Recovery: I feel your frustrations

General General GBS Discussion
1

Hello everyone

I contracted GBS in 1995, I am a long term survivor of this disease, and I am here to tell you that you CAN have a reasonable normal life, post GBS.

I read from so many new members of this group how frustrated they are with the speed of their recovery.

There is no magical treatment that will return you to the life you had before guillian-barre,the only thing that will speed up your recovery is the amount of effort that you put into getting back to your previous quality of life.

I was in the ICU for nearly three months, paralyzed from the waist down, physical therapy for another six months, and it was excruciatingly painful. I had to learn how to just move the major muscles in my legs. It took intense concentration just to get a little movement, eventually walking with a walker, then without, then jogging, then running, and eventually snow skiing again! I have never had motion sickness a day in my life, but my first 100 yards back on skis, I became violently ill, I spewed all over the ski slope, But I collected myself and went some more, got sick again, collected myself and went again, and again until I got over the motion sickness.

My point is that you have got to want it!

My advice to everyone who is recovering, download REO Speedwagon “Keep pushin’” play it over and over until the lyrics become a part of you, dig in, and do it!

Keep pushin’ on!
My prayers are with all of you for a full recovery

Charlie

2

Hi Charles!

I am 17 months out after a mild case of GBS which didn't feel too mild. I struggled for months with strength and balance issues as I continued to try to jog again. I slowly regained my strength and more endurance but still had difficulty with my balance and resulting dizziness as I tried to do more. I couldn't even take turns down isles in a store without getting dizzy and sick. I finally found a PT who specialized in vestibular ocular problems. I practiced and practiced the exercises he gave me for a couple of months. It got a little worse before better just like he said but I fought through it and got better. I got where I could run on the treadmill again. Slow but steady. I recently ran a 5k race for Thanksgiving and placed 3rd in my age group. My legs were tired after (especially day 2 & 3) but I haven't felt like I was backsliding. It has taken me awhile to reach this point and I found that I had to push myself but listen to my body. It's been a slow go but encouraging with time. Whatever you do, don't give up when you get discouraged. I've had plenty of those times. But I have learned to go a different way when I hit a road block. You might have to wait before trying again or reset your goal. Set your bar lower but don't throw out the bar!

Good luck to everyone facing this challenge!

3

17 months and running a 5k…fantastic!

Keep pushin’ on!
That’s what I’m talking about!