Focus on what you can do. Get help for what you cannot do.

Anonymous
June 7, 2010 at 11:37 am

Marcio,

Every case is different. My progression was slow, intermittent and asymmetrical at first with periods of recovery followed by further declines. I started at age 26 (I’m over 60 now) but didn’t stop working until about age 50. Fortunately, or not, this was due to the slow and, thankfully, almost painless progression.

Will you get better? Maybe. Seek out a lot of “2nd” opinions.

You say you’ve fallen often. Get a referral to physical therapy. If you fall due to foot drop then get AFO’s. These are braces that hold your foot up.

As for coping? I usually don’t wear any clothing with buttons. My wife took all the buttons off my jeans and slacks and sewed Velcro strips on the waistband with a little cloth “handle.” I have dangles, or loops on all my zippers. I changed all the door knobs in my house to lever type. I don’t drive much anymore. This is because following one vacation where I did not drive my wife noticed “Hey, you have a lot less arm and finger cramps, why’s that?” Less driving.

I have special adapters for my knives and forks and pens/pencils that make them bigger and easier to hold. I use a special “spork”- fork+spoon thingy.

I use earpieces on my phones. I can no longer comfortably hold phones, or cups, or books, or kindles or…..

Oh, yes, I had my share of depression. Now, I am in the ‘sit in my chair and enjoy the summer camp.’ I can guarantee you that if you fall into the “Oh, poor me’ camp that’s what you’ll get- more oh, poor me. There a books and seminars and expensive doctors willing to talk to you ’till you are out of money about “Behavior Modification.” Ok, OK some cities/counties have free resources you can avail yourself of.

What’s it mean? A variation on a theme of ‘seek and ye shall find.” What is the theme? If you think it, guess what comes? Exactly, more of it. Therefore, think up, not down. Think forward not about all you’ve lost.

I’m not talking about thinking yourself healthy, you could try though. I’m talking about a balance between “I’m gonna fight this thing and gee, isn’t life fun!”

Find out if your workplace offers disability insurance. If yes, do you have it? Is it possible to “buy” an extended version?

Welcome and good luck.