Where did the summer go?

Wow, has it really been almost 90 days since I last posted here? I've hardly even given it a thought. I guess that's what happens when you're soo (too) busy!

I've been communicating with several people who either are current victims of GBS or are family members of current victims. One of them is a gentleman from Moscow, Russia. We all have different degrees or levels of disability from the illness, but we all share the same frustrations at the loss of independence and ability to maintain our former daily lives.

I'd love to hear from any of you who read this blog about your experience with GBS.

My wife and I will be travelling the middle of the month, first to a college alumni reunion in TN and then to the tenth bi-annual GBS-CIDP Symposium up in the Chicago, IL area. We're very much looking forward to renewing old acquaintances. Between the two events will be stops at two of our children's homes to spend time relaxing with our kids and their kids.

And after our return I'll be having some follow-up tests done to determine the current level of damage being done to my low back by osteo-arthritis. I feel rather certain (unfortunately) that more surgery will be indicated. It's been just over 2 years since my laminectomy on discs L4 & 5.

Aging is not fun! Avoid it if you can! ;-{)

Byron

GBS Victims

Hello again,

I can't believe it's been almost a month since I last posted here. Time flies!

As I intended, my activity with my website (www.gbsnightmare.com) has brought me into contact with families of new GBS victims. Without violating anyone's privacy, I was contacted about three weeks ago by a family from the midwest whose mom was diagnosed with GBS the middle of June. She's been on life support since that time and in their last email to me they indicated that she's being weaned from the ventilator, about twelve hours at a time.

Many of the questions they've asked about reactions their mom is having are Oh, So Normal! I wish that weren't the case, but it is. Victims of this illness feel so helpless and so hopeless. The mind is still active, but the body just will not respond; and so someone else has to do everything for you. I was going to say, "What a drag!", but it's so much more serious than that!

If you've been there, or have gone through it with someone you love, please let me know so we can help other victims who are still in the middle of it.

Thanks for your time.
gbsbyron

Hot Days in Florida

Like much of the rest of the country, where I live in N. Central Florida, IT'S HOT!! We've had some pretty good rains over the last several days, not anything as severe as the midwest, but enough to turn things back to green again.

I've begun working on my hobby more in earnest over the past week, (my '64 Corvair convertible). I'm "boiling out" the gas tank using a three-step process of degreasing, etching, and finally coating the interior to get rid of the gum and varnish left behind when a car sits for a long time without being run. The coating process will also help to prevent a similar occurrence in the future. The chemical products I'm using are made by a company called POR-15, Inc., and the sealant chemical carries the same name. Has anyone reading this used these products and with what results. I'd be curious to know.

Another part of the POR-15 product line is a rust-preventer paint. It's three-step process is similar to the gas-tank sealant process, but the third step is the paint rather than just a coating. They claim that when applied correctly, this process totally prevents moisture from ever reaching the metal again and thus prevents any further rusting. It also strengthens the metal itself, even stronger than when new. Again, I'd be curious to hear from anyone who's used it. I'll post my own experiences with it as I move along in the process.

GBS Today Welcomes You!

Hello,

My name is Byron Comp and that's a picture of me almost eight years ago when I was beginning my recovery from Guillian-Barre' Syndrome. That illness literally became "My Worst Nightmare," and as my recovery allowed, I wrote a book about the experience. The book is dedicated to all the other victims and their families and friends who have been struck down by this horrible illness.

You can find copies of my book on Amazon.com or through my own website, http://www.gbsnightmare.com/. But the reason why I created this blog is to communicate with other survivors and their families and to offer support and encouragement to any victims who are going through their own nightmare right now!

Please contact me so we can share experiences and can thus encourage each other. I look forward to hearing from you.

Thank you for taking time from your busy day to read and respond to my blog. Byron