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Thread: Adjustments to wheelchair for people with seizure disorders?

  1. #1

    Adjustments to wheelchair for people with seizure disorders?

    I don't know that the SCI board is the best place to be posting this question. However, I've looked all over the internet, both for more "general purpose" communities of wheelchair users, and for epilepsy forums. I found a few of both, but none of them seem nearly as active as this place. So I'm hoping that some of you here might be able to give me some ideas.

    I am about to order a new wheelchair. I'm a bit conflicted about that. For four years, I had a barely-controlled low-grade staph infection in my right knee, which dramatically reduced the mobility and weight-bearing capacity of that leg. Stack that on top of living 29 years with cerebral palsy, and you have the perfect recipe for a supremely weird gait, which necessitates the use of a wheelchair unless the idea is to destroy a perfectly good back and pair of shoulders, too. However, this summer, we finally got the last remnants of that staph infection under control. Because my knee is moving better and can bear more weight now, my gait has been improving in leaps and bounds ever since. It's gotten to the point where I sometimes don't even use crutches while inside. Having the chair still makes my mobility a lot more effortless when I'm outside. But the primary reason I usually choose to sit rather than stand when I go out is now an entirely different one: it is because when I fall, I'm closer to the ground sitting down than standing up.

    I've had a seizure disorder all my life. That's not always been a huge problem for me. For most of my teenage years and early twenties, it was fairly well-controlled with medication. But for whatever reason, in the past three years or so, the pills haven't been working all that well. Right now I have on average one seizure a month. They are of the "fall to the floor and shake" variety, which is ... uh, let's go with "uncomfortable" to the people around me. They often ask if there isn't anything I can do to my wheelchair to prevent it from tipping over backwards when the seizure starts, so that I would not be falling to the floor -- or, at the very least, not falling to the floor so abruptly.

    The obvious solution might be anti-tippers. But I'm afraid they would just break off after two or three seizures, in which case they won't have helped much, in the grand scheme of things. Also, I think anti-tippers will prevent me from jumping up and down kerbs, which I do many times a day.

    Any other ideas? Are there any wheelchair users with seizure disorders here? What do *you* do?
    Last edited by Saranoya; 03-28-2015 at 07:21 PM. Reason: spelling error

  2. #2
    Quote Originally Posted by Saranoya View Post
    The obvious solution might be anti-tippers. But I'm afraid they would just break off after two or three seizures, in which case they won't have helped much, in the grand scheme of things. Also, I think anti-tippers will prevent me from jumping up and down curbs, which I do many times a day.

    Any other ideas? Are there any wheelchair users with seizure disorders here? What do *you* do?
    First get extra sets of anti-tippers. Use one set as a prototype for fabrication to take to a shop to be made out of a stronger metal. The others are for backup. You might fall when you are outside and break a bone, but if you tip over violently backwards from your wheelchair the bone you likely will break will be your skull. It could be the last bone you ever break.
    I have had periodic paralysis all my life. I lost my ability to walk in 2011 beginning with a spinal block, which was used for a hip fracture caused by periodic paralysis.

  3. #3
    Quote Originally Posted by nonoise View Post
    You might fall when you are outside and break a bone, but if you tip over violently backwards from your wheelchair the bone you likely will break will be your skull. It could be the last bone you ever break.
    I've got that more or less covered. It's called a skater's helmet .

  4. #4
    There are different types of anti tippers and some are stronger than others. That wouldn't prevent them getting in the way of kerb climbs and descents though.

    You can make the chair less 'tippy' but that probably won't actually stop it tipping, just make it harder for you to propel and manage kerbs etc. Could be worth a try though if you really want to do something but don't want anti tips.

  5. #5
    Quote Originally Posted by Saranoya View Post
    I've got that more or less covered. It's called a skater's helmet .
    Good, those look like they cover the back of the head well.
    I have had periodic paralysis all my life. I lost my ability to walk in 2011 beginning with a spinal block, which was used for a hip fracture caused by periodic paralysis.

  6. #6
    I have no seizures, yet I still wear a skater's helmet when I'm moving fast outside (e.g., downhill), at night (helmet is best location for headlight), or when using my Dragonfly). I have enough brain damage already; I don't need more.

