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Thread: New Wheelchair Time!

  1. #1
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    New Wheelchair Time!

    Hi everyone!
    By way of introduction, I'm Fly2Lo (I don't drive too fast, I ...Fly2Lo... lol), 33 y/o female from Space Coast Florida, USA.

    I'm an ambulatory wheelchair user, I use about 70-80 percent of the time.
    I don't have a SCI, but I do have a genetic degenerative connective tissue disorder called Ehlers-Danlos Syndrome --- basically, all of my collagen is faulty and our bodies are made up of 80% collagen, so it poses a bit of a problem for me, lol. This causes many other issues as well, but one of them is mobility. I can dislocate or sublux a joint with VERY little pressure... I dislocate and sublux multiple joints many times a day.
    I also have a neuro/cardio condition called Postural Orthostatic Tachycardia Syndrome, which is exactly what it sounds like...my heart goes crazy if I stand up too fast --- I have problems regulating body temp (a problem in the Florida heat for sure), and my autonomic nervous system in general acts up.

    My health issues mean that I really need a wheelchair that is as LIGHT as possible to transfer into the car, etc. However, I know each accessory adds weight... and I need a few...

    My ATP/PT eval appointment is next Tuesday. I'm trying to get this in before my new insurance activates in October, as I met my deductible and am no longer out of pocket.

    I'm currently using a TiLite TX which I acquired secondhand about a year ago. It's about 10 years old, and if you aren't familiar or can't remember that far back in ancient history since it's so old, that is a titanium folding chair. I've got way too much money into it, with getting a Stimulite cushion, fold-down push handles, new upholstery, new tires... etc. And at that I would need a new back soon --- I just have the upholstery/tension back, my sling bottom is worn out... one wheel is very bent [I didn't do it lol]... it's time for a new one and insurance won't pay for my needs to the used one. If I would have known how much money this OLD chair would all cost me, I'd have tried for a different chair from the start...although: this one has allowed me to develop skills, increase my independence and figure out what I like and don't like; and figure out the fit problems it poses for me as well. I've also gotten to see how the satin titanium has held up [well] and the anodizing [not as well] with 10 years of life on a chair.

    Going forward, I want:
    -Rigid chair with more of a dump (weight savings/efficiency/vibration transfer)
    -A much better back (scoliosis and 7 herniated discs in my back --- my whole spine is degenerating quickly, have facet arthropathy and foraminal narrowing)
    -Probably Scissor brakes because I wear skirts a lot and they get caught on the brakes...
    - I also want fold-down sideguards which this one doesn't have. To compensate for the weight they'll add, I do NOT want push handles. I found I don't use them as much as I thought, and don't like them inviting people to push me and/or move me "out of the way". Annoying.
    - A rigid bottom insert for the cushion (the sling stretching out is making my hips lean inward and contributing to subluxations)
    - Spinergy LX wheels and Schwalbe Marathon Plus tires
    - SmartDrive for the days where my stamina and/or dislocations are particularly bad

    I also need a luggage rack (removable for weight savings when not in use) as I am a traveling salesperson and parttime travel agent, traveling by myself happens frequently.

    My goals are to be able to use my chair 100 percent independently (hence the SmartDrive for "bad" days)... be able to fit it in my car (a Camaro), reduce subluxations and dislocations, be able to go more places with my family. I only need to get around on tile, carpet, sidewalks
    and pavers, and MAYBE low cut grass occasionally. I really NEED to decrease the pressure on my back and shoulders from the tension back... I have terrible pain at the end of the night, partially from sitting in my chair a majority of the day with no support.

    My DME company typically puts folks in TiLite chairs which is good, that's what I want, though I'm not sure which model would be best. If it's relevant I'm 128 lbs, 5'1"; I've been pretty steady at that weight for several years, even with the wheelchair use in the past year being about 70-80 percent. I'd really like titanium again and really would like a Black Edition, but obviously, if insurance won't kick in any of the extra, that might be limiting. I'm certainly willing to kick in some extra $ as well.

    1. I'm curious on what TiLite model you all would recommend
    2. Pushrims that you like/recommend
    3. Thoughts on scissor locks
    4. If you see anything in this big long book I've written that you think might be a mistake for me to go with?
    5. Good/bad/ugly of SmartDrive? I can't do a power wheelchair due to weight and since I drive a Camaro... it won't fit lol. Power assist wheels being non-waterproof is a dealbreaker because... Florida
    ....


    If you have other ideas/stuff to add, I appreciate it. I've never been through a wheelchair eval before having got my current one second-hand... so any advice you have there is great too.

    Thanks so much for reading and for your input!
    I do not have an SCI; I have a genetic connective tissue disorder [Ehlers-Danlos Syndrome] It is degenerative and has affected my spine most of all, as well as most of my joints, causing them to degenerate, subluxate and dislocate VERY easily due to my body making defective collagen.

