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My GBS Story

Guillain Barre Syndrome Day 107 A Very Disappointing Day

Guillain Barre Syndrome got the best of me today! It’s now day 107 and I attempted to stand up with the bars against the wall from my wheelchair but I was not able to. Today was a day that was a bit disappointing to say the least. I thought that I would’ve been able to as my legs continue to get stronger. I’m happy that I have seen improvements mostly in my legs. I just really thought I could have today.

The reason I thought I could have is because before I did my plasma exchange treatment for five days at the Saint John Hospital, then five more days of IVIG treatments here in Fredericton I didn’t do much on the SCI fit machine. I seen improvements since my treatments in terms of strength, endurance and muscle fatigue was getting better.

When I first went on the SciFit for the very first time I was only doing 0.11 miles then I did 0.18 miles then I did 0.24 miles as my legs couldn’t really push the peddles down that much. This was extremely hard and I thought to myself, wow! This is hard, will I ever walk again and if so I have a very difficult journey ahead of me. This week after my treatments I did 1.0 miles on Tuesday in less than 15 minutes, on Wednesday I did 1.2 miles in 18 minutes and then on Thursday I did 1.5 miles in 22 minutes. I am happy to see these improvements but I was so sure I could have stood up only to realize how difficult it was. I am working my but off up here so hopefully soon. This is by far the hardest thing I’ve ever done as I retrain my whole body to work again. Hopefully I’ll be on my feet soon, it can’t come soon enough. Guillain Barre Syndrome really sucks!