Wheelchairs?

[EarthMother]

I can't count how many times I've gone into a long POTS hole and have been unable to get around for months at a time. But I seem to be approaching a year and a half on this go and I'm not really sure what I can expect as I move forward.

I understand that I have other health issues in addition to POTS. I work with a therapist twice a week who helps me get out of the house, which has been a challenge when I have felt so ill. So as I get stronger and we drive around to more places ... I get to look at what pieces of my illness are because I have POTS and which are peripheral to anxiety.

I have enough trouble getting up and downstairs in my home. And I have had to resort to jury-rigging my whole kitchen so that I can prepare foods on the floor because even sitting up at a chair or being at the counter for more than a minute is impossible. I can however clean the entire kitchen floor from a squat position with a sponge and a bowl of soapy water. So I *CAN* do some things ... but standing/walking aren't on the list. So then when I drive to the market with my therapist and she says "Let's go inside!" I think what on earth am I going to DO in that store? Walk through the doors, get exhausted and turn around and sit in the car. Yep! That's what I decided to do yesterday. I hadn't even stepped into a store for probably a year ... but I miss it so and am trying so hard to see what pieces of my life I can reclaim. So I rested in the car for a good while, then got up and walked into the supermarket. It felt SOOO good to be there. I wanted to walk down the aisles and touch everything. But simple fact was I couldn't. My body just couldn't handle being upright ... so I stood there for a bit and enjoyed all of the sights and sounds and then went back to the car. Before I did, I thought about using one of those "electric" carts they have at some stores now-a-days. But the steering is so far from the seat that it is a stretch for me to get and hold my arms up like that.

I was thinking maybe I'd rent a manual wheelchair for a bit just to see if it helps me get out and do some of the things my mind thinks it wants to do.

Any one else use a chair periodically for their POTS? Anyone have any luck getting insurance (e.g. BlueCross) to pay for it? Is there one kind of chair that works better or worse for autonomic imbalance issues?

[Chrissy]

I bought a wheelchair about a year ago for when I went some place that required alot of walking. I find I use it more and more lately even for simple in and out trips to the store. My insurance paid all or most of it, I don't remember. I'm pretty sure the insurance wanted to buy it and not rent it. Pots is a cardio condition and that entitles you to certain perks (wheelchairs, handicap plaquards) I called my insurance company and just asked "If I needed a wheelchair, do they cover the cost?" they told me if my doctor felt I needed one they would most likely cover the full cost. You just need your doctor to write a prescription for one and find a place that sell them. I find using the word autonomic dysfunction is in the disability book for getting a wheelchair.

I can't count how many times I've gone into a long POTS hole and have been unable to get around for months at a time. But I seem to be approaching a year and a half on this go and I'm not really sure what I can expect as I move forward.

I understand that I have other health issues in addition to POTS. I work with a therapist twice a week who helps me get out of the house, which has been a challenge when I have felt so ill. So as I get stronger and we drive around to more places ... I get to look at what pieces of my illness are because I have POTS and which are peripheral to anxiety.

I have enough trouble getting up and downstairs in my home. And I have had to resort to jury-rigging my whole kitchen so that I can prepare foods on the floor because even sitting up at a chair or being at the counter for more than a minute is impossible. I can however clean the entire kitchen floor from a squat position with a sponge and a bowl of soapy water. So I *CAN* do some things ... but standing/walking aren't on the list. So then when I drive to the market with my therapist and she says "Let's go inside!" I think what on earth am I going to DO in that store? Walk through the doors, get exhausted and turn around and sit in the car. Yep! That's what I decided to do yesterday. I hadn't even stepped into a store for probably a year ... but I miss it so and am trying so hard to see what pieces of my life I can reclaim. So I rested in the car for a good while, then got up and walked into the supermarket. It felt SOOO good to be there. I wanted to walk down the aisles and touch everything. But simple fact was I couldn't. My body just couldn't handle being upright ... so I stood there for a bit and enjoyed all of the sights and sounds and then went back to the car. Before I did, I thought about using one of those "electric" carts they have at some stores now-a-days. But the steering is so far from the seat that it is a stretch for me to get and hold my arms up like that.

I was thinking maybe I'd rent a manual wheelchair for a bit just to see if it helps me get out and do some of the things my mind thinks it wants to do.

Any one else use a chair periodically for their POTS? Anyone have any luck getting insurance (e.g. BlueCross) to pay for it? Is there one kind of chair that works better or worse for autonomic imbalance issues?

[Ernie]

Hi,

I paid for my manual wheelchair and my insurance paid 80% of the powerchair. I was homebound for 5-6 years before I got my powerchair. It did not want any for years and I was always hoping to get out of the slump. But after years of being homebound I decided it was time to act. I am very happy to be able the leave the house alone now. I can't push my regular wheelchair because of the muscle weekness so I use that one only when I am accompanied.

[Guest tearose]

EM,

Wow, you went to a supermarket. That is a big accomplishment with all you have had to do to get to this point! I am deeply moved. I do really understand how much effort and work and letting go all this took!!!

I remember as my last relapse worsened, last November, I struggled with my seat cane being adequate. I thought about a wheelchair but figured one step before that would be for me to consider a rolling seat walker type device. I put that out to you to consider. Could you manage with one step before a wheelchair? If not, then try to rent a wheelchair for a bit like you were thinking. There are so many types, renting will allow you to see what works best without the big investment.

I wish you increasing strength on your healing journey, thank you for sharing this milestone with us!

Lovingly,

tearose

[EarthMother]

Awww Tearose. Thank you. It was a big accomplishment for me, it's just hard for me to admit that. Thank you for cheering me on.

Salubrious.

