first chair, got some questions

[i'm ill]

hey folks,

i'll hopefully be getting my first chair soon (going for the evaluation next week) and i have no idea what i'm doing so here's some questions! huge thanks in advance for any help you can give

first a bit of info on me: i have chronic fatigue syndrome and although i can ambulate some, it's hard on me. i have full use of my hands and arms and full sensation all over. i have an enlarged spleen that makes lifting heavy stuff (25+ lbs) or heavy exercise dangerous. my plan is to get an ultralight with a smartdrive or some other power assist. i'll mostly be using it outside of the home since i can get around in my tiny apartment without a chair. so i'd be using my chair for shopping trips, visiting relatives, that sort of thing. because of my chronic fatigue i need something as light on maintenance as possible without sacrificing a light weight. i'm leaning toward either a tilite rigid adjustable or a ki mobility rogue (i hear their customer service is a lot better than tilite's?)

anyway, questions:

1, what should i know before going for my evaluation? should i be taking notes while there?

2, what accessories and stuff should i prioritize for weight savings? like, what sort of brakes are lightest, should i ignore fancy suspension caster forks, what pushrims are lightest, that kind of thing? much as i love comfort and convenience, i love my spleen not exploding more, and the more weight i save the less paranoid i need to be.

3, similarly, what stuff should i not compromise on to save weight? for instance marathon plus tires seem like the kind of thing i want, since it's less maintenance than weaker pneumatics but way lighter and more comfortable than solids (or so i hear?). on the other hand schwalbe ones are less than half the weight of marathons with what schwalbe says is almost as good puncture resistance so... i dunno.

4, has anyone tried the light-up casters volcanic wheels makes? how bad do they suck? i'm so tempted but i have this sneaking suspicion they're total crap.

5, i probably want sideguards. i've read some people hate the removable ones but i'm not sure what the difference is?

i've probably got other questions but that's all i remember right now. thanks for reading!

edit: another question! are there reliability or maintenance differences between the different spinergy wheel models (or other brands)? like is spox more reliable than the lxl, does traditional shape require less maintenance than x-laced, etc - or should i just go for whatever's lightest (assuming insurance will pay for it)?

[2drwhofans]

There are others on this forum far more knowledgeable about wheelchairs. I'll leave the technical aspects to them.

Having just watched my husband push from our house to the mail box, I can tell you that manual wheelchair use is hard work. His Smart Drive weighs 12.5 lbs. Adding that to the weight of a basic TiLite chair could be a highway to the danger zone you've described for your spleen.

Have you considered a power mobility scooter?

[i'm ill]

There are others on this forum far more knowledgeable about wheelchairs. I'll leave the technical aspects to them.

Having just watched my husband push from our house to the mail box, I can tell you that manual wheelchair use is hard work. His Smart Drive weighs 12.5 lbs. Adding that to the weight of a basic TiLite chair could be a highway to the danger zone you've described for your spleen.

Have you considered a power mobility scooter?

thanks for the response! doctors say it should be fine as long as i'm not trying to carry the whole assembled chair. i'm told that pushing the chair without the smartdrive would be dangerous in some situations (if i'm going up a steep hill for instance), but i wouldn't be able to do that anyway and with the smartdrive turned on it should be fine.

a scooter's a possibility but i'd much prefer a more portable option. it also seems like a scooter is significantly more expensive since i'd need a van with a lift.

[nonoise]

... with the smartdrive turned on it should be fine....

I'm sure you know this, but the MX2+ starts and stops by tapping. Previous models are hand rim activated which it sounds like you need to avoid.

[nonoise]

I'll take a stab at answering your questions.
1. Don't trust the DME durable medical equipment salesperson. So yeah take notes and recheck with those that have been through the process several times here.

2. Since you can stand, I would just get ordinary push to lock brakes. Suspension forks are personal, outdoors I prefer large pneumatic casters instead. 8" pneumatic casters provide me with a pretty soft front end ride. Plain anodized aluminum or titanium handrims would probably be the lightest but harder to use. I like a plastic coated rim or Surge LT, all long tabs.

