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New and going to my first seating clinic

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    New and going to my first seating clinic

    Hi all!

    First off, let me just say I don't have specifically an SCI. I mean, I do, but its from quite a few failed lumbar punctures that let to a 10 year decline to now my first set of wheels. They actually aren't sure of what it is and I'm finally going to a specialist after playing pass the patient for the past several years. Basically, it started with meningitis twice, ER doctors tearing my spinal cord to a spinal leak to a few blood patches to what they think is probably syringomyelia and dysautonomia. It started out with exercise intolerance, then fainting regularly, then fainting and blood pressure problems, then that added bowel problems, then odd neurological symptoms, and now my lower half likes to go completely numb and useless for long periods of time then decides to wake up to extensive pain on the regular. I can still use my legs when they are awake and walk, I just have a tendency to fall over or faint. So, its been a long journey and finally my doc wrote a script for a K0009 so I can get out of bed and move again. So apologize if I'm in the wrong place or if I'm intruding!

    I'm starting to get the hang of all the chair terms after lurking on this board and being a little obsessive. My insurance hooked me up with their biller, CareCentrix, who then gave me my DME, ATG Rehab. I have my first seating clinic meeting at the end of the month, but in the meantime, I get to use a loaner that my ATP brought over yesterday after using a crappy standard folder from my respiratory DME. Its a Tilite ZRa. And its kind of wonderful. I went to a museum yesterday and actually didn't want to leave because I didn't have to go to the car to lay down regularly. I suddenly want to explore everywhere after being predominately bed-bound.

    So, my question for ya'll is this: What do I need to know for the seating clinic? I know they are going to measure me and see what my needs are, but I'm still kinda scared. I finally get chair terms, but I still worry they are going to measure me wrong like so many of you have experienced! I really don't want my first chair to suck, but I'm guess its inevitable?

    Also, I don't know if I have proper form when pushing... I keep having my hands rub the wheels when I use the rim and it caused a sore yesterday!

    Thank you so much, everyone. And sorry if I'm in the wrong place!
    Meningitis in 2000 and again in 2002. Three failed lumbar punctures. A dural tear and spinal leak last several months. Two blood patches. Neurologically damaged, dysautonomic, narcoleptic, anemic, immunodeficient, asthmatic, depressed, and still alive.

    #2
    You've got questions so you're in the right place. Don't worry to much about getting terms right. It's more important they understand your limitations and what, if any, changes might be in your future. Also, let them no about your current living environment. Tight turns, doorway widths things like that. Just keep in mind the folks you are meeting with are smart so present them with problems and let them suggest solutions, don't dictate the solutions you think you need. Good luck.
    Tom

    "Blessed are the pessimists, for they hath made backups." Exasperated 20:12

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      #3
      I would recommend pressure mapping. They will have you sit on a cushion to determine your pressure points. My bones are close to the skin, so I needed a high profile cushion. I really like the Roho's but it is a matter of choice. I have been in a chair 5 plus years and always learning. I did get the natural handfit rims. I really like them for pushing. I did away with the metal center ring. It left black marks on my hands constantly as it wore the paint off. Tilites are good chairs. I have a ZRA and like it very much compared to others that I have tried. I wish you well.
      Best Regards,
      Joe

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        #4
        Welcome. I have dysautonomia as well and my chair has made a huge difference in my symptoms. my energy levels are so much higher without the tachycardia and near syncope just from standing up. I hadn't realized how much of my energy was being wasted from the constant up and down whenever I tried to do anything. (I can't stand for long) I was prescribed the chair due to my genetic disorder and the dysautonomia help was unexpected.
        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.

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          #5
          Originally posted by Prak View Post
          . . .So, my question for ya'll is this: What do I need to know for the seating clinic?
          From what I've read, some clinics are fabulous, and others not so. A fellow CCC member is a professional seating clinician. He wrote an article addressed to other clinicians. I found it to be very helpful in identifying the relative quality of clinicians.
          Chas
          TiLite TR3
          Dual-Axle TR3 with RioMobility DragonFly
          I am a person with mild/moderate hexaparesis (impaired movement in 4 limbs, head, & torso) caused by RRMS w/TM C7&T7 incomplete.

          "I know you think you understand what you thought I said, but what I don't think you realize is that what you heard is not what I meant."
          <
          UNKNOWN AUTHOR>

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            #6
            demo, demo, demo
            Get involved in politics as if your life depended on it, because it does. -- Justin Dart

            I shall not tolerate ignorance or hate speech on this site.

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