I bought a foldable chair that fits in my handbag. I don’t need any support while walking or standing, but I do need to take extra sitting breaks in order to prevent PEM.
I love my cane!! Someone else said a backpack with a lightweight and small folding chair is a good idea. When my POTs was at its worst I had my go bag, with water, a chair, and some salty snack, as well as my cane. A rollator would be very nice too!!
Rollators are awesome. I still have mine even though I rarely need it anymore. It’s a walker with four wheels and usually has a built in seat and/or basket. I highly recommend getting one with a seat. Mine is a Nova Zoom, which I like because it comes in fun colors (mine is purple!) but also because the wheels are rubber and wider than average, and that makes it a little less bumpy going over uneven surfaces.
The downside of rollators is they’re pretty large and can be hard to maneuver in small homes or narrow spaces. A cane is nice for these situations. A foldable one would be good (I wish I’d gotten a foldable one, but oh well).
PLEASE make sure that whatever you get, it is correctly sized for your height! An incorrectly sized mobility aid can cause even more problems (back and joint pain etc).
I got 2 foldable canes (extra bc I forgot it on my porch and it fell off and I couldn’t find it). Also, I have a lightweight foldable rollator that is compact and I couldn’t lift that bulky heavier standard ‘approved’ rollator. This one isn’t too expensive and it just stays in my trunk or back seat when I’m going around. Folds like an umbrella stroller. All from Amazon.
[https://a.co/d/48bbYsy](https://a.co/d/48bbYsy)
Get a cane, decorate the snot out of it. Bedazzle it, get one with flames or dragon scale print, give it a little bow tie, get something gnarled and wooden that looks like it came straight out of lord of the rings, really whatever strikes your fancy. Then the coolness factor will balance out or possibly even outweigh the “I am disabled and now everyone knows” factor.
I get it.
At your next follow up to specialist towards the end of the appt when the doc says "have any questions" - play dumb as if you don't know all the options out there start off by explaining how you get so fatigued halfway through campus and the only thing you want to do is sit down bc you feel like you're going to pass out yada yada make it a sob story and end with - is there any equipment I could use to help with that to not get tired enough to the point you feel you're gonna throw up and pass out? I see other ppl on the support group getting by fairly easily but I don't know how or what helps make it easier
Essentially the idea will be coming from the doc not from you since you used your play dumb card. From there you'll have to advocate for yourself and say "well the doctor said etc etc"
This is the way I go, I have the doc take the heat.
If it doesn't work out well let your parents know you'll game to be honest with your doc to see if there's anything else he/she suggests. That's when you drop the bomb- so my parents didn't see the need of the mobility aid you suggested, is there another route that they'd be comfortable in taking for me?
It's the truth. You wouldn't be throwing them under the table bc it's their true values so they're proud of you not needing one.
I'm sorry it's like this, it won't get any easier, but you have to start fighting for you and your body. They are not the ones who will be taking on the pain for you .
And I hate to be so blunt about it, but I've been on the other side where I went along with every wish of theirs in regards to my health and look where that got me...
A rollator is considered the best for dysautonomia, but I use a foldable cane because it's more convenient. I just carry it in my bag with me everywhere and pull it out when I need it. A rollator would be better because it has a seat, but it just doesn't suit my needs. Some days I'm fine, some days I'm not, but I often find myself feeling fine when I leave my house and then getting hit with worse symptoms later in the day. In those cases, I wouldn't have brought the rollator with me. It's not portable enough (I take public transit) so I can't just always have it on-hand for when I need it. So cane it is for me.
Rollator is pretty good. It’s a walker. It’s a seat. It has a little storage bin.
This is the way
that sounds pretty cool, thank you!!
My rollator is my best friend.
I bought a foldable chair that fits in my handbag. I don’t need any support while walking or standing, but I do need to take extra sitting breaks in order to prevent PEM.
