Recently diagnosed

[KC]

With Guillain-Barre Syndrome
Anyone else have any experience with
this stuff?

[hedgehog]

1. You may find Joseph Heller's "No Laughing Matter" worth a read.

"It all began one typical day in the life of Joe Heller. He was jogging four miles at a clip these days, working on his novel God Knows, coping with the complications of an unpleasant divorce, and pigging out once or twice a week on Chinese food with cronies like Mel Brooks, Mario Puzo, and his buddy of more than twenty years, Speed Vogel. He was feeling perfectly fine that day -- but within twenty-four hours he would be in intensive care at Manhattan's Mount Sinai Hospital. He would remain hospitalized for nearly six months and leave in a wheelchair.

Joseph Heller had Guillain-Barré syndrome, a debilitating, sometimes fatal condition that can leave its victims paralyzed from head to toe. The clan gathered immediately. Speed -- sometime artist, sometime businessman, sometime herring taster, and now a coauthor -- moved into Joe's apartment as messenger, servant, and shaman. Mel Brooks, arch-hypochondriac of the Western world, knew as much about Heller's condition as the doctors. Mario Puzo, author of the preeminent gangster novel of our time, proved to be the most reluctant man ever to be dragged along on a hospital visit. These and lots of others rallied around the sickbed in a show of loyalty and friendship that not only built a wild and spirited camaraderie but helped bring Joe Heller, writer and buddy extraordinaire, through his greatest crisis.

This book is an inspiring, hilarious memoir of a calamitous illness and the rocky road to recuperation -- as only the author of Catch-22 and the friend who helped him back to health could tell it. No Laughing Matter is as wacky, terrifying, and great-hearted as any fiction Joseph Heller ever wrote."

http://www.amazon.com/No-Laughing-Matter-Joseph-Heller/dp/0743247175

[KC]

2. Thank you

I just ordered it!!!

[tpsbmam]

3. So sorry to hear it, KC

I've known a few people with GB. I used to work on a physical medicine & rehab unit in a hospital and we had a few people come into the unit due to GB. The worst I've ever seen was this great relatively young man who had 4 kids & was the sole breadwinner in the family was clobbered with it -- his first episode left him quadriplegic! But that was by far the worst I've ever seen. Most experienced temporary weakness, balance problems and the like.

An old, old friend of my father's, Bud Palmer, has had GB for....I'd guess about 15 or 20 years now. I note that Bud is Dad's age....born in 1921.....and while Dad and most of their friends have died, Bud is still alive & relatively well (he's also had prostate cancer for a long time but keeps buzzing along).

I'm in bed using my tablet -- I'll look tomorrow for stuff on Bud. He was a pro basketball player (NY Knicks) and sportscaster for a loooooong time. I haven't seen him for about 5+ years -- he had a slight limp & his balance was affected, but he's lived a pretty full active life up through the last time I was around him.

[KC]

4. Apparently

It used to be pretty rare but seems to not be the case anymore . They aren't sure e
what causes it but feel some virus can trigger it or some trauma to the body ( I'd was in the Hosp still after surgery) or they also say it can be one of the side effects of the flu shot. Drs do say it can be reversible and I sure hope it is for me. I went through 5 treatments of plasma perhesis to clear blood . Two hour treatments similar to dialysis.
Going into rehab facility for a month or two to hopefully get better!

[ProfessorGAC]

5. I Know Two People

One of the guys that works for me said his wife had it when she was in 8th grade and was unable to move below the collarbones. But, she is ok now.

Another guy had it for about a year, just about 10 years ago. He's fine now and shows no ill effects.

So, hang in there! I think it's something that can be well managed.
GAC

[KC]

7. I've read

Where others have had it worse than I do and I really so thankful that mine hasn't gotten any worse ! It's uplifting to hear others have gotten better or recovered completely!

[tpsbmam]

6. I'd guess it's a number of things. Part of it may be that it used to be

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!

[KC]

8. Gosh thank

You for this information and loved the info on Bud too.
My brother was diagnosed with MS when he was 26 he's now 56 and really doing pretty well. He has his days when he is really tired or stressed, like you said but he has learned to deal with it.
Love what the neurologist said about getting on with your life. So true we can either cave in and just give up or keep on fighting and just move on. This is so new for me I still get down but mainly frustrated. But I am feeling better mentally each day! Just anxious to get the physical therapy going!!

[Warpy]

9. The bad news is that it gets worse before it gets better

The good news is that it gets better, although as your nerves repair themselves, it can get to be quite painful. Most people recover completely. Very few have persistent weakness.