I got my handicapped parking permit today. This is a big deal for me. It's not that I couldn't get along without it, though it will certainly be a big help; instead, I think it's something psychological.

Many of us had trouble getting a diagnosis (and some of us still don't have one). Some of us have been suspected of being a basket-case of some sort. For most of us, the disease is not only invisible but variable, which is unusual as far as chronic neuromuscular diseases go! Even with the permit, I'm going to look suspicious, because I often walk normally into a store (it's getting back to the car that's the problem!).

It took me months to get myself to ask the doctor to fill out the form. I was afraid he'd say, "Well, I don't really think you need this..." That would have been devastating to me, if the one person who should be expected to actually know about myasthenia didn't get it.

I'm just saying all of this out loud (so to speak) because before I can overcome these feelings of illegitimacy, I have to put my finger on what they are, exactly, and where they come from. This forum is a huge help! Thanks, everyone, for all your support so far. It does wonders for me to be able to say, "All the myasthenics I know on-line say..." or "Everyone on the forum goes through this..." It's a huge help.

So, I intend to boldly park where I never parked before, and not give it a second thought.

Abby

Abby I went through the same emotions!! I got my permit a couple months ago strictly so I can conserve energy. For example our K-Mart has a huge parking lot but even the handicapped parking is some distant from the door and that parking lot gets blazing hot. Heck I have given some thought to using the Handicapped carts because my wife is a slow shopper and if I am on my feet long I really get weak. Right now I hunt for a spot to sit for a bit and rest. I have finally convinced myself to think of conserving my energy instead of worrying about what others think. Heck if I explained what my problems are the doctors don't even understand much less the general public. My new son-in-law asked me why I didn't exercise more to improve my strength!!!
Do what you have to do for yourself.
Mike

Mike, for department stores I highly recommend a wheeled walker (rollator) with a seat. It's perfect for conserving energy. It's very light and easy to push, and you can sit down wherever you are--standing in line, or examining merchandise on a shelf, or waiting for your wife. It's the unrelenting standing that does me in when I'm in a big store. If I can take short breaks, it helps a lot.

I also like to bring mine because if I get attacked with an unexpected weak spell and can't walk at all, my husband can push me on it, though I have to sit backwards on it so I can rest my feet on the bar. Here's what mine looks like. It folds up.

http://www.amazon.com/Rollator-Rolla...8941157&sr=8-2

The trick to using it as a wheelchair in an emergency is to tip it all the way forward and step over the padded bar. Then lift it up around you, and sit down on it so you're facing the wrong way. Then you can put your feet on the horizontal bar. Not a replacement for a wheelchair, but excellent in a pinch.

Abby

I finally got my permit when I went to the mall to do Christmas shopping and had to park so far away that by the time I got to the doors, I had to turn around and leave because I used all my energy getting to the store! I knew if I went in, I would never be able to get back to the car!

Don't feel shame if you need a little help - I use the electric carts at large stores - I could walk but I would have no energy for the rest of my day and I choose to use my energy for other things than walking around WalMart!

Abby,

I can understand your reasoning for using the Rollator this way, but that's not how it was designed to be used. Just stepping into it the way you described is a hazard in itself. It also offsets the center of gravity when you're seated that, making the chance of tipping greater. It's much safer to sit on the seat as intended, you can still be pushed if needed.

Glad to hear you got your permit though, I can't imagine not having one now that I've got mine!

Rachel

Good for you! it took a long time for me to give into getting my permit, but what a blessing! Now, I cant drive but its still nice to know my family can park close to things for me. As we all know, the more steps we take, the weaker we get.

Thanks, Rachel. I hadn't thought of that, about changing the center of gravity. But in an emergency, if I need to be pushed, I can't be pushed sitting forward, because there's no place to put my feet, and I'm too weak to hold them up. Maybe I can have my husband weld on some foot props in front or something.

I know that the completely responsible thing to do would be to get a wheelchair...it's just that it's hard to let go of the little independence I have left.

Abby

Abby, I totally understand not wanting to let go!
We pushed my mother on her's many a time, it is a very handy thing to have around. I keep her's in my SUV as a "just in case" I too have trouble in the stores. So I'll take any help I can get at this point. I've also thought about a travel chair, sometimes there aren't enough scooters around when you need them!
Your husband is so talented, I'm sure he could weld something for you! He made that fantastic rickshaw, it's so great I tell people about it all the time!

Keep inspiring! You have so much to share with others!
Rachel

Abby, I'm glad you got your sticker. I've had mine for years now. It helps so much, especially in the summer and winter. I don't realize how bad off I am until I try to walk around a store.

Good points, Rachel.

There are lightweight scooters, that can fold up into a car! Your insurance might pay for one. There's no way I could wheel myself in a wheelchair. While I like the idea of a rollator or other walkers, my arms get way too tired.

Yeah, that rickshaw is super cool. You're lucky to have such a great and talented husband.

Annie

Abby,

I got my permit very late in the game. In retrospect it was totally idiotic that I didn't apply for it before. When I was still able to drive, but not walk longer distances, I would find excuses not to come to meetings that didn't have a near bye parking lot. I ended up quarreling with one of my collaborators, because she was very cross with me for not coming for weeks. She said-"you can't be that busy" and she was right. I was too embarrassed to tell her that I could no longer walk that relatively short distance. I was surprised to see how supportive she was, when she realized what was going on. Shopping or going to museums was out of the question for me for over a year.

I applied for a permit only after the social worker in our department brought me the forms and almost forced me to fill them. I told her that I am probably not going to get it, because I can still walk on my own, and my medical letters are not very clear. I was utterly surprised when I got not only the permit, but also 100% disability. The form I got back said- "severe generalized refractory myasthenia". They didn't care if my tests were positive or negative. They were interested in my functional ability, ,and the neurologist there thought my clinical picture was convincing enough.

It was my first reality check, and also made me understand that at least part of my neurologist's ambiguity was because it involved making medical decisions regarding my care. It was much easier for the neurologist who only had to decide about a sticker on my car.

Just be glad that you often walk normally into the store, and don't feel guilty for it!
And please if you need a wheelchair, use one, before you have a serious accident. There are really nice ones that can fold into your car. And trust me it you are concerned with how you look, I can promise you that more people would stare at someone using a rollator as a wheelchair, then someone who quite naturally sits in a proper wheelchair. It took me time to understand that.

I can also understand why it is so important for you to know that your neurologist understands your illness and what it involves.
I know what a relief it was for me and my husband, when he quite hesitantly called my neurologist when I was not doing well, and instead of telling him I need an "emergency" psychiatric consult, he understood what was going on, gave him very practical advice, and even called later to see how I was doing.

Overall I can say from my experience that people understand your illness better, once you do, and come to terms with it. Most people are very supportive once they know what is going on (even if your symptoms are variable). But, are very confused and puzzled if you don't give them a clue.