help...choosing first custom chair?

[voxina]

I have a movement disorder, motor tics and dystonic tics, so I have basically spasm attacks that unpredictably immobilize me. Sometimes it's just my legs sometimes it's my upper body...sometimes my whole body from toes to eyes..sometimes deep pressure from my service dog can help enough to almost stop them...other times it doesn't do enough.

So, uh, it's kind of...let's see, will I be able to walk or sit up or control any given movement of my body at any given moment...and it varies like the time of day, but between spasms/attacks/etc I function like an able-bodied albeit very clumsy person.

anyways.... I'm a part-time wheelchair user due to the craziness of my body/brain...and I finally got my license (I'm a teenager and high school student) and I found with my new independence, going places just me n my service dog, that difficulty walking is a very real problem...and my current wheelchair a stripped-down standard with cheap quick release wheels, is both too rickety, heavy, and uncomfortable to do the job I need it to do.

So I talked my parents and doctor about the perks a lightweight chair would have...I really want an Aero Z Tilite... but I'm entirely new to the rigid chair and ultralight chair party, so I was hoping for some advice....

like the sorts of casters are low-maintainance but not too heavy... and if spoked wheels are all that different from mags. (I've never had a set of spokes...I hate my mags though...they're so ugly!)

I'm going to a mobility vendor Monday...so I'm anticipating demoing an ultralight or two.

Oh...and according to my mom (I'm under her healthcare pollicy) her plan doesn't cover mobility devices. I'm not so sure it is necessarily so though. I've heard from friends about how their doctors have advocated for them and gotten things done. (friends with rare diseases needing unusual unapproved un-covered treatments.) Before we order one I'm definitely going to make sure we can either get it covered or have a payment plan or something.

Tips? Tricks?

Thanks!

Voxina

[LaMemChose]

Originally Posted by voxina

I have a movement disorder (not SCI or neurodegenerative) but hyperkinetic...so I have basically spasm attacks that unpredictably immobilize me. Sometimes it's just my legs sometimes it's my upper body...sometimes my whole body from toes to eyes..sometimes deep pressure from my service dog can help enough to almost stop them...other times it doesn't do enough.

So, uh, it's kind of...let's see, will I be able to walk or sit up or control any given movement of my body at any given moment...and the answer varies from second to second and between spasms I function like an able-bodied albeit very clumsy person.

anyways.... I'm a part-time wheelchair user due to the craziness of my body/brain...and I finally got my license (I'm a teenager and high school student) and I found with my new independence, going places just me n my service dog, that difficulty walking is a very real problem...and my current wheelchair a stripped-down standard with cheap quick release wheels, is both too rickety, heavy, and uncomfortable to do the job I need it to do.

So I talked my parents and doctor into the perks a lightweight chair would have...I really want an Aero Z Tilite... but I'm entirely new to the rigid chair and ultralight chair party, so I was hoping for some advice....

like the sorts of casters are low-maintainance but not too heavy... and if spoked wheels are all that different from mags. (I've never had a set of spokes...I hate my mags though...they're so ugly!)

I'm going to a mobility vendor Monday...so I'm anticipating demoing an ultralight or two.

Tips? Tricks?

Thanks!

Voxina

Be aware a lightweight chair can be more prone to flipping. You'll want anti-tipper bars.

Please excuse my ignorance in asking, but how you drive with such severe, unpredictable, uncontrollable movements. If your body locks up head to toes, including your eyes, and can remain that way for an indeterminate period of time, how do you maintain control of a vehicle?

[chasmengr]

I love my TiLite AeroZ.

Getting fit properly is VERY important. A wonderful chair that's poorly fit is a bummer (note: vendors typically do NOT know how to fit a chair properly even though they think they do). Don't rush a purchase decision. After your visit, post about it here so we can comment.

I run spoke wheels; they're fine - better than mags (unless you need to reach through your wheels to get to things under your chair).

Regarding casters: the best multipurpose light-weight, durable casters IMO are FrogLegs Epic Aluminum-hub Soft Rolls. I like 5". Many users like 4".

Tips and tricks.
- Some vendors will say insurance won't pay for TiLite chairs - that's not true - insurance typically won't pay for titanium chairs (for which TiLite is well known). But TiLite makes great aluminum chairs (e.g., AeroZ) for which insurance will pay.
- Beware TiLite's performance casters - they use different bearings than other casters. They're decent casters, just non-standard bearings.
- Many TiLite buyers become familiar with what FrogLegs casters need, order their TiLite chair with a FL-compatible caster setup, then swap out to FL on their new chair.
-On this forum, wheelchair vendors are often called DMEs (Durable Medical Equipment Supplier).
- be aware of the weight games manufacturers play. Published weights are for a stripped down chair (often without the rear wheels - known as "transport weight"). Accessories weigh extra (e.g., side guards, anti-tippers, etc.), and add up very quickly. If weight is important to you, investigate carefully. For example TiLite's published AeroZ transport weight is 12.4#; with rear wheels and accessories mine weighs 35#. Tilite is not alone - they all play this game.

