misdiagnosed more. I remember when it was pooh-poohed as a diagnosis. It's really only in the last 20 years as I recall that it's been taken seriously. And geez, not to take GB seriously is mind-boggling! But it's one of those things that docs do when they don't know WTF they're looking at. I used to give talks for the MS Society and I can't tell you how many people, mostly women, came up to me and told me that some (usually male but not always) doc had blown off their symptoms, told them it was all in their heads.....and these were often people in wheelchairs! So that's part of the reason. GB wasn't accepted as a legit diagnosis for quite a while.
So here's Bud. I bring him up as an example of someone who has lived with it for about 20 years and, though he's definitely had to make adjustments, he's doing better than Dad and the rest of his deceased friends! The last time I saw him was about 6 years ago -- he was as dapper as ever (he's an incredibly handsome man) and walked with a cane. He did walk, as he says, a little like a drunk .....he'd occasionally weave......but he was otherwise doing pretty damn well! (I'm surprised one of this ailments isn't skin cancer....he was a real sportsman and always outside skiing, golfing, playing tennis, etc etc. He always had a George Hamilton kind of tan, probably still does. He got lucky there!)
Bud Palmer moved from one outstanding career to another. A basketball star at Princeton, he played for the Knicks from 1946 to 1949 and was the team’s first captain. After his playing career ended, he was a longtime television sportscaster and New York City’s public events commissioner. Now 85, Palmer lives in West Palm Beach, Fla. FRANK LITSKY
HOW IS YOUR HEALTH? I’ve had prostate cancer for 15 years. I have Guillain-Barré syndrome, which affects my nervous system and my balance, and I can’t play golf or tennis or ski anymore. I walk like a drunk. A doctor told me recently that I’ve had a broken back for 60 years. My left knee bothers me. Except for that, I’m in the greatest shape.
It's one of those diseases like MS. I've known people who've had MS as long as I have (25 years) who are living pretty normally, with MS having only caused a few periods of exacerbation and they bounced back afterward. I did great for a long time and then got clobbered.
It's all unpredictable -- you learn to live with uncertainty & the unpredictable cropping up. You know what? That's life, though lots of people don't realize it. They haven't been touched with something like this or with some other terrible event out of their control. They will, sooner or later. There are things we can do to exert as much control as possible over our diseases, as you are and as I have. But at some point, we just have to find acceptance of uncertainty.
I'm now "retired" as I'm no longer able to work, which I HATE! That's what got me through the first 20 years with MS! I was diagnosed weeks after I went back to grad school. I finished school, going full-time and working half time. MS was just something in the background. I'd occasionally have an exacerbation and have to deal with it, and a couple of times it really threatened my ability to finish my degree, but I managed. Key through all of that was MS was just part of me, a part that I didn't focus on at all. Having "a life" is one of the big things that helps most people. The folks I've seen struggle the most are those for whom their disease is their central focus in their lives. It'll necessarily be the primary focus at times when you're going through exacerbations and treatments and certainly when one is newly diagnosed.
I'll leave you with the words of the wonderful neurologist who diagnosed me. He said "avoid stress, don't get over tired and get on with your life." I literally laughed at the first two given my circumstances. The last was great advice!
= new reply since forum marked as read