3. Marathon plus tires hold up fantastically well. I think they'll run even when flat. As for saving weight, I have never bought a new chair, but have purchased 12 - 15+ used ones. On all but one of them that I've tried to make usable I've removed stuff, never added anything.

4. Are these light-ups supposed to be a safety feature? I thought the light-ups were for kids. They make them for skateboards.

5. Lots of people seem to need them and I used to be on a quest for them. That is until I finally got a set. What are they for? Unless you've got a lot of bulky clothing, it's just one more thing to add on IMO.

[QTiPi]

Are you paying out of pocket? If not, to qualify, you'll generally need to establish that you need the chair to get around your own home. Funders don't care whether you can get to the doctor's/dentist's/supermarket or not, unfortunately. So focus on your worst of bad days and how hard or unsafe it is to get around then. Are you at high risk of falls? Mention that.

I use the light-up castors made by Volcanic and I like them. They give a slightly softer ride than other hard plastic castors I've tried, and they're lighter than metal-hubbed castors. The lights make me feel a bit safer when out at night, eg crossing a dark carpark to get to the car. Also they amuse small children. :-) They seem to discolour quickly, or at least the 5" ones do--I replace them once a year or so. It's been suggested that I try removing a layer of the plastic to see whether the discolouration goes all the way through, but I haven't got around to it.

Recommendations on side guards kinda depends why you think you might want them--just to help keep your clothes clean? Or for sitting on to reach high things? Or to help 'contain' you in your chair? Do you think there is any chance that high side guards might interfere with your push stroke? If you have solid metal side guards that are welded on and you decide you hate them and want them removed or cut down, that's a much more serious problem than if you have removable plastic ones. But if you're going to be doing any sitting on them (which I kinda doubt since you have sensation!) you'll want them to be fixed. Fixed side guards may interfere with your ability to fold the seat-back for loading into a car (assuming you're going for a folding back).

Are you going to be loading this chair into a car yourself? If so, think about the weight in terms of what the individual separate pieces you have to lift weigh, not the whole. eg you'll be taking the wheels off before loading, and if your cushion is heavy you could take that off too. The Smart Drive you'll remove to load. The biggest most awkward piece will be the frame itself. If you're not going to be actually lifting the chair yourself, then weight becomes--well, not exactly a non-issue, but not a very good measure of how easily you'll be able to PUSH it.

[i'm ill]

I'm sure you know this, but the MX2+ starts and stops by tapping. Previous models are hand rim activated which it sounds like you need to avoid.

yeah, i've looked into that, i think i should be okay using the regular mx2 mode (i'm okay with short movements like one or two pushes), but the new tap-only mode is a great alternative in case my disease progresses.

I'll take a stab at answering your questions.
1. Don't trust the DME durable medical equipment salesperson. So yeah take notes and recheck with those that have been through the process several times here.

2. Since you can stand, I would just get ordinary push to lock brakes. Suspension forks are personal, outdoors I prefer large pneumatic casters instead. 8" pneumatic casters provide me with a pretty soft front end ride. Plain anodized aluminum or titanium handrims would probably be the lightest but harder to use. I like a plastic coated rim or Surge LT, all long tabs.

3. Marathon plus tires hold up fantastically well. I think they'll run even when flat. As for saving weight, I have never bought a new chair, but have purchased 12 - 15+ used ones. On all but one of them that I've tried to make usable I've removed stuff, never added anything.

4. Are these light-ups supposed to be a safety feature? I thought the light-ups were for kids. They make them for skateboards.

5. Lots of people seem to need them and I used to be on a quest for them. That is until I finally got a set. What are they for? Unless you've got a lot of bulky clothing, it's just one more thing to add on IMO.

thanks for the answers! i definitely plan to check here after the evaluation.

the light-ups are purely because i love colors and flashing lights. i guess it could be a safety thing, mostly i just miss those cool light-up sneakers i had when i was a kid, and it's not like i'd get much use out of them now :P

as for the side guards i got the impression they'd be helpful for keeping my clothes clean/dry?

