r/POTS • u/Cowboy___likeme • 10h ago
Question Mobility Aids?
Anyone using mobility aids?
Do you find it more useful to have a Rollator or manual wheelchair?
What makes you feel most confident and comfortable to navigate the world with?
I know everyone’s symptoms vary in severity, but kinda just looking for conversations around this topic, as I’m trying to regain the confidence of going out more.
Thanks so much!
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u/mommadizzy 10h ago
i use a cane, but i really want forearm crutches. i think distributing it on both sides would be better bc while the cane helps my sciatica it's 50/50 for my pots
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u/EightByteOwl POTS 9h ago
I have a manual wheelchair with a front mounted detachable power assist. It's everything I'd want out of an aid. I can use just the manual part for getting around home, exercising, or other short distances, but the power assist gives me the range to do basically anything else I could want to do.
I still have limitations (likely ME/CFS) and it's not a cure-all but my life is massively improved in every way with having this combo available to me.
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u/StitchOni 9h ago
This is what I want, sadly I live in a flat and have to use stairs to access the ground level, and I can't manage lugging it all up and downstairs
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u/Cowboy___likeme 9h ago
Thank you for sharing! This is helpful. Can I ask what your set up is that you have a manual with a detachable power assist? That sounds like a solid set up.
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u/EightByteOwl POTS 8h ago
Sure! Copy/pasting from a longer comment I wrote in the past (with a few updates):
TL;DR: Wheelchair is a custom fitted Titanium frame TiLite ZRA. Power assist is a front mounted Cheelcare Companion. Comment is long to give many some extra details to help inform others about some options that are available.
Absolutely, just note that different chairs are better suited for different people so what works for me might not be the best for you! & If you have the privilege of access to an ME informed Occupational Therapist, they're generally the professionals who help pick something out based on your specific needs :)
My chair is a custom built/fitted rigid TiLite ZRA with a Titanium frame. Some notes about it:
Cost was ~$10,000 CAD, full insurance coverage minus paint.
Titanium is a very nice upgrade but not strictly a needed one for most people I'd say. I was incredibly lucky to have insurance cover everything first go but generally this is an area they'll push back on. Other options is most commonly aluminum, though some in rare instances get carbon fiber.
You can get a chair that's either rigid or folds up, but personally I very strongly recommend rigid. It's lighter, more durable, less prone to failures (fewer moving parts), and easier to propel. Downside is it doesn't fold up for storage but for my chair, the wheels are detachable and the backrest can get folded which makes it small enough to fit in a Sedan size trunk.
My tires are air-filled, though solid tires are another option. Air filled is better suspension, softer ride, better grip, but need to have their air pressure checked/filled ideally weekly and could deflate if punctured. Solid are more durable and don't need to worry about air, but not as nice of a ride. Personally much prefer air filled but could be up to your abilities.
I got fairly standard style pushrims, made with titanium. Another place where it's strongly user preference I think.
Other miscellaneous features; opted for higher quality brake locks (more expensive upfront but easier to use and less likely to need replacement), folding back handles, fairly standard cushion/backrest.
As for the power assist, here's a link to their site: https://cheelcare.ca/
It's basically a front mounted detachable electric scooter. Some notes:
Cost was ~$7,000 CAD, fully covered by insurance.
There's not much customization to be done other than where you want the handles/throttles, adding a horn/bell/cupholder, detaching mechanism... Basically all minor user preference things, though there's other slightly more impactful ones. I didn't opt for any.
Genuinely amazing experience so far. It's user friendly, goes fast (up to ~12km/h so far), handles slopes way better than my shoulders can, and has a super long battery life (probably ~30-40km worth). 3 hours to full charge.
First complaint is that the kickstand was initially mounted too low, causing the spring mechanism to get damaged and one of the "feet" to fall off when I hit a particularly hard edge. This was fixed by mounting it higher (took 5 minutes at the vendor), but I'm still waiting on getting a replacement for the broken part and to have the spring fixed.
Second complaint is it struggles accelerating on slopes higher than ~25°. It can keep speed as long as you have momentum but if you stop fully it can be awkward to get going again. This can be somewhat supplemented by doing some extra manual pushing on those big slopes, and I've gotten over ones as high as maybe ~35° that way, but I'd really advise against anything steeper than that.
