[Stellatum]

I don't know why this was so hard for me. I think I was afraid that if I asked the doctor to submit the form, I would discover that he doesn't really believe me about how bad my illness is, because he usually sees me in the mornings, when I don't look so bad...but of course my fears were unfounded. Thanks to all who encouraged me on this. I think there's something pscyhologically difficult about having an up and down disease like this: you start to doubt yourself.

He asked me if I had had any falls, and I told him just the one off my walker, which wasn't due to myasthenia but to stupidity, which is an incurable disease. It is a treatable disease, though: I won't be riding my walker around any more, I can tell you that. I wonder if you can get a handicapped parking certificate for stupidity.

Abby
who's plenty smart in ways that don't have to do with common sense

[Twinkletoes]

(((Abby)))

If there were handicapped parking certificates for stupidity, you couldn't even get a parking spot at WalMart!

Best wishes to you!

Love your sense of humor!

[Stellatum]

Hey, that's funny, the way your little animation person is riding her rolling chair is pretty much the way I was riding my walker when I hit a crack!

Abby

[Shari_W]

Abby and twinkletoes,
You both have put a smile on my face Thank You

I'm glad you decided to get a handicapped parking certificate Abby. You'll be glad you did now that you are able to park closer.

Less steps, Less Stress!

[pingpongman]

Yep Shari you are right. I got mine about a month ago and I felt kinda guilty. I only use it when I need to. It saves my energy. I had felt unsafe in parking lots with my double vision. I walk like a drunk and was afraid someone would hit me.
Mike

[alice md]

Originally Posted by Stellatum

I don't know why this was so hard for me. I think I was afraid that if I asked the doctor to submit the form, I would discover that he doesn't really believe me about how bad my illness is, because he usually sees me in the mornings, when I don't look so bad...but of course my fears were unfounded. Thanks to all who encouraged me on this. I think there's something pscyhologically difficult about having an up and down disease like this: you start to doubt yourself.

He asked me if I had had any falls, and I told him just the one off my walker, which wasn't due to myasthenia but to stupidity, which is an incurable disease. It is a treatable disease, though: I won't be riding my walker around any more, I can tell you that. I wonder if you can get a handicapped parking certificate for stupidity.

Abby
who's plenty smart in ways that don't have to do with common sense

1. You are right, one of the hardest thing about this illness is its unpredictable nature.

2. sounds like you have a really good neurologist.

3. Your fall was because of your myasthenia.

4. walkers are not meant to ride on, they invented wheelchairs for that purpose.

5. It took me a very long time (way to long) to admit that I need one, but once I got over this psychological barrier, it made my life significantly better. (e.g-for the first time in three years, I could actually see more then one picture, that happened to be located next to the entrance, in the museum).

6. we are probably all quite stupid when it comes to dealing with this illness. Fortunately, they don't test your qualifications as a patient in medical school, or else I would have probably failed all the exams.

7. sometimes we can learn from the mistakes of others, and sometimes we just have to make our own mistakes.

[Stellatum]

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

[iwasanurse]

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.

[Stellatum]

Originally Posted by iwasanurse

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

[craftyRCC]

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