    I have a TiLite titanium frame Single Swivel Caster Anti-tipper fabricated to allow wheelies. I can tip back on it and spin. I got it because standard anti-tippers were bending on me.

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    I am a person with mild/moderate hexaparesis (impaired movement in 4 limbs, head, & torso) caused by RRMS w/TM C7&T7 incomplete.

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  7. #7
    Senior Member elarson's Avatar
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    I totally agree with you about there being a lack of equipment forums in other communities. People here have been very helpful to us, and there are a few others who have seizures. My husband had strokes and has hemipareisis and epilepsy. He also has seizures about once per month, which are partial and then generalized. He usually has aura's and has a little time to prepare for a seizure.

    He has a TiLite ZRA rigid and a TiLite 2GX folding wheelchair. In general, we find the ZRA rigid chair more solid for handling seizures than the 2GX folder. Both chairs are titanium, which has some dampening properties which help to prevent seizues for him. If using insurance you usually need to fight hard to get titanium, but often seizures are considered medical justification.

    I've heard people in the epilepsy community say that having a heavier chair would help make the chair more stable during seizures. I absolutely do not agree. If you are going to have your chair tip over on you, it's better that it is lightweight rather than a tank. It will also make it easier to propel with having cerebral palsy and will do your shoulders less damage.

    It will be really important that you get your center of gravity (COG) set right to make sure you are stable as possible for not tipping backward/forward. Absolutely do no consider any chair that you can not change the COG.

    When my husband has a seizure he tends to go sideways instead of backward/forward. He only has 2 degree of camber, and has tipped his chair over sideways. He does not have 4 or 6 degree of camber because our door widths are narrow, but more camber might be something to consider if you have no reasons not to.

    We find that bumps from the casters are often the biggest triggers for spasms and seizures. You may want to consider FrogLegs Epic or LiteSpeed soft roll tires. We have also considered suspension front forks (FrogLegs or Glide), but had a hard time configuring them right for stability. For rear wheels he has Spinergy LX's which help a little for dampening. If bumps and dampening are really important for you, you might want to consider a suspension chair like the Icon A1.

    We find D's hub locks to be very helpful because they keep the chair very securely locked. They are also nice because they can be engaged with one hand very quickly should the seizure come up fast on him. Just as a note, the more camber you have, the less holes the hub locks can connect to, which was another reasons we only have 2 degree of camber.

    I also think anti-tips are an absolute must. I think chasmengr's suggestion of the Single Swivel Caster Anti-tipper is good. My husband has the "user friendly anti-tips" and they are good, but not as strong. I do like that they can be raised when not needed and for using his ZX-1 power add-on. Another to consider is the Center Mount Swivel Caster, but we have no experience with it.

    He has swing-away armrests on one chair, and flip-back armrests on another chair. Before he had desk arm "T" armrests. He did not like the desk arm "T" armrests because they got in the way of his transfers, but they were better for dealing with his seizures because he tends to pull on them when he seizes. I'm still looking for a way to easily lock them, but have not succeeded. The desk arm armrests may be a good option if you seize while in the chair. There are types that have transfer loops on them, that may help if you need to lower/raise yourself from the ground during seizures.

    If you stay in the chair when seizing, you may want to consider a footrest that you can flip out of the way to keep your feet on the ground like flip-back or flip-up footrests. They may also help in standing up from your chair.

    My husband has an ADI caron fiber seat back. We find it very strong for handling seizures, and the hope is that if he did ever flip backward, which has not happened yet, that he would have more protection.

    If you are considering a TiLite chair, this is the Options Brocure that shows many of the options mentioned. http://www.tilite.com/documents/TiLite_Options.pdf
    Last edited by elarson; 03-29-2015 at 11:18 AM.
    Partner of an incredible stroke survivor. Limitations: hemiparesis and neglect (functional paralysis and complete lack of awareness on one side). Equipment: TiLite ZRA 2 and 2GX, Spinergy ZX-1, RioMobility Firefly. Knowledge: relative newbie for high-level equipment (2012), but willing to try to help others who are new with similar limitations (definitely not a guru, but inquisitive).

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