I’ve never once heard of it yet. Only thing my daughter has is a shower chair.
I believe the statisic is 25%, but it doesn't mean in one 24/7.
Whoops. Just fact checked. It's 25% are considered disabled and unable to work.
It really depends on how severe the case is, and other illness factors.
Your right I have slight trauma to the brain from a cma, POTS and problems maintaining my oxygen on exertion which is still under investigation
I use one and was encouraged to by my dysautonomia specialist. It meant that I would be able to get out more and have a little more freedom without feeling like complete death trying to get through the stores. I don’t use it 24/7, just when I need it. I was passing out more and falling more, so it’s a bit of a safety issue too.
Same, I don't use one in my house, but out in public, so I don't make a scene fainting.
It definitely beats having to practically lay in the aisles of the store lol. At least I can lay in my floor in the comfort of my own home!
From personal experience it's only been when I've ended up in the hospital in which cases when nurses have said "your blood pressure is bizarre no you can't walk!" This has mostly landed me in arguments on yes POTS is a thing, yes I'm dizzy, yes 80% of the time I can walk with dizziness just fine unless it's suddenly onset. I think for women on their menstrual cycle due to blood loss it could be wise because every time I've been borderline black out it's because of my period.
Fibro and pots overlap minimum 60 percent, many with fibro can't walk, I need a wheelchair pt
I have a wheelchair. I use it for longer trips to places. Because I pass out so much that it’s safer for me if I’m going to be out longer that an hour.
I used one and now I don’t.
My cardiologist told me they avoid it until absolutely necessary so that as little leg strength and use is lost as possible. I use a walker with a seat when going out of the house. This way I have a seat if I need to sit down. I will stop and take breaks sitting on it as needed. If it’s bad enough, we will use one of the wheelchairs provided by an establishment.
Same here! Walker with a seat prescribed by my TBI neuro after the last really bad hit to the head. That walker with a seat has saved me so many times.
My son that is a Physical Therapist agrees it should be last case scenario & wants me as mobile as possible and not in a wheelchair.
My DD (age 17) doesn't, but we were at a dysautonomia/POTS event in October and there were a few in wheelchairs and a few with walkers. A few around her she and a few older
I've heard of it. I have a rollator that I need use sometimes.
I will use one if I need to (funeral recently, going to the zoo with my husband etc) but I prefer not to if I dont have to walk far, but if walking is involved or we are going somewhere busy eg Briscoes, we take the chair. I have ME/CFS too tho
I use one
I use one simply to allow me a life. To be able to walk the dog, tolerate shopping or navigate big hospitals, while carrying my stuff in tow. So much easier than with my crutches, and no need to take a break every minute. Also gives me some upper body exercise using a different muscle group
I use one around my house and on long trips. My specialist recommended it for flares and as a just in case for long excursions.
I use one for flying, every time.
This recommendation was accompanied with daily gentle physical therapy.
I have a walker with a seat for when I am going to be walking a lot. My friend with POTS got herself a wheelchair. If it is helpful for you, get one. Just because you have one doesn't mean you have to use it, and on good days you should avoid it. But some sort of mobility device is good for an as needed basis.
I keep a transport chair in my trunk just in case I have an episode and can’t make it out of a store or restaurant without fainting/falling
I use one part-time and it is a literal lifesaver. The kicker is that if you don’t need it, don’t use it, don’t become dependent on it because your health can decline. It’s great for long days or hot days
I have one. But I only use it when I am out and I know that I am going to have to walk or stand for a long period of him. That why my boyfriend don’t have to catch me when I pass out. My doc told me to stay out of it.
It took alot for me to give in and use a wheel chair when we went shopping. My husband insisted when I've been really sick. And it does make it physically easier during those times. However I feel embarrassed when people stare.
My daughter has a wheelchair to use when she needs it. This weekend she had a state speech competition at a very large high school, and she decided to bring her wheelchair. Had she walked throughout the school find the room where she performed at her event, she most likely would not have been able to stand or remember her lines (due to cognitive dysfunction) during her performance. She was glad she brought it. She also used her wheelchair for marching band competitions so she would have enough energy to stand to play her instrument. She is getting better about planing ahead to use it so she has enough "spoons" for what she intends to do. She uses it pretty rarely, though. She uses her walker a bit more than her wheelchair, but she generally tries to use no assistive devices whatsoever. I say that even if a person with POTS uses a wheelchair, it doesn't have to be used all the time by any means. That probably drives the likelihood up.
Had a great day at a festival, then bad, bad attack after eating on our way back towards where the car was as the rest of us popped into the washroom at a store. Found her on the floor in the makeup aisle. We were stuck there for an hour before she could even move. I ordered a transport chair the next day. If my husband was not there, I would not have been able to get her home.
I use one as needed.
My dr recommend a wheelchair or scooter for me.
I don't have one. On a bad day, I stay in bed most of the day.
I was in a wheelchair befoee being diagnosed because I was so bad. I got off the tilt table test with positive diagnosis and the doctor forced me to walk out of the hospital without the chair. I thought he was crazy. He said it was the worse thing I could do. Now I’m not saying not to use one if needed but I try and use aids as a last resort because I have learned that as hard as it is, it is better longterm for me to walk and take multiple breaks than to use a wheelchair because I never get better then.
Very similar experience !
I use a wheel chair only on long trips
I use a chair for long days and times when I can’t sit down or lay down, it’s a lifesaver on hot days for me and the only way I can travel safely
I have one but I only use it on bad days. There were a few months where I needed it everyday but I havnt needed it in like 2 months
There’s no shame in having to use a wheelchair if you need it,I’m looking into it too.
It depends on how severe your symptoms are. Some have to use wheelchairs for life others not so much or at all. I have had pots for 22 years. I have relapses and remissions. During relapses in the past, I had to use a wheelchair or walkers with wheels and seat out in public if lots of walking was required. I had to use a cane and forearm crutches for 6 years straight. I do light exercises, cardio to keep my legs strong and haven't had to use any aids for walking since 2006! If my legs are weak and painful, it is a rest day. I move slower if I am lightheaded that day. Just depends on how the disease is affecting you. Stay strong and positive about the future. We never really know what tomorrow may present. I take one day at a time.
Inconsistent and spontaneous.
My occupational therapist measured me up for one 2 weeks ago. Its being delivered on fri. Its either that or im house and bed bound.
I have a wheelchair for really bad days
I have pots among other things and I'm in a wheelchair more often then not
I have kids who have required a chair off and on over 20 years now .