Anyone else with balance problems from MS:

[Redstone]

Do you find yourself doing things to "cover up" when you're with people you haven't told about your MS?

The other day, my son and I took a walk with some neighbors through the salt marsh, where there was a "walkway" of wooden planks about a foot wide. As soon as I saw how narrow the walkway was, I made damn sure I walked behind everyone else (including my son) so they wouldn't see me wobbling off the planks about every ten feet and plonking a foot into the mud.

You'd think after 25 years, I'd be used to doing this. But I'm not. I still go to great lengths to avoid embarrasment and / or having to explain why I'm unstable.

Have you done that too? I bet you have. If it would make you feel better to talk about it here, please do. I'd be right happy to hear there are other DUers in the same boat.

Redstone

[zanne]

1. I have problems with balance, too.

I don't have MS. I have a mild form of Muscular Dystrophy called Charcot-Marie-Tooth disease. (I know, it sounds like a law firm). My feet are a bit misshapen, so I have a problem balancing on them sometimes. Isn't it strange that, even though we have a good reason to fall to one side or the other, we still get embarassed about it? If I don't wear my braces, I can trip over a small crack in the sidewalk. When that happens, I dust myself off and look around to see if anybody saw! Sometimes, I think that it's because I don't think of myself as disabled in any way, so my first reaction is to scold myself for being "klutzy". My latest embarassment was at a friend's house. He lives near a river and has a boat, so we were all walking towards the boat on the FLOATING dock..... Well, I don't have to tell you what happened, do I?

[mr blur]

2. I have MS balance problems too

I never try to hide it, because I don't see the point. My friends know I have it and, as for everyone else, I don't care what they think. Then again, I usually have a cane, or a walker and occasionally a wheelchair so it doesn't really come up, I guess.

It's a shame you should feel embarrassed, though.

[preciousdove]

3. There is great incentive to hide it when you can...

I think I had my first MS attack when I was 16 and was a youth leader with a group of Junior High Girl Scouts on a trip to DC (Malcolm X was assassinated while we were there). All I can tell you at the time is that I felt weird and weak. We had a layover at the Chicago Bus Terminal in the middle of the night and we got out to stretch our legs and grab some soda. I thought I was just sleepy but I was wobbling and slurring my words when I talked. I heard someone say to another person walking behind us say that they thought I looked awfully young to be drunk in the Chicago bus Station in the middle of the night which scared the heck out of me because I didn't realize that it was that bad. Guess I should have had my girl scout uniform on. I grew up in an affluent suburb.

But then I was guilty of the same thing Christmas Eve 1986 I finally got a check I had been waiting for for months. It was the ONLY money I had for Christmas that year for my 11 and 9 year olds. We headed out to the mall first because that is where they wanted to go and at the time all the teenagers were pretending to be spastic to spoof passersby. There was a teenager acting that way with a friend and they hurried into the Fanny Farmer and were patiently waiting for the clerk to finish up with another customer when the "spastic" kid suddenly fell over and hit the marble floor like a ton of bricks. I happened to be by an emergency phone and called mall security asked them to call for an ambulance and told them I was sure the kid was having an insulin reaction given what I saw. A short time later someone started CPR as he stopped breathing. His obit showed up in the paper the day after Christmas. If I had not assumed that the kid was just spoofing I would have run in and grabbed the candy myself for him or done whatever it took. He and his friend (who had to feel terrible) didn't want to cause a scene draw attention to being different.

