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My GBS Story

Going Home May 15, 2020, Discharge Date Changed

Well I was just informed today after their weekly rounds concerning patients that I’ll be staying now until at least May 15, 2020. My discharge date has changed. It was previously May 1st and now I’ve been extended. That’s okay, that’s good, it gives me more time to recover with the level of therapy you can only get here at the Stan Cassidy Rehabilitation Centre in Fredericton.

Several people today asked me how I felt about that and I said I’m completely fine with it. As much as I want to go home and see my kids and family I know I need to be here. Trust me, like any patient that’s been in the hospital as long as I have, you want to go home. A person needs to however think smart about it and realize where is the best place for them to be right now. Recovery is the focus and there is no better place for that to happen then right here.

Day 265 Now! 100 Days Away From A Full Year

It’s crazy to think that I’ve been in the hospital/rehab this long, 265 days now!!! I’m 100 days away from it being a full year out of my life recovering from Guillain Barre Syndrome. August 1, 2019 seems so long ago. I look back and see how far I’ve come when my prognosis wasn’t good but for me and who I am, don’t tell me I’m not going to do something as I’ll work my butt off to prove that anything is possible. I don’t quit until I achieve what I’m focused on accomplishing. That’s who I am, no matter what obstacle is in front of me.

I’m here now till at least May 15th so I’m happy that I’ll continue to get rehab.What has always worried me about this whole thing is being sent home knowing there is no outpatient Physiotherapy being offered right now back at home in Moncton. When people don’t continually work, they may lose part of what they worked so hard to gain. I’m glad I’m here a bit longer. This allows more time for discharge planning and more recovery.

My Kids, I Miss Them

I know I told my kids the other day that Dad is coming home May 1st. Certainly thought I was going home but with the recent standing up and me walking changes everything I’m sure. As long as people progress they stay. I told my kids today that I need to stay a bit longer to get where I need to be. They understand but I want to go home so bad too. I want to see my kids, hug them, kiss them, it’s been too long now.

I’ve seen so many patients here during my stay say I’m going home no matter what. I completely understand where they are coming from. There will be a day I’ll probably say the same thing when I feel I can manage on my own to the best I can as long as there is outpatient services being offered in Moncton. My recovery is my focus. I want my life back and I’m going to work my butt off to make that happen.

This coronavirus affects discharge planning so much, maybe it’s to my benefit, I don’t know, I’m not in those meetings. For now however I’m here longer and I’m going to make the best of my time towards my recovery from Guillain Barre Syndrome. I feel lately things are changing quicker, getting stronger, doing new things etc… all promising things towards recovery from GBS. As always one day at a time and kids dad will be home soon!!! 😉

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My GBS Story

Walking With Walker For The First Time In Physiotherapy Today! Day 265 Guillain Barre

Well I did it!! I went walking with walker for the first time today in physiotherapy. Today is day 265 now since becoming ill with Guillain Barre Syndrome on August 1, 2019. The other day I stood up for the first time on day 260 and now this. I never thought I would ever get disconnected from that sling in the parallel bars and walk outside them. It doesn’t matter how many days it took me to get here, it only matters that I finally got there. GBS truly stands for getting better slowly, but the most important words is getting better. I’m getting better and that’s what’s important.

Unfortunately I didn’t get a video, I wanted to but they already had 4 people there for the first time, I hated to ask, and I didn’t. I so wanted to, to have that first video of me walking not attached to anything but I didn’t want to bother asking someone. I know they would have but next time I will ask. It felt good though, I knew I could do it… just no safety net in case I fell but I’m getting stronger.

Walking With Walker First Time

I walked only in the gym today and I walked to the other end of it where the black tape is on the floor. When I got to the end they wanted me to sit down but I’m like I’m good, I will if you want me to but I’m good. My physiotherapist was like you can make the turn to go back? I told them I might have to take a 10 point turn at the end though. I’m like yeah I’m fine. I started turning but I babied it as I definitely didn’t want to fall so baby steps. One of physiotherapist assistants speaks up that’s more like a 30 point turn, lol, she’s quite the joker. 🙂

Yes I was happy about today but I keep my emotion in. My physiotherapist always jokes with me, you gonna give me something Jamie, lol 😆 The day I walk out of here on my own two feet I’ll give her just a little bit of emotion, lol That’s the day I dream of, that’s the day I work for, that’s the day that will come. The only thing yet to be decided and determined is the day. I will get there I know it!!!! I’m determined, focused and my recovery from Guillain Barre Syndrome continues. 🙂