    I also have a disorder of my autonomic nervous system, Dysautonomia, which causes tachycardia at random times, and hypovolemia among others.
    I'm in a wheelchair about 80% of the time due to these.

  2. #2
    I will respond with some suggestions when I have more time to put thought into it, but I would first like to compliment you on your first post. It is so refreshing to read one so informative and well written. You did a great job on providing background on yourself, an excellent summary of needs/wants you have for your chair, and specific questions about the new chair, all in an organized and easy to read format. Thanks for setting the bar high.

  3. #3
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    Quote Originally Posted by endo_aftermath View Post
    I will respond with some suggestions when I have more time to put thought into it, but I would first like to compliment you on your first post. It is so refreshing to read one so informative and well written. You did a great job on providing background on yourself, an excellent summary of needs/wants you have for your chair, and specific questions about the new chair, all in an organized and easy to read format. Thanks for setting the bar high.
    Wow! Thanks, very kind of you!!!
    I do not have an SCI; I have a genetic connective tissue disorder [Ehlers-Danlos Syndrome] It is degenerative and has affected my spine most of all, as well as most of my joints, causing them to degenerate, subluxate and dislocate VERY easily due to my body making defective collagen.

    I also have a disorder of my autonomic nervous system, Dysautonomia, which causes tachycardia at random times, and hypovolemia among others.
    I'm in a wheelchair about 80% of the time due to these.

  4. #4

  5. #5
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    Thanks
    I do not have an SCI; I have a genetic connective tissue disorder [Ehlers-Danlos Syndrome] It is degenerative and has affected my spine most of all, as well as most of my joints, causing them to degenerate, subluxate and dislocate VERY easily due to my body making defective collagen.

    I also have a disorder of my autonomic nervous system, Dysautonomia, which causes tachycardia at random times, and hypovolemia among others.
    I'm in a wheelchair about 80% of the time due to these.

  6. #6
    I’m awaiting the arrival of a new Tilite TR3. I have a SmartDrive right now that I really like. Especially because of it’s weight for transporting it. I also have a set of Alber E-Motion M-15 wheels. I’m getting the Tilite for my main manual chair, replacing a very old Quickie GPV. I also own two power chairs, and use one daily for going around our city and because our terrain is rural and we live on a steep street, I can’t safely take the manual chair independently to town. My other power chair has tilt recline and currently in storage in the garage. I was only able to use power chairs during the worst months/years of my illness, but there has been improvement to the point I can self propell and do great in a manual chair.
    I read and studied all the posts on the CAD Repository thread on this forum and it helped me when configuring my new TR3. And I made adjustments to my Quickie GPV to find what would work best on a new chair. I also have a decent amount of damage in my spine from a prior bad bike accident and have now found that I am as comfortable with a lower back of 12.5 inches at a 89 degree angle with two inch seat dump, and I can really relax my back muscles and feel relatively pain free. I have many buldging discs, bone spurs and arthritis in my back, and I found the exact place I can have my back rest height set at without irritation. Before I had tried an add on back which was 19 inches and lots of support but it also drove me nuts and I am actually the most comfortable in the current short back now!
    I have a three inch Roho Quadtro cushion on my manual chairs which help the chronic pain well, and I like sitting up a bit taller. Plus I am only 100 lbs at 5’8 so there’s no padding to my bum so a lower profile cushion was awful. And I am a bit like the Princess and the Pea, where I feel everything due to the pain disorder. The Roho Quadtro cushion has been awesome for me.
    I’m going to continue using the E-motion wheels on my GPV manual chair, inside the house on another floor. We have the complications of living in a three story house so I have a chair on every level, and two chair lifts. We designed and built the house ourselves about 18 years ago, when I had gone from hospice to a nearly complete remission which I thought was going to be the end of the MS, and I did well for a few years before crashing hard.
    And so we love our tall house and the view of the ocean, and have made it work.
    I can’t wait for the TR3. It will be so much better by leaps and bounds to the GPV and weigh so so much less. I’m hoping to get more opportunities to go with friends because of easier transport. I can’t drive due to Epilepsy and cognitive deficits.
    I’m sorry if this was too long. I’m never sure when to quit.
    Good luck with your chair!
    Secondary Progressive Multiple Sclerosis, Epilepsy, Head Injury, Chronic Pain Disorder

  7. #7
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    Jnanda,
    Actually perfect amount of info. I'm glad to hear it. Also happy to hear about your back height. I definitely want a lower height of back, 16" with my folder (the lowest they come) is way too high. Up over my armpits... I really have to make myself uncomfortable to get a semi-circle push, and still am not pushing as effectively as I should be. I think a shorter back with more lumbar support would be very helpful, because I tend to stretch backward fairly often and the height of my current chair is annoying.

