When did you decide you had to use a mobility aid?

[BusyMamato5]

Just interested to know when you all thought or was told you had to use a mobility aid.

 

[Dainty]

I'm not sure how to vote; I'm diagnosed but received no instructions or suggestions on mobility aids, just used common sense - I needed it so I got it (both wheelchair and stick).

 

[ukxmrv]

I'm diagnosed and all my mobility aids were ones that I found for myself. The reason I want to use these aids is to increase my mobility and stop my self falling over and getting injured. I've got different things for depending on how weak I am.

The NHS in the UK did assess me for and supply a wheelchair but it was hard for me to get an appointment and be taken seriously by my GP. The physio who did the wheelchair assessment was very good. I had already decided that I needed one.

 

[Sallysblooms]

I am diagnosed with CFS and POTS. I didn't have anything with my CFS, but when I started with POTS, there was absolutely no choice. If I wanted to moved around the house and then leave the house when I got a bit better, I had to have a wheelchair, could not stand since blood did not stay in my head. I have a w.chair for inside our home, one we keep in the car and two folding seats for smaller stores. I can stand and walk much better now thankfully, but always use my w.chair for stores like Petsmart, going to church etc.

 

[Tammie]

I'm diagnosed but I had to ask my Dr for a script for a walker....did that when I started having more problems with OI

and I just got a wheelchair....didn't ask Dr about that bc medicare won't cover it unless it is needed inside the home (apparently never leaving the home does not matter to them even if one lives alone and cannot survive without being able to get groceries, etc).....I live in an apt where a chair can not be used and I manage to get where I need to even if it means crawling; however, I definitely need it to be able to be outside of my apt and in an upright position for any length of time (bot bc of the OI and the ME)

it took me over a yr from the pt where I felt like I needed one to the pt where I actually managed to research what is available and to figure out how on earth to pay for something that cost double my monthly income (couldn't get a cheap one bc they weigh too much for me to be able to get in and out of my car)...and it also took awhile to deal with the need for one......I really, really did not want to get one

 

[SpecialK82]

This is a great thread and something that I have been thinking about alot lately. I don't feel like my doctor wil advise it, but I am already struggling when I'm in stores to be able to stand and walk as required. Pyschologically, I'm having a hard time taking this step. I'm not even sure how to go about getting a wheelchair in the US. Can someone advise me?

Do I have to get a doctor to write a script for it? And then would insurance pay for some of it? Are the outrageously expensive? Are most people using a power chair or one that they have to push themselves? I don't have the strength to wheel myself around manually I don't think....

 

[justy]

Hi, although i can walk even for a while i have just decided to rent a wheelchair for my first holiday in a few years. we are not travelling far, but going out and walking around attractions/shops etc is exhausting and if i did it once would be in bed for the rest of the week. Ive decided that if i had a wheelchair i could walk a bit and sit a bit when i needed to and hopefully get out more. Otherwise i saty at home and only drive to a shop and park outside and go in, thats no life.
Psychologically though its a biggie, i do feel weird about getting in and out of a wheelchair wehn i can walk but am so looking forward to some longer and more intersting trips out with my family. Anyone else in this position. I dont use a stick as its exhaustion and PEM that is the problem.

 

[Sallysblooms]

I don't feel weird getting in and out of the w.chair when we go on shopping trips. There are many people who have to use one for maybe a bad back, knee, whaetver. It is just a tool like any other for me. I can do a lot more when we are out when we have one. I didn't need it today. We went out to eat, and short trips to the pet groomer, bank and then I went into Chico's to buy some blouses. I did take my folding seat to several places. My POTS was very good today!

Special K, you don't need a prescription, we just bought both our ours. Maybe if you use insurance or something for one you need it though. We just bought them at wheelchair stores.

 

[MEG]

Wonder if this helps....

I recently needed home health care. The Physical Therapist asked me what assistive devices would help. She suggested a four wheel walker, raised commode and wheelchair...each to be used as needed. Guess what!!!! MEDICARE paid for all but $46!!!!!!! For all three devices. I was amazed.


