Hi Rolma - Maybe this will sound stupid, but have you ever considered carrying a cane, walking stick or umbrella, just to have something to steady yourself with when that happens?

Had I known what my condition was all my life, I would have considered this, because there were times when I was downright panicky when crossing busy streets - oddly it got MUCH worse once I moved out of New York City!

They have some incredibly artsy looking and feminine canes, and besides, when drivers see a pedestrian with a cane, they tend to have more patience.

I am hoping to train my new dog to be a balance and mobility assistance dog as she grows up. They have sturdy leather harnesses with handles that you can hang onto or lean on - of course you have to have a fairly large and steady dog! LOL...

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA

Lois:

I used to live in the suburbs and, the thing that struck me when I moved to the city was how slow the traffic moved. So I can definitely see how cross the street in New York might be easier!

Here's two for both of you.

Small children (who I adore but must come to a dead stop around). And people on bicycles who come up behind you on the sidewalk, shout something like "to you left!", "heads up!" or "behind you!" and expect you to both hear what they said and understand what they mean, because apparently it's too much of an inconvenience for them to slow down.

I have nearly been ran over by about 5 bicycles and exactly one power chair this way.

Type of Myotonia: Becker

Country: USA

Jenna - For sure - Not only do they assume you can hear them AND process the info accurately and swiftly, but they make the HUGE assumption that you have the ability to react almost instantaneously. While it is very important for drivers to share the road with bicyclists, bicyclists forget that they have wheels, too, and they are responsible for watching out for pedestrians, as is anyone with wheels, including scooters and power or manual wheelchairs! As a rehab RN, I have had my share of "hit and runs" by disabled people who either had chips on their shoulders, or were just as bad driving their wheelchairs as they might have been in their cars! LOL!

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA

Hi Lois,

I have used everything known to man in order to help me out with walking. I have a collapsible cane, I have used large umbrellas, and I have even used a huge stick from a tree as well. I seem to go through periods where it gets really bad, then I'll be okay. It's when I go through these really bad times when I get panicky going across the street, even if I have something like a cane. The only way I can truly get across without a problem is to be holding onto someone's arm. When my balance gets realy bad, nothing helps because it feels like I could fall in any direction. It's still this way today and I cannot figure out what triggers it so that it gets this bad.

Type of Myotonia: Thomsen's

Country: US of A

I definitely understand- I have tried to figure it out for decades. The best I can figure (for me) is that I am really very shy and self-conscious, which makes me VERY self-aware whenever I feel that anyone may be looking at me - which makes me nervous, which brings on the adrenaline, which makes my muscles get both weak and stiff, which makes me really nervous and fearful, which makes me feel really insecure, which makes me feel more physically unstable. Of course, all this happens in a matter of seconds, and it took me trying to replay it in slow motion many times, to realize that the "stage fright" and sense of almost going to faint or lose orientation is probably a mild type of panic due to the fear of falling. And yes, an arm to hold feels so much better - I have just seldom been in the position to have that available to me.

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA

Exactly. I have come to the conclusion that I can cross the street somewhat okay, if I cross when there's no one around. Even if they're at a red light and it's my light, I start to panic and the adrenaline kicks in. It seems that even when I'm walking down the street, and I come across people walking the other way, I even start to get more nervous that I'm going to do something like fall. I am still getting over a bad stomach virus and had been out of work initially for a week, and then another 2 days about a week later. When I get some type of GI virus, I find, my balance is non-existent, which is really frightening when you work in the city and quite often have to cross large streets.

Type of Myotonia: Thomsen's

Country: USA