It’s Guillain-Barre Syndrome Awareness Month
I didn’t know anything about GBS until I got it three months ago. Chances are, you hadn’t heard about it either, unless you know someone who has had it. So May is the month to spread the word that this disease is out there.
What exactly does spreading the word do? Well, most importantly, raising awareness amongst the population raises its profile in the medical community and that assists doctors in making early and accurate diagnoses of the disease. Early treatment is critical in preventing the symptoms from going from serious to completely debilitating or even deadly.
The GBS / CIDP Foundation International has been leading the charge in raising awareness, and if you have any interest in learning more about it, start there.
There’s also this great blog article by David Farr that points out some of the famous people who had had GBS. I had no idea that the US President Franklin Delano Roosevelt suffered from it. It’s quite amazing what he did with his life, under the circumstances.
GBS changes your life in a thousand ways. Things you once took for granted that you would always be able to do, you can only dream about doing. Here’s my top ten list of the things I dream about doing (and hopefully will be able to do again soon)
- Playing sports with my kids.
- Writing without feeling guilty that I am burning energy I need to save for work.
- Reading books
- Blogging on a regular basis
- Playing video games with my kids
- Going out to nice restaurants with friends
- Having a beer
- Having a foofy coffee drink
- Being able to work 8 hours without crashing every evening
- Cutting the lawn / doing yard work
Here are a few things I don’t miss:
- Spending three hours a day commuting
It’s not really an even trade. Once I get all those things back in the top list, I’ll probably put up with the one in the other and be happy about it.
Probably.
Joe Beernink 
Wow! Is alot all we miss ja!
I also suffered from gbs. Im from scotland and im currently doing setting up a event to raise money cycling 850 miles in 12 days in the highlands! check out my website and get intouch if your interested in anything! http://www.challengeduo.com and you can email me info@challengeduo.com
Thanks for bringing awareness to this debilatating condition. I was diagnosed 5 months ago and was lucky to have only a mild case; pain and loss of function in the lower limbs only. I am now back at work on a part-time basis, which is no mean feat considering I am a Yoga Teacher! Doctors have credited my overall health as factor for my quick recovery but I am still dealing with pain and fatigue on a daily basis. Others are not so lucky to get their life back so soon.
It is ironic that May is GBS awareness month. On May 17th, 2013 I had my first symptom and by Memorial Day I was completely paralyzed. During this time I went to the emergency room 5 times at three different hospitals. The first two kept diagnosing me with different things from a pulled muscle to a bladder infection. It wasn’t until the 5th time and a new hospital that they began to look at Guillain Barre. I spent the whole month of June in the hospital. Three of those weeks were in rehab learning to walk again. Thank you for your story. The hospitals in my area are in desperate need of information on this topic.
It’s horror stories like yours, melody, that really make me appreciate how lucky I was to have my case diagnosed so quickly. Please keep spreading the word so that no one else has to go through that.
I hope things continue to improve for you. Rest as much as you can and be patient. It’s a fine balance between rebuilding your body, and breaking it when it comes to GBS.
Best wishes
Hello, this sounds like a bunch of supportive people striving to their best. I’ve been out of the wheelchair and leg braces for a few months. Not looking forward to Mn winter, really wanting to find ways to exercise, and needing employment…but feel fortunate I am able to walk around and…I missed driving!