Alice, you're right about wheelchairs, and I do know it. I was looking for one, but I have a question. My husband has pushed me in my walker a few times when I was stuck somewhere--far from the car, and suddenly (unexpectedly) too weak to walk. But when we're outside, that makes me very nervous, because if he hits a crack in a parking lot, or a rock or stick or something, the whole thing can tip in the direction he's pushing (I am usually sitting backwards on the walker, so that I can prop up my feet on the axle). This has happened a couple of times, so if I'm in that situation I ask him to pull me instead.

The wheelchairs I see all have front wheels that are similar to my walker's front wheels. So if someone's pushing me in a wheelchair outside, what's to stop me from being spilled forward out of the chair if we hit uneven ground? Are wheelchairs not meant to be used outside?

For now I have my rickshaw, which is very safe (there's a photo of it here: http://neurotalk.psychcentral.com/album.php?albumid=471 ). That's perfect for walks around the neighborhood, but it's too big to put in the family van. I would like to be able to go to outdoor places with my family this summer.

Abby

Dear Abby,

I know the feelings that you are going through because I did the same. I then got a power chair with my insurance thinking I could then use to go shopping and go to places I couldn't then. However, insurance will not pay for the lift on a car to carry the chair. So I am still stuck and have a brand new power chair and can't use it to accomodate me. Doesn't seem fair. Good luck to you though.

Endless frustrations, dealing with the disability systems in America! I'm sorry you're stuck. People don't understand how precious each bit of mobility is to us. I told my doctor that on a good day, I don't need the parking thing, but on a bad day, I just don't go out. That's what I'm trying to change. And sometimes I have to go out on a bad day.

Even the handicapped parking form, in my state, is stacked against me: technically, I only qualify if I can't walk without the help of a "brace, cane, crutch, wheelchair, prosthetic device or another person"--nothing about a rollator there, but my doctor is going by the spirit of the law. What really upsets me is that everyone is sure he knows someone who got a certificate fraudulently--and everyone is sure he knows someone who's perfectly healthy, but has a disability income. Then I hear stories here, like the member who was accused of failing to take her medicine, since myasthenia gravis can simply be cured by taking your medicine. So infuriating and tragic.

The other day, three different little league coaches told me that I must volunteer in the concession stand, or my son can't play. I knew this was just woeful ignorance, but I had to take my complaint all the way to the league president before we got that one straightened out.

Abby

Abby,
It sounds like the type of wheelchair you are talking about is a "transport" chair. It's used mostly for brief periods like going in and out of buildings and if someone can't push a chair themselves. They are made light weight so they can easily be placed into car trunks and things. There are many different types of wheelchairs out there. Look around on the internet, you'll be surprised what's out there at a good price.

Scooters and mobility chairs are great, but as "nurse" said most insurance companies will pay or help to pay for them, but nobody pays for lifts and ramps to get in and out with them. Even the lightest ones can be impossible for someone with MG to lift!!

FYI, a rollator is designed to assist in walking, (it is a walker). Assistive devices qualify you!!

Good luck finding something that will meet your needs!!

Rachel

Thanks, Rachel, that's helpful. I will start poking around the internet. I was daunted before by my insurance company's $300 deductible...but my recent hospitalization just took me to the ceiling of that, so now's the time.

Abby

Abby,

I've had a handicapped certificate (display) for years. I don't feel guilty about it at all. And the certificate can be used in any car you are in and whether you are driving or not.

In the hot months, MG gets exponentially worse while even walking short distances. I can get so short of breath. Same for the winter. And since we never know when our MG will tank, we can't exactly walk a long way to a store since we may not make it back to our cars!

These sites are only for examples of the foldable scooters they have now. I've considered this but don't really "need" one yet. Using a wheelchair might be too hard on the MG arms! Glad you can do it, Alice.

http://www.scooterdirect.com/FoldableScooter~16.htm

http://www.planetmobilityscooters.com/

I have no idea if any of those have good reviews or not.

Each state is different when it comes to the reasons why you can get a handicapped certificate and/or license plate. I opted not to get the plate at this time either. I want to be seen as "normal" as much as possible.

Annie

They also make "seat belts" for wheelchairs too!!

My companion's/ husband's/ son's/ friend's arms are strong enough to push it.

And you are right, I am very fortunate to be able to lead a reasonably productive life, with all those wonderful people around me.

I put a few pictures (that my husband took on our last trip to Barcelona) on my profile, so you can see the way I travel. http://neurotalk.psychcentral.com/album.php?albumid=501

Wow, that's cool. your husband made that for you?

A wheelchair isn't great if you have a lot of cracks etc. You are much less likely to tip over then in a walker, but it is not comfortable and can lead to damage to your skeleton, because you don't have shock absorbers. (mostly if you have some osteoporosis, like I do).

There are many different wheelchairs. I chose mine to be nice looking, light weight, and easy to fit into the smallest cars. it looks quite similar to this http://www.kueschall.ch/en/ULTRAL_897.aspxonly its bright red, with matching wheels. And mine also has a head rest attached to it, because many times I can't hold my head for long on my own.

I have to admit that I do not do much outdoor traveling since I became ill.
We only go walking in places that are meant for that.
we recently got rid of most of our camping equipment because we realized we are probably not going to use it again. (fortunately we can afford to go to good hotels that are fully equipped for what I need).

But, for you there is still a good chance that you will go into remission, with the treatment you are receiving. So, hopefully, it is temporary.

I just remembered this site which we looked at before we decided on the wheelchair.
http://www.wheelchairsforus.com/type...r-wheelchairs/
hope it helps.