    How do you feel about the Roho cushion's longevity? I'm really interested... but I have a service dog and one of his tasks is deep pressure on my legs... I keep his nails short but I'm still a bit concerned about the "bubbles".
    I understand what you mean about the princess and the pea/pain issues. I have quite a bit of pain as well, and while my chair is generally more comfortable than, say, a waiting room chair, it leaves a bit to be desired with its stretched out sling, etc...

    A chair on every level is smart. I'm sorry you ended up coming out of remission. :/ They thought I had MS before they discovered what I really have. I bought a one-story 3 years ago because I knew steps were getting harder and harder for me and have to have laundry on the main level either way. I'm glad you have a view of the ocean though, that must be beautiful.

    I'm excited about lighter/better transport options as well --- so I don't have to think about going with other people as much. I've found my folder takes up a majority of the trunk, even folded, whereas a rigid would work for our lifestyle better since my husband and I have cars.
    I just PM'd another kind member that I didn't plan on getting disabled (or laid off) when I got my Camaro... LOL. Not that anyone ever does but that's my "stupid joke" I like to tell. It's not exactly the most practical of cars... I do love it though... but fitting a wheelchair, kiddo and a service dog into it can be interesting. As of now I'm fitting it in the trunk and with the narrow opening everything has to be broken down. I'll be excited to throw it on the pax seat...I trialed a friend's this weekend and it really worked well.
    As for the layoff, it means I'm keeping the Camaro a while longer....
    I do not have an SCI; I have a genetic connective tissue disorder [Ehlers-Danlos Syndrome] It is degenerative and has affected my spine most of all, as well as most of my joints, causing them to degenerate, subluxate and dislocate VERY easily due to my body making defective collagen.

    I also have a disorder of my autonomic nervous system, Dysautonomia, which causes tachycardia at random times, and hypovolemia among others.
    I'm in a wheelchair about 80% of the time due to these.

  8. #8
    Have you seen the roho hybrid elite cushion, the front is a firm foam with a cushion cover and the seat is the roho bubbles. I have really liked with transfers since the front is firm and the front ebdge doesn't roll when sliding on.

  9. #9
    Senior Member Oddity's Avatar
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    You mentioned you've never been to a seating eval. That'd be my #1 recommendation. ATP certified. This site is great for feedback on products and setups, etc, but when it comes to what is ostensibly a medical prosthetic, you definitely need to couple recommendations from a medical professional with recommendations from end users.
    "I have great faith in fools; self-confidence my friends call it." - Edgar Allen Poe

    "If you only know your side of an issue, you know nothing." -John Stuart Mill, On Liberty

    "Even what those with the greatest reputation for knowing it all claim to understand and defend are but opinions..." -Heraclitus, Fragments

  10. #10
    Fly2Lo, finally getting back to this. I am a C7 complete and have been using a Tilite ZRa for 8 years. I have been pleased with the chair.

    I had a too-tall ADI back for several years and then switched it for a Ride Designs Java back that is shorter and with a deeper curvature. The too-tall back pushing on my shoulder blades caused a lot of discomfort. I like Java back but it's probably not the most weight sensitive back you can get. The mounting brackets allow for extreme adjustment possibilities at the cost of some extra weight.

    Since you mentioned a dog, consider getting Frog Leg Uni-Tine caster "forks". I had a Golden retriever and it constantly filled my conventional caster forks with hair. I got the Uni-Tine and they eliminate 100% of the hair on one side of the caster since there's no arm there and they somehow eliminate almost all the hair from the other side. Plus, they are a little easier on your furniture, especially when used in conjunction with the wider soft-roll caster. (And they look cool.)

    The Roho Hybrid Elite is a nice seat cushion. I used one until a few months ago and in 8 years only had to patch two small leaks, both easily repaired with the self-adhesive patches. The dog's claws will probably not be an issue because the front part of the cushion where the claws might touch is that hard foam-- the air cells will probably be behind your side guards.

    I recently switched to a Ride Designs Java seat cushion. I was diagnosed with worsening scoliosis and the Roho air cells allowed my hips to rotate which caused, or at least didn't prevent, the scoliosis. A seating expert could tell you whether this type (the Java) of seat could make your hip rotation problem worse. One benefit of this type of cushion is that it would eliminate the need for the rigid seat bottom since the cushion itself is rigid.

    I use the Out Front Compact Composite Scissor Wheel Locks. I like them a lot. They're very lightweight and they swing out of the way when disengaged.

    I don't know whether you need more grip than offered by standard metal push rims. If so I'd recommend Q-grips. They offer way more grip than standard vinyl coated rims. And they seem to be more durable then the other "grippy" rim options. I recently replaced mine with a new set after almost 4 years and I'm pretty hard on rims with a lot of downhill breaking getting these things pretty hot.
    Last edited by endo_aftermath; 07-23-2019 at 10:38 PM. Reason: clarity

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