I have had HUGE psychological issues using assistive devices. I finally gave in. I am even using the scooters at any stores that have them...my husband, who usually does all shopping, is in the hospital. I HAD to get out for groceries and meds. Now, I am almost over the emabrassment of using these scooters! I have fun, and laugh with fellow shoppers about my (scooter) driving! So, now I wish I had my own scooter, but cannot afford one. Any ideas about how to get Medicare to pay for a scooter??? Just an idea...not that I get out much. Maybe I could "scoot" down the street on good days!

Hope anyone who needs a W/C can get Medicare to pay...I guess, be assertive with your doctor. And know that I got them to pay!!!!!

 

[Tammie]

NOT anyone who needs a wheelchair can get medicare to pay - it depends on if you need it for inside the home or not......I checked into this thoroughly and it has nothing to do with my Dr - they do a home assessment and if you cannot use it at home like me (my apt is not wheelchair accessible), they will not pay......MEG your home health care person probably had a lot to do with your getting it covered

 

[Tammie]

This is a great thread and something that I have been thinking about alot lately. I don't feel like my doctor wil advise it, but I am already struggling when I'm in stores to be able to stand and walk as required. Pyschologically, I'm having a hard time taking this step. I'm not even sure how to go about getting a wheelchair in the US. Can someone advise me?

Do I have to get a doctor to write a script for it? And then would insurance pay for some of it? Are the outrageously expensive? Are most people using a power chair or one that they have to push themselves? I don't have the strength to wheel myself around manually I don't think....

If you just want to buy one, you don't need a script.....if you want your insurance to cover it you may need one

I didn't know if I would be strong enough to wheel myself very well either but no way could I afford a scooter , esp given that I woudl then need a device to attacht it to the outside of my car; however, the chair I got is super lightweight and wheeling it around is extrmely easy.....getting it in and out of the car is hard, though

I think your first step should be to check with your insurance to see what their policy is re wheelcahisr, bc if they will coevr it the may limit the amt they will pay, the type they will cover, etc.....you need to know that before you do anythign else

if they will pay they also may have some suggestions re finding the rt one for you......if not, it is really all about research bc absolutely every last little component on a chair can come in a variety of materials, sizes, etc (for exp just looking at the big back wheels: the tire itself comes in several types of materials and a couple of grips, in air filled, and solid rubber, and air filled but not able to leak/blow out, the spokes come in different materials and designs, the handgrip comes in different materials, and then there is the size of the wheel and how much tilt you want on the wheels - angling them a bit helps a ton with maneuverability........and like i said that is just the back wheel, every componemt has more than one option)

........once I knew that medicare would not coevr mine I started looking up online just to see what's out there, and I tried to find a store nearby where I coudl actually try things out (there was no store so the whole process was a lot more challenging)

.....then I started researching each separate compnoent and trying to determine what woudl last the longest, be the lightest, fit in my car, fit me, etc......then I also ordered several catalogs and looked thru them......them I called the place that had the chair I decided woudl be best adn spent a ton of time on the phone asking mroe questions (which I had written down ahead of time) and finding out how to measure for each part......then I measured, had someone else meaure me, and remeasured a couple of mroe times (measuring is not as easy as it seems and when you are speong money on somethign liek this you want it to be rt)

anyway, that is the process i went thru.....if you have someone to help push and get it in and out of the car, and if you are not in a lot of pain, you could get a more basic chair and maybe not have to deal with all that

also you will most likely need some help when it comes if it is customized at all, bc things will need adjusted and put together and simply getting the parts out of the box was very difficutl for me

 

[SpecialK82]

Thanks so much Sally and Tammie Wow, I had no idea that there was so many choices in wheelchair parts. It's all pretty overwhelming, spending alot of money, definitely want to get it right. It would be nice to have a store to try it out first, I'll have to look into that.

I have thought about the hassle too of getting it in and out of the car, so maybe short trips it would be easier to walk. There are so many things that I have given up due to inability to stand very long, like museums...I can see where my quality of life would be greatly enhanced with some assistance. I also like the idea of walking some and sitting some, in stores. Thinking about getting a handicap placard for my car too, even if I'm walking. Sometimes just the walk across a big parking lot is too much.

