u/No-Light2416

Hi! I’m posting this on behalf of my friend, who is very early in the process of getting a custom chair. He is currently reliant on his wheelchair to leave the house, including going to work.

He is in a secondhand tilite aero z with mag wheels. It is incredibly heavy and too big for him, and one of the wheels just cracked, popping the tire and making his chair unusable. We are trying to reach out to Massachusetts’ program that provides secondhand dme for free, but they will not get back to us.

I wanted to see if anyone by any chance was on here anywhere near either western mass or the hudson valley in ny, and was able to help. If anybody has a spare set of wheelchair wheels with working tires, or a spare manual or power chair that he would be able to borrow for a couple months.

It would genuinely mean the world to me and to him if anybody knew of other programs we could reach out to, or if they had equipment they would be willing to loan out. He is working as much as he can in an attempt to pay for housing and stay in school, but he cannot work without a wheelchair. I really appreciate any response. Thank you

(Also - I reviewed the rules of this subreddit and I believe that this shouldn’t violate them, since I am not looking for money or trying to sell anything. Just looking for some community help.)

My own personal hell is when my gi dysmotility causes such bad bloating that it (a) pushes my ribs out of place and (b) puts pressure on the scar tissue surrounding my pelvis from pao surgeries. My pelvis was broken in six places and on nights like these i feel every one! Shout out to my fuck ass surgeon who told me that it was impossible to still be feeling pain where the bones were broken. But like he's never had pao surgery so what the fuck does he know about how it feels?

Hi - I will likely be getting a nasal tube placed soon due to gastroparesis. I don't know if I'm gettin an NG or NJ tube yet, but I just wanted to see if anyone who's gotten a tube placed at the NYP main hospital in Manhattan has any advice? I live closer to the Hudson Valley one but see my doctor in Manhattan.

I have a lot of medical trauma and would feel a lot better going into this knowing what steps it will entail. I would appreciate any advice.

Hi!

I got my first custom chair in October (a tilite Z through numotion), and tried to get just the upgrades that I knew I absolutely needed, so that I could get it through insurance as fast as I could (I was a full time wheelchair user in a hospital chair that was causing a lot of pain).

That said, now that I have my chair I am finding that a lot of the things I kind of wanted would actually be incredibly helpful. I wanted to see if you can get things like spinergy wheels and ergonomic handrims covered by insurance after the original chair has been delivered.

And, most importantly, how can one go about getting a power assist covered by insurance (bcbs) for a manual chair that has already been delivered? I got transit tie downs so I already have the "reinforced" frame. Diagnoses for context: got the chair mainly for hip dysplasia and kyphoscoliosis. I also have issues with my feet, ankles, knees, blood pressure, balance, and trunk control that were used to justify the chair and seating setup. The reasons I need a power assist include blood pressure/balance/exercise intolerance, alongside severe shoulder instability. My shoulders will subluxe with a very light touch from my hand, and fully dislocate frequently. However -- I have never seen a doctor about my shoulders. I could see a doctor and get a shoulder MRI if needed to justify this to insurance - that imaging would almost certainly show damage.

My last point - yesterday I tried out the empulse m90 at the abilities expo and I am completely in love. It does everything I would need in a power assist (including the ability to control the chair fully with a joystick, meaning that I could actually rest one of my shoulders when it is injured). Lifting each wheel individually was entirely possible for me, even with my jank ass shoulders. Does anybody know of any major issues with these that I'm not thinking of? Are they waterproof? The guy there said they were making attachments for tilite chairs "soon" - does anybody know what the realistic timeline of that might look like?

Would appreciate any help!!

Hi! I have a tilite z with a tension adjustable seat sling, which is actually driving me insane. I only ever use my chair with the cushion on, so I don’t see why I wouldn’t want a carbon fiber seat instead? Would love advice if I’m missing something on that.

That said, I wanted to see if anyone has diy’d this upgrade before and how you went about it? I would really much prefer doing this myself vs trying to go through numotion, and it seems fairly simple - order the carbon fiber and then screw it down? Again, would love any advice!