresses to the point that I'd consider a headrest I'd probably attempt a hard cervical collar for stability and support first vs potentially compromising chair stability/efficiency, you know what I mean?

    I hope so too, but I'm sure I will! I look forward to going out now rather than viewing it as sort of Mount Everest, so that's a start.
    Not SCI - Progressive neurological disease with secondary dysautonomia.


    • #32
      Thats what I brought up in the other thread, the huge toss off between stability of COG for a lot of recline and use of a headrest, and ability to self propel the chair. Its really hard when you have conflicting needs.

      In my experience with cervical instability, a headrest would make things worse. I personally get more neck and head pain when reclined, and when my head rests against something. I only use a soft collar when needed. Resting my head against something especially causes pain at the top of my neck and base of my skull, so it may be more of the cranial cervical instability there for me. But something to consider. I spend most of my time in bed when not in my chair as well, though I've started spending time on the couch with my laptop since I moved last month. And on the couch, if my head is resting back against the couch (which it does if I slouch and recline my back) it hurts. In bed its similar, a toss off but I go back and forth. Sitting up feels better for my head and neck, but hurts my back. Reclining helps my back, but results in a more forward and not neutral neck position which hurts. Laying down flat on my back is the worst for the head and neck pain. I have a mix of stuff going on though with the instability, stenosis from disc bulging, occipital neuralgia, and migraines as well. The worst part is the different causes of the headaches, so figuring out the right treatment to do like migraine pill or not! Is it a migraine, an occipital neuralgia headache, or an instability triggered headache...

      I'm glad your chair is giving you so much more energy! And maybe it might improve over time? It has for me, even with the underlying disorder being progressive. I don't have the same neurological decline in my muscles though, just a movement disorder plus the connective tissue disorder muscle issues. Fatigue and I are on really close terms though. Before my chair I was primarily bedridden, but the first day I got it we went to the art museum and spent nearly 4 hours there which shocked the hell out of me when my med alarm went off. I pushed myself on the marble floors, my roommate pushed me on the carpet. But I'd gone from going out with my forearm crutch and lasting maybe 90 minutes somewhere with most of that resting and needing a day or two to recover after, to not a lot of pain and no recovery period after that first day. As I have ups and downs how much I can do of course changes, but there's still such a huge difference compared to before. My chair was my first ultralight and I did a lot of research before getting it, everything was practically perfect except the RSH and at the time no better option existed. I do wish I had gone narrower, but it was my first chair.
      Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

      I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.