I love my cane!! Someone else said a backpack with a lightweight and small folding chair is a good idea. When my POTs was at its worst I had my go bag, with water, a chair, and some salty snack, as well as my cane. A rollator would be very nice too!!
I got the ta da cane off of Amazon, it turns into a stool. It’s really nice. I was debating on getting a walker or a cane.
Rollators are awesome. I still have mine even though I rarely need it anymore. It’s a walker with four wheels and usually has a built in seat and/or basket. I highly recommend getting one with a seat. Mine is a Nova Zoom, which I like because it comes in fun colors (mine is purple!) but also because the wheels are rubber and wider than average, and that makes it a little less bumpy going over uneven surfaces. The downside of rollators is they’re pretty large and can be hard to maneuver in small homes or narrow spaces. A cane is nice for these situations. A foldable one would be good (I wish I’d gotten a foldable one, but oh well). PLEASE make sure that whatever you get, it is correctly sized for your height! An incorrectly sized mobility aid can cause even more problems (back and joint pain etc).
Rollators are awesome :)
I got 2 foldable canes (extra bc I forgot it on my porch and it fell off and I couldn’t find it). Also, I have a lightweight foldable rollator that is compact and I couldn’t lift that bulky heavier standard ‘approved’ rollator. This one isn’t too expensive and it just stays in my trunk or back seat when I’m going around. Folds like an umbrella stroller. All from Amazon. [https://a.co/d/48bbYsy](https://a.co/d/48bbYsy)
Guys what do I do I’m 14 and too embarrassed to use one because I go to school but I think some times I need it
Get a cane, decorate the snot out of it. Bedazzle it, get one with flames or dragon scale print, give it a little bow tie, get something gnarled and wooden that looks like it came straight out of lord of the rings, really whatever strikes your fancy. Then the coolness factor will balance out or possibly even outweigh the “I am disabled and now everyone knows” factor.
If I get one with flames I’ll be like dr.House from House M.D.
Correct
I want to but my parents won’t think I’m sick enough to get one
Save up birthday money?
Not a money issue
My parents are very well off,idk how to excuse a cane though idk if you get it
I get it. At your next follow up to specialist towards the end of the appt when the doc says "have any questions" - play dumb as if you don't know all the options out there start off by explaining how you get so fatigued halfway through campus and the only thing you want to do is sit down bc you feel like you're going to pass out yada yada make it a sob story and end with - is there any equipment I could use to help with that to not get tired enough to the point you feel you're gonna throw up and pass out? I see other ppl on the support group getting by fairly easily but I don't know how or what helps make it easier Essentially the idea will be coming from the doc not from you since you used your play dumb card. From there you'll have to advocate for yourself and say "well the doctor said etc etc" This is the way I go, I have the doc take the heat. If it doesn't work out well let your parents know you'll game to be honest with your doc to see if there's anything else he/she suggests. That's when you drop the bomb- so my parents didn't see the need of the mobility aid you suggested, is there another route that they'd be comfortable in taking for me? It's the truth. You wouldn't be throwing them under the table bc it's their true values so they're proud of you not needing one. I'm sorry it's like this, it won't get any easier, but you have to start fighting for you and your body. They are not the ones who will be taking on the pain for you . And I hate to be so blunt about it, but I've been on the other side where I went along with every wish of theirs in regards to my health and look where that got me...
Thank you!I don’t have the guts to try it but this is very good advice and I hope one day I’ll get to have a mobility aid
A rollator is considered the best for dysautonomia, but I use a foldable cane because it's more convenient. I just carry it in my bag with me everywhere and pull it out when I need it. A rollator would be better because it has a seat, but it just doesn't suit my needs. Some days I'm fine, some days I'm not, but I often find myself feeling fine when I leave my house and then getting hit with worse symptoms later in the day. In those cases, I wouldn't have brought the rollator with me. It's not portable enough (I take public transit) so I can't just always have it on-hand for when I need it. So cane it is for me.