 

[fla]

Why I got the wheelchair: My POTS was getting so severe I was getting dizzy after a few minutes of standing. Irregular heart beats, palpitations, fibrillation even when lying at rest. My doctor told me my heart didn't sound right and convinced me to see a cardiologist by mentioning things like "people dropping dead". My condition was getting progressively worse. Doctor asked if I considered a wheelchair.

How I chose the wheelchair: Called the insurance company and they say they covered a basic model. My wife went to the store and they told her which one (a basic model) to pick for the insurance company to accept. No doctor's note was required as "nobody would get a wheelchair for fun".

Result of using the wheelchair: My heart has stabilized so it's no longer struggling at rest. My POTS and general condition has stabilized which is great news after a year of decline and not much more room left to drop any further.

Recommendation: If every outing (doctor visit etc...) that requires a certain amount of standing/walking triggers PEM requiring a day or two of recovery time to return to baseline, you may well be gradually lowering your baseline. Either get a wheelchair or reduce the standing/walking enough not to trigger PEM.

 

[Sallysblooms]

Fla, I agree, using a wheelchair for doctor visits, going to a large store etc. is very good. What a difference it makes not to overdo when going to the doctor, shopping is hard with POTS. It really does help you stay stable and makes a hard trip not bad. I always say it is just a tool, like any other tool. Just makes life easier. Just like our cars make you not have to walk, a wheelchair does it also.

It is a kind thing to do for our body. Less stress. I walk in my house, but I use my wheelchair I keep inside to do things that take time in the kitchen. At my worst, I needed it ALLL the time in the house. I am improving and part of the reason is my chair. I have the folding seats also now since I don't need my w.chair as much.

 

[Misfit Toy]

For those that can't afford wheelchairs, there are used ones. Check it out on Craigslist or put an ad up for one. So many people have elderly parents or grandparents and they don't know how to get rid of them so they throw them out!!! Or, donate them to a hospital. Put an ad in the paper. No joke. People will take next to nothing just to get rid of it.

This is a great thread.

 

[taniaaust1]

There needed to be one other option in that survey.. that being Im diagnosed, but use aids due to common sense.
......

I dont have my own mobility aid but would of got one in the past if I'd been able to as I sooo needed one (I couldnt stand in a queue longer then 10 seconds at one point when I still was going out to do shopping).

I decided to use mobility aids when doing so has allowed me to get out of the house and do something, without them it just wouldnt have been possible and I would of missed outings etc
eg I hired a scooter to use at the zoo, I used a wheelchair (getting pushed by their people) at airports

Ive had to use wheelchair while at hospital to be taken out to car when they discharged me etc.

My doctors thou have never suggested I get one as they dont have a clue how bad my ME is at times thou Ive tried to tell them.

It is a huge relief when one decides to put ones thoughts aside on how one feels about using them and use them so one can do something.

 

[Tammie]

The only caution I would mention re getting one used or thru insurance is to make sure that it doesn't weigh too much if you are going to have to get it in and out of your car yourself and to push yourself around.........there is a HUGE difference between a standard model and a light weight one (standard ones tend to start at around 50 pounds and can be heavier than that)......lighter models (obviously more expensive, but it doesn't matter how cheap it is if you can't use it because it's too heavy) can start as low as 8 pounds (though I didn't find any that light that also folded up)....the lightest folding chair I found started at 17 pounds (different parts do add some weight, too)...........the one I got is the one that started at 17 pounds and I can barely get it in and out of the car, but I can.....there is no way I coudl manage one that was any heavier

also prior to getting sick I had to use a chair after foot and ankle surgery and I was very strong at that point, and rented a standard chair, and I still had some trouble pushing myself around and got tired and sore fast.....now as sick as I am, I have no problems at all pushing myself in the lighter chair and I did not get tired or sore (except my neck was a little sore from looking up when I went to the grocery store in the chair)