~EM

[dizzygirl]

EM

i use a powerchair.. and my insurance paid for it in full (right before all those medicaid/medicare changes where made in 2005) Uhm like i said my is a powerchair.. and it has a manual recline lever on it..

uhm my doctor had to write up orders and send them over to a rehabilitation store (that sells medical equipment) and the guy who handles that stuff met with me.. to see what i needed.. then i had to meet with a physical therapist to eval me.. and allow me to explain pots and how it affects my day to day living and mobilty IN my home...

Uhm the whole process took me a good 6 months or so i think

and my insurance CO. paid for the chair in full.. i paid no out of pocket exspenses.

I currently am going thru the process again.. as i need a fully reclining power chair that is all power no manual to it...and this process is kinda the same steps.. only is going alot quicker! then before....

good luck to you....

[mkoven]

I have a range of options-- both for my orthostatic intolerance and ehlers-danlos bad joints. We have a manual wheelchair which insurance paid for. Had it for 4 years. I have to be pushed as it hurts my upper body. I've recently injured my hip for the umpteenth time, so my husband pushes me when we go somewhere that involves walking more than a couple blocks. At work I have a scooter in my office for getting around campus. I think we paid for it out of pocket, because I wasn't sick enough to have it covered. but it let me get to the classrooms where I teach, so we figured it was a good investment if it meant I could keep my job and continue to draw a salary. I leave it there, because it's a nightmare to disassemble and put in the car. I also use a rollator for joints and ans stuff regularly. I love it. Bought it online and it gives me the courage to go out, because I always have a seat. I frankly don't know how I managed before. I have a seatcane, but my joints need more stability, so I only use it on really good joint days.

but I like being prepared for all levels of uprightness and mobility. I refuse to be cooped up at home--every day,i feel like I need to get fresh air and see human beings away from home, even itf it's just the guy at the counter at Starbuck's. it really lifts my spirits. But I need to be places where I can drop down or sit as needed, social convention be darned. there were times over the summer when my ans issues were to bad to eat out-- I was having too many episodes and didn't want to lie on the restaurant floor. So we got creative-- we'd pick up carruyout and have a picnic (only works when it's warm and light) and I could lie down on the grass or a picnic bench. We'd go to friends' houses who understood that I might end up lying on the floor.

but I would be unable to get out and about without these options. sometimes we'll have both the rollator and wheelchair in the car, in case things take a turn for the worse. I really believe in being prepared and then still trying to do the things you most want to do, even if it's a little unconventional. (People always react strangely to see me stand from the wheelchair, or see that I don't necessarily walk like I'm crippled.I don't usually explain, unless asked.)

[Rachel]

I have a wheelchair in my house and a wheelchair that stays in our van for whenever I'm out. I almost always use the wheelchair when I leave the house. The exception is if I go into a very small store or into a friends house; then I use a rollater walker. It helps me to balance, and there is a seat if I need to sit down. I can't walk far, so my wheelchair helps me on all other outings. I'm not strong enough to wheel myself in it, so my husband pushes my chair. It is so nice to be able to go into a store, go around the mall, or go into a movie theater every once in a while. I could never ever do those things without the wheelchair.

There are times that I use the scooters provided by large stores. I can only use them on a "good" day because like you say, the handles are quite a reach (and I'm tall and have long arms! I don't know how shorter people can use them at all!). I would love to have my own scooter, but that is a huge insurance hassle that I'm not up for fighting right now (although your insurance may be another story).

I can't maneuver around in a manual wheelchair. It is very hard. Carpet, bumps, or the slightest incline really make it hard. We used to live in a house with wood floors. That was great for getting around in a wheelchair! We live in a very small, carpeted apartment now, so I rarely use the wheelchair. It uses less energy to walk. I use a rollater walker when I need extra help with balance, or when I'm especiall weak. (My 3 year old can tell when my health is bad enough, and he goes to get my walker for me!)

I purchased both of my wheelchairs out of pocket. 4 years ago when I first needed one, I didn't have any insurance at all. We found a brand new one for about $200. It was a fairly good chair, but it wore out quickly because I used it so much. We took it over gravel, dirt, snow, ice, etc., so it really got beat up! Two years ago I purchased another wheelchair. I got the same model, but this time I opted for the elevating leg rests. This is a big help for me. It doesn't raise my feet up as much as I'd like, but it certainly helps. It doubles the amount of time that I'm able to sit in my wheelchair, which is really nice for those days when I'm up for an outing.

Everyone's insurance is different. I hope that your insurance will be willing to pay for a wheelchair for you. They can really be helpful.

Rachel

[momofsara]

We were able to get a wheelchair for Sara by her PCP writing a prescription for it. Medicaid paid the whole thing. Now, keep in mind this isnt a power chair, its the traditional wheel chair which I push for her. Its been a real help, though, for taking her to doctor appts. and even getting her into a store for a short visit. She wasnt in a store for almost a year, either. She kinda feels like a "bird out of a cage" now that she has her "wheels". I truly hope you can get something to help you be able to get out more. I'll be holding you close in thought and keeping positive vibes coming your way. Susan

[morgan617]

My blue cross paid all but the deductible for my power chair. The store actually did all the paper work with the doctor, and it went through quickly. Because I now paralyze and stuff, even the chairs aren't especially safe, but did want you to know, it wasn't that hard to get them to cover it. Good luck sweetie. morgan

[shelby]

I have a wheelchair and I use it less now that I am feeling a little better, but I lucked out and got it at a Garage Sale. Some people thought it was gross to buy a used chair, but it was only fifty bucks and it paid for itself right away. Sometimes in our state newspaper I come across ads for wheelchairs so that might be a thought.

shelby