Are you paying out of pocket? If not, to qualify, you'll generally need to establish that you need the chair to get around your own home. Funders don't care whether you can get to the doctor's/dentist's/supermarket or not, unfortunately. So focus on your worst of bad days and how hard or unsafe it is to get around then. Are you at high risk of falls? Mention that.

I use the light-up castors made by Volcanic and I like them. They give a slightly softer ride than other hard plastic castors I've tried, and they're lighter than metal-hubbed castors. The lights make me feel a bit safer when out at night, eg crossing a dark carpark to get to the car. Also they amuse small children. :-) They seem to discolour quickly, or at least the 5" ones do--I replace them once a year or so. It's been suggested that I try removing a layer of the plastic to see whether the discolouration goes all the way through, but I haven't got around to it.

Recommendations on side guards kinda depends why you think you might want them--just to help keep your clothes clean? Or for sitting on to reach high things? Or to help 'contain' you in your chair? Do you think there is any chance that high side guards might interfere with your push stroke? If you have solid metal side guards that are welded on and you decide you hate them and want them removed or cut down, that's a much more serious problem than if you have removable plastic ones. But if you're going to be doing any sitting on them (which I kinda doubt since you have sensation!) you'll want them to be fixed. Fixed side guards may interfere with your ability to fold the seat-back for loading into a car (assuming you're going for a folding back).

Are you going to be loading this chair into a car yourself? If so, think about the weight in terms of what the individual separate pieces you have to lift weigh, not the whole. eg you'll be taking the wheels off before loading, and if your cushion is heavy you could take that off too. The Smart Drive you'll remove to load. The biggest most awkward piece will be the frame itself. If you're not going to be actually lifting the chair yourself, then weight becomes--well, not exactly a non-issue, but not a very good measure of how easily you'll be able to PUSH it.

thanks for the answers! i probably won't have to pay out of pocket, at least not fully, but i'll take your advice to heart, thanks.

glad to hear you like the light-up castors, as someone who hasn't matured since i was a small child, they amuse the hell out of me!

i'd be using side guards to help keep my clothes clean and/or dry. i'm a fashion nerd and although my clothes are all dirt cheap i still want 'em to stay pretty.

and yeah, i'll mostly be loading the chair myself, and that's how i've been thinking of it - lifting pieces rather than the whole thing.

[i'm ill]

got another question (i've edited the first post to add it too). are there reliability or maintenance differences between the different spinergy wheel models (or other brands)? like is spox more reliable than the lxl, does traditional shape require less maintenance than x-laced, etc - or should i just go for whatever's lightest (assuming insurance will pay for it)?

[nonoise]

got another question (i've edited the first post to add it too). are there reliability or maintenance differences between the different spinergy wheel models (or other brands)? like is spox more reliable than the lxl, does traditional shape require less maintenance than x-laced, etc - or should i just go for whatever's lightest (assuming insurance will pay for it)?

Fewer spokes look cool and make it easier to reach under your chair, but the Spinergy rep told me all their wheels use exactly the same bearings. Figure that for performance and maintenance. I have both LX and Spox, they seem equal except for looks. The x-laced ones are meant for stability when locked in place which should be of little concern to you since you can stand. It matters little to me too since my issue is with tire traction between the hardwood floors and the tires while transferring.

[i'm ill]

Fewer spokes look cool and make it easier to reach under your chair, but the Spinergy rep told me all their wheels use exactly the same bearings. Figure that for performance and maintenance. I have both LX and Spox, they seem equal except for looks. The x-laced ones are meant for stability when locked in place which should be of little concern to you since you can stand. It matters little to me too since my issue is with tire traction between the hardwood floors and the tires while transferring.

okay thanks, that's really helpful!