The last incident for me happened on a blistering August night in 1985. There was a local chain warehouse grocery that was OK to visit during the day but I generally avoided it during the evening but it was close to my grandmothers home. The longer I am overheated the weaker I get. My car had no AC, the store had no AC that night due to remodeling. I am seeing sering white light around my vision and I told my son that we had to get in and get out and back to air conditioning but they had recently remodeled the store and I had trouble finding what the antihistamines for my younger son he was breaking out in hives all over. I had to give up my job due to weakness and had not gotten a more sedentary one yet so we were on food stamps for a few months. Lines were long and the cashier I had had a problem with people with food stamps I found out when I was only 2 people back but I was too sick to get in another line. I gave her my food stamps for the juice and 7up he needed and a check for the antihistamine. I was really sick. She had to change the tape. I said to my son so she could hear that I wasn't feeling well and he should bring the groceries to the car. I was laying down in the front seat when he came out and said that I needed to come back in. The out door was closer to the lines but it wouldn't activate so my son went around to let me in so I didn't have to walk all the way around the store again. What he and I didn't know is that the cashier had taken my check (less than $5) and evidently keyed in the wrong information and it did not go through. She immediately called the manager told him that I had given her a bad check and then "fled the building" and that she was sure the check was stolen because I was obviously a drug addict (slurred speech and all ya know). The manager and a gang of employees was waiting for me to come in the "in" door and did not recognize my son. I went to the casher and she turned pale when I asked what this was about. She said I had to wait to talk to the manager and then tried but failed to get the intercom to work. I was still ready to pass out so I told her that unless she told me what was going on I had paid for my groceries and I was going to leave. I made it to the door where I was suddenly tackled from behind to the floor. I still don't know what was going on so I started screaming for someone to call the police. Security then put a knee on my bladder, one hand over my mouth and his arm across my neck cutting off my air. I passed out and lost bladder control. When I came to the manager was there and told me I needed to come to the office in the basement. I said I would wait there for the police to sort it out. Four guys grabbed me and took me down stairs. The handcuffed me and told my son he had to wait "outside" the building. This was one of the last places I wanted my 11 year old alone but there was nothing I could do. The police arrived and of course they got the store account first, including the additional lie that I had attacked the security guy so he was forced to do what he did. Luckily the police officer was reasonable. The first thing I asked him to do was make sure my son was some place safe. He listened to my story and then when up and talked to my son who gave the exact same account except my son still didn't know why the people in the store had gone crazy and attacked his mom. He also made them key in the check again and it cleared. I got released with a ticket because the store manager insisted. I went to the hospital, got pictures taken of my injuries and something for pain. The charges were dismissed. I sued the store and won enough to pay for that son's and therapy. We literally jumped every time anyone came up behind us in the store and cringed when we saw grocery store employees for about the next 12 months. My younger son who wasn't there (at my grandmothers where we had gone to see if she had any antihistamines so we didn't have to go to that store). His teachers told me he was jumpy and had withdrawn (he is my comedian) even though he was not actually there.

Last story, not mine. My sisters best friend had two deaf brothers and a deaf sister. The sister and her fiance were shopping at the local Sears. He felt insulin shock coming on and he had candy in the car so he took off forgetting he was holding something from the store.
He was tackled outside the store by security. He didn't get his candy and is really, really out of it (they think he is on drugs). He is also deaf and security would not let his fiance try to help with the communication. After 20 minutes she manged to write a message and get another store employee (not involved) to call 911. EMTs arrived and security was not going to let them in but the police arrived and luckily the police were reasonable and let them take his blood sugar treat him and get him to the ER. The store still pressed charges and he had to go to court. (They said everyone would use that defense so they couldn't let it go).

For some of us wobblers just going to the store can get us insulted, injured, in legal trouble or worse.

[zanne]

5. What a bad time you've had.

I hope nothing like that ever happens to you again. ((((HUGS)))))

[fudge stripe cookays]

6. Good Lord! That's horrific!

I haven't had any problems yet, but if anyone does hassle me, I'll guilt trip them so bad they will regret it.

I'm so sorry you had to go through that!

fsc

[ProfessorGAC]

7. You Hold 'Em, I'll Pound 'Em.

There is absolutely no reason why anyone should ever hassle someone for having a disease! The story related here is sickening. Everyone i know is aware of my illness. There is nothing to hide. It's just a sickness. I didn't do anything to deserve it. It just happened.

Anybody gives me grief in a store, the entire regional management staff will have to come in for a meeting with me and a lawyer.

What is described in the above events is prima facie illegal. ADA is our friend. (Cite: Mann & Roberts Business Law)
The Professor

[ProfessorGAC]

4. A Little, Yeah

And no, i don't cover it up. If i have some issues for a week, and i stumble or something, i just tell them i have MS. It's no big deal for me to tell them. They either completely understand or they don't. That's on them. I'd rather they know they to think i'm hammered or something, just because i can't walk in a straight line.
The Professor