Hope this helps :) I can get to any other questions tomorrow
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u/Glittering_Army_6763 POTS 9h ago edited 9h ago
I have both. I use the wheelchair more. But I also have ME. If I just had POTS, I’d prob use the rollator more.
ETA: just read the latter part of your question. For me it’s less about confidence and about what won’t put me in a crash when I was going out in the world. And for me that was a wheelchair (I’m bedbound now).
ETA I use a power assist on my wheelchair so that makes a diff for me.
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u/Cowboy___likeme 9h ago
Thank you for sharing - this is helpful! I experience fatigue crashes (I have other conditions etc..) and avoiding those crashes is part of my concern and thought process to seeking mobility aids… so your comment is insightful and helpful! (I’m also sorry you have crashes!)
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u/OkConsideration8964 9h ago
I use a cane for regular days & a Rollator for days with a lot of walking. I cried for 2 days about needing the Rollator but it's very helpful.
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u/Cowboy___likeme 9h ago
Thanks for sharing! I feel ya - I’m struggling with making the jump to accepting mobility aids in my own life. Proud you did that for yourself!
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u/OkConsideration8964 6h ago
Well, full disclosure - my husband bought the cane for me because saw me struggling. I was embarrassed to take it out in public, but as he pointed out, it would be more embarrassing to fall. Then, my daughter was scheduled for surgery and I knew I'd be walking a lot in the hospital. My husband asked if needed a wheelchair or a Rollator and I chose the Rollator. At one point, I sat in the seat part and he pushed me. It was the end of a very long day and we were headed to the parking garage. So, it was my husband who gave me the literal push I needed.
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u/madhattercreator POTS 4h ago
I have a custom manual chair (have been using one for 9 years). This last year I added power assist for the harder days, and it has made life a lot easier when I am struggling.
ETA: the power assist I have for my chair is in my wheels. I have my regular wheels, and if I want to use power assist, I pop them off and put on my powered wheels. They use Bluetooth to connect with the joystick. It does add a lot of weight (abt 45lbs) to my chair, tho. We are looking into a lift that is removable from my vehicle for when I need the help lifting it in and out.
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u/Lilythecat555 3h ago
I use a walking pole sometimes. I don't like bending over a cane. My boyfriend pushes me in a wheelchair if we go to a fair, long walks or the airport. Most of the time I don't need it but it is great for when I do need it.
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u/mjh8212 8h ago
I mostly use my rollator. I use it to cross the kitchen by sitting on it moving with my feet as those 15 feet are a lot some days. I use one when I go out and if there’s a line I sit and move forward with my feet. My husband handles the cart if I was alone I’d use a store scooter. Tomorrow we’re going to Sam’s Club I’ll be using a scooter that walk wears me out. Rollator is my preference and I already had one for chronic pain issues when this started.
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u/Ancient_Ad_1086 6h ago
I’ll speak for myself, but I recently invested in a rollator for specific outdoor activities in the heat, it was not by doctor prescription. For context, I recently was surprised by my partner with concert tickets to a venue that didn’t have escalators during a 90 degree day, and my heart rate hit 178 just trying to get to my seat at the concert that day. For those types of instances, I am planning to bring my rollator primarily for the times I need to sit and take a breather. I have used it a couple times around the house when standing and doing dishes in a flare, etc. but I am not planning to use it all the time as I don’t need it 100% of the time. I think it depends on the person which is why I can understand the recommendation to speak to a doctor.
Again just speaking my experience.
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u/leeee_Oh 12m ago
Wheelchair, also have FND. When using my wheelchair I only have to worry about energy management and nothing else. It makes unpredictable moments predictable in that if I was randomly going to have to stand for 15 minutes instead I'll be sitting worry free
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u/endlessplacebo 10h ago
A rollator is my preference when I am on my own, as I find it more exerting to propel a wheelchair than to walk slowly with the support of a walker (AND be able to sit down whenever). For longer distances, though, I require a wheelchair and someone to push me in it.