[voxina]

Originally Posted by LaMemChose

Be aware a lightweight chair can be more prone to flipping. You'll want anti-tipper bars.

Please excuse my ignorance in asking, but how you drive with such severe, unpredictable, uncontrollable movements. If your body locks up head to toes, including your eyes, and can remain that way for an indeterminate period of time, how do you maintain control of a vehicle?

I only drive on good days...days that I've had almost no tics, when I've got optimal amounts of medication in me, and no stress, fatigue, exercise or heat to trigger an episode. So I'm basically not as independent as I'd like but still want to be more, and particularly independent in my chair, even though I may not drive myself anywehre but once or twice a week and to/from school when my tics permit. And they're like..it locks and twists for a second then that one ends..it's a thing with tics...they only last seconds but come in clusters so it's like twith-relax-twitch-relax- twist...for minutes or however long it goes on.

I guess the make or break of driving for me has been that I can feel when my movements are coming, I can feel a buildup tension before the big ones hit, before they actually start, sometimes as much as half an hour, before the jerking and the twisting, the spazzing, that I can react to get off the road get my service dog to lie on me, try to do deep breathing, which helps, and the deep pressure of my enormous dog, mobility service dog, that is given by him lying on me, has a great effect on my movements, since they're responsive to this sort of sensory overload my brain goes into, and the deep pressure is kind of squashing so it holds me in place. (during ones but so bad I lie down during...floor or anywhere is better than falling out off a piece of furniture.)

So it sounds weird and pretty different from normal spasticity, that's because I have very severe Tourette's syndrome. Tourette's yes, like the noises and strange outbursts. That's the one. The swearing, called coprplalia, in Tourette's is rare (9-15% affected) but I have that too, although it's not as severe in that aspect as some, and I'm good at masking it, working to distort the sound as it comes out.

And thanks! These are the kinds of thigns I had no idea about just from the web! The info on the chairs!

[totoL1]

Originally Posted by LaMemChose

Be aware a lightweight chair can be more prone to flipping. You'll want anti-tipper bars.
?

That`s not true, what make a chair more or less prone to flipping isn`t the weight of the chair
Is the dump(difference between the rear seat height and front height) and where you`ve got your center of gravity (distance between the backrest tube and the rear wheel axle)
The height of the backrest and the angle it`s got influence a bit too.

[voxina]

I demod an ultralight today...a couple, a quickie GT was the best-feeling one I've tried...they only had quickies, although I'm kind of leaning towards a tilite. Thanks, that's good to know, they're not necessarily too tippy...b/c that was a concerno f mine...I have jerking movements that could tip a chair, espec if I'm carrying a backpack, but at the same time I need to be albe to do wheelies for thresholds and stuff...and besides, wheelies are awesome to show off and have fun too. (Wheelies in my current chair are next to impossible...think depot chair.)

[elarson]

Welcome to the forums voxina. You really sound like you are on top of things for someone still in high school. You have definitely come to the right place for advice, even though it is primarily SCI. We also are not SCI, but I have found this forum invaluable.

I went to high school with a friend with severe Tourette's syndrome, that sounds very similar to yours (good days/bad days). I think you did a really good job of explaining it to people here, because it will help you to get better advice.

I don't have any advice because we are newbies too, but wish you luck in getting your new chair. I'll leave it to the pro's here, who can sometimes be a bit rough but well meaning, to help you sort it out.

[LaMemChose]

Originally Posted by totoL1

That`s not true, what make a chair more or less prone to flipping isn`t the weight of the chair
Is the dump(difference between the rear seat height and front height) and where you`ve got your center of gravity (distance between the backrest tube and the rear wheel axle)
The height of the backrest and the angle it`s got influence a bit too.

I did not flip in a previous chair even though the dump was the same as what I push now. My titanium chair is much more responsive to any movements, including a tendency to flip if I spazz in a big way and/or hit uneven pavement on an inclined slope. I lean to one side more than I ever have. It is not helping things.

Not good.

[-scott-]

Originally Posted by LaMemChose

I did not flip in a previous chair even though the dump was the same as what I push now. My titanium chair is much more responsive to any movements, including a tendency to flip if I spazz in a big way and/or hit uneven pavement on an inclined slope. I lean to one side more than I ever have. It is not helping things.

Not good.

move your wheels back an inch or two & you'll notice a world of difference.

(adjust the COG, i.e., how far forward the axle tube is relative to your backrest)

[LaMemChose]

Originally Posted by -scott-

move your wheels back an inch or two & you'll notice a world of difference.

(adjust the COG, i.e., how far forward the axle tube is relative to your backrest)

Thanks, Scott! Will do.