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Thread: Need advice; looking into purchasing my first chair.

  1. #1

    Need advice; looking into purchasing my first chair.

    Hey guys. This'll be my first post though I'm a longtime lurker, I finally decided to bite the bullet and register so I can come out of hiding. I'm Seth; I'm 21, a college student, and I don't have an SCI. However, I have a rapidly progressing - I went from walking unassisted to being on forearm crutches and unable to do more than 10-15 minutes at a time without extreme muscle fatigue in under two years - but totally undiagnosed condition (going on 8 years) in addition to a neurological disorder called dysautonomia. My symptoms include things like poor balance, muscle weakness, tremors, difficulty breathing, muscle spasms, neuropathic pain and muscle soreness, etc. and I've been resisting, but now it's time to seriously consider a chair. That is the difference between sitting at home in my bed or on the couch all day and going back to school or being able to work.

    I have Cigna insurance, and their coverage policy is a little hard to understand; I'm not sure if it's actually written in a confusing way, or if I'm just not comprehending it properly. Here is a link - warning, it's a PDF - if anyone would like to take a look at it. I'm basically caught trying to figure out what is better; to save up a little at a time and purchase a used TiLite off of Ebay and hope I can measure myself properly and tweak as needed, or go through insurance?

    I have no idea if my insurance will cover the kind of chair I need; because of my muscle weakness, I will be spending long amounts of time in it (think twelve hour days on campus, walking my service dog, nights out at the bar, long shifts at work, etc.) and I'm not capable of pushing anything heavy - I used a big heavy hospital chair for a while and other people had to push me, yet I got a chance to try out a friend's TiLite rigid chair and it was absolutely perfect. A dream. In addition, I'm kind of a small dude - 5'4" and 130#ish - so I worry about measuring wrong and ending up in something too big for me if I were to do it myself.

    At this point I know that going without a chair isn't really an option - and I'm okay with that, because I'm looking forward to having real freedom again. I'm just stuck between a rock and a hard place, especially because I'm unemployed.

    If you guys don't mind my asking:
    What's the average cost of a chair under an insurance company like cigna, aetna, etc? Or, if anyone can help me find the copay for my provider (open access PPO) that'd be fantastic.
    Would I be better off purchasing a used demo chair? There's no way I can afford to purchase new from someplace like Spinlife or Sportaid, especially as I'm unemployed right now.
    Approximately how long does it take, from the first prescribing visit to actually getting a chair?

    Thanks guys. I'm sure either option will result in more questions from me, hah, but any assistance is much appreciated!

  2. #2
    Alright, I gave them a call - $500 deductible, then 80% of the rest of the cost.

    So now the question is mostly, is it going to be better to go through insurance and get something custom fit, or buy a used demo chair? Can one go to a seating clinic and get measured, etc. without that being at a DME or something where I'm going to be looking at measuring only to purchase?

  3. #3
    Senior Member
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    Stag,

    Have you been tested for Myasthenia Gravis? Those symptoms sound spot on.
    Rollin' since '89. Complete C8

  4. #4
    First chair? something cheap and full adjustable

  5. #5
    Crappler - No, I haven't, not to my knowledge anyway, but it's been 8 years of a hunt so I've forgotten a good bit! I have no eye issues (I just looked it up and did a little reading) but everything else sounds right on par - I start out fine enough and then sharply decline to a point of nonfunction pretty darn quickly, and they haven't been able to really diagnose anything in short neuro appointments. They've suggested MS quite a few times, but my MRIs were clean so it was never looked into further. I'll definitely do some more research on that, and thank you!

    Toto - Got it. I didn't even think about adjustability really - thanks!

  6. #6
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    Carts,
    The ocular form is a little more rare, but the disease can effect anything at the neuromuscular junction. Which basically means your brain tells your body part what to do, the neuro transmission moves down to where it should, but when it gets to destination it doesn't reply, (basically). Plus, it's all about fatigue; the more you use it, the worse it gets.
    How do I know about this, you might ask? I'm lucky enough to not only have a 20+ sci, but also MG. (myasthenia gravis). YAY ME!
    Rollin' since '89. Complete C8

  7. #7
    Crappler - Huh. That's really interesting (and what a one-two punch you have there, dang!) I'm actually about to make another neuro appointment to get a new placard and paratransit stuff ironed out, so I'm making a note of this.

    The fatigue is definitely, at this point, kind of the defining characteristic for me; I start off with already weakish muscles and poor grip strength, but with any extended use my limbs turn into noodles. That's how I've described it to everyone, since it's the best way to explain what they feel like with overuse. Spaghetti - heavy, floppy, takes serious serious effort to move them, and it absolutely improves with rest, but by the end of the day, I can't squeeze at all in either hand. The whole "serious effort" thing sums up the resp. issues too - breathing isn't fluid like it should be, I have to consciously inhale because it takes work.

  8. #8
    Senior Member
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    Dude, those are all classic MG Symptoms. There is treatment out there too, no cure, but absolutely treatment.
    I hope you get tested for it. Maybe you won't need a chair, afterall.
    Rollin' since '89. Complete C8

  9. #9
    Stag, your symptoms match a mitochondrial myopathy too. Maybe you should check this out too.

  10. #10
    Thanks guys! I will definitely look into those things; I would probably get a chair anyway because the Dys, also progressive, means my balance goes to beans and I have an unfortunate tendency to lose consciousness or black out while standing up (but not while sitting) but it'd be nice to not have to worry about being able to push it because my muscles have decided to fail on me. To the neurologist!

    Right, right, that makes sense. Getting something good now is better than something that isn't ideal. Based on sizing and weight concerns it looks like I'm going to have to try to go through insurance